My Left Breast

 

An Obituary

 

About the author

Every year in the UK approximately 50,000 women are diagnosed with breast cancer. Of these women, over 40% will require mastectomies. At 39 a woman has a 1 in 215 chance of contracting the condition. These odds become less favourable with every decade.  In October 2013 I joined those statistics. The events related are not unique. They are repeated tens of thousands of times a year. But the story is mine.





As are these:
http://adventuresoftheanonymoustwo.blogspot.co.uk/

Post Script - Recovery

Post Script - Recovery

I

(The above photographs are property of Brighton based artist, Jamie McCartney)

Regrowth is a funny thing. My eyelashes were growing in fits and starts – clumps of eyelashes at certain points along my eyelid, and large gaps in others. They had also forgotten which direction to grow in, and were an unruly huddle of tiny hairs, regularly tangling top and bottom eyelashes together.

My eyebrows had decided to start on the action, but again, grew haphazardly out of my face and some had to be pulled out purely on the basis of the direction they insisted on growing.

Despite having wanted my body to re-grow hair, the process had also taken me by surprise. I often got out of the shower and then, as I dried my legs, realised that I had completely forgotten to shave. If anything, I seemed to be hairier than before. Perhaps I had just forgotten. It had been 6 month since I last needed to shave. Or perhaps it was partly due to the reduced oestrogen levels from the chemo induce menopause. 

Having lost all 10 finger nails, they had now grown back to a point where it looked as though I had a serious nail biting problem. This was an improvement on the less pleasant empty nail bed look which I had been sporting, and which had bothered me. On the tube I held onto the poles in a way which hid my nails as I was embarrassed and ashamed of how they looked. I didn’t mind being bald. I didn’t mind having only one breast. It’s funny the things that bother us.

In fairness, I never had a completely empty nail bed. My body had been helpfully trying to grow new nails. However, the new nail was sprouting underneath the existing one, thereby pushing the existing one off. So when it came off, there was a couple of millimetres of new nail already well under way. What this process meant was that, before the old nail came off, it was curiously bulgy in the middle of my nail, where the new one was underneath. When they came off, this overlap area didn’t come away. Therefore, as the new nails grew, the minute they started to get to a length which might be useful, the edges split and crumbled. I could see the distinct line on them of where the old nail overlap area ended and the entirely new one began. It just seemed to take a long time for it to grow through. And it’s amazing how much you need nails. Newly added to my increasing list of things you take for granted when you have finger nails was removing splinters from your fingers.

With horror, I saw that the nail on one of my big toes had lifted. 3 months after chemo had finished. This seemed cruel and I hoped it wasn’t a sign that I would lose all my toes nails as well.

For Father’s Day we went round to my in laws. I’m not entirely sure how the conversation started, but my mother in law announced that some survey had found that half of all sports bras were useless. I put my hand over my absent left breast and said that I entirely agreed. I would even go so far as to say that half of all bras were useless.

I was becoming conscious that this time last year I had discovered the lump. The process of diagnosis had taken two or three weeks, and while Steve and I had been well aware of the news that was to come, I don’t recall the date on which I was told that I had cancer. Nor do I want to. I am happy in the knowledge that it was last year. I don’t want there to be anniversaries.

II

 

The continuing cycle of appointments went on. 3 weekly Herceptin injections, 9 weekly blood tests and consultant appointments, 3 monthly heart scan. It would soon be time for the first of my annual mammograms. On the plus side, this would now only take half the time.

 

My third heart scan had been a resounding success. With prompt efficiency she listened, looked and measured and announced my score of 73. Apparently the second one had dipped a bit – not enough to cause concern – but now I was scoring better than I did on the first one I had had. Perhaps my heart was building in strength now that I was back at the gym. Anyway, it was good news, and there was probably only one more scan due.

As I sat in the oncology day unit waiting room for another Herceptin injection I started to feel like a fraud.  I had hair again. It was short but certainly not anything which would make a member of the public think that anything was (or had recently) been wrong with me. I could feel myself getting emotional, watching the endless cycle of patients going in to be hooked up to their poison drips, the nerve jangling beep beep of the machines as they finished emptying their demon cure into people’s veins, the looks of hope and resignation on their faces. They had new pictures in the waiting room which seemed to tell a story. I’m not sure if they had been deliberately selected or if this was accidental. One was a painting of a girl on a skeleton bob, hurtling down an ice chute. Like the slightly out of control, downhill slide of a cancer patient. The other was a silhouette of a mountain against a deep blue sky, with a silhouetted figure standing on top, their arms raised about their head in a silent, proud cheer of achievement. Like when a cancer patient finishes treatment, and is well again.

I had been feeling low for a while and couldn’t explain it. Work held no interest – perhaps no job would. Maybe getting this illness had adjusted my priorities to such an extent that the pointlessness of work was hideously exposed. The pointless of almost everything. I struggled to seem cheerful but the crushing futility of it all was a heavy load, and it sapped the energy from me. Maybe it was the sudden lack of a focus point. There was no longer a disease to fight, a treatment to face up to and deal with.

In the demystifying chemo session we had before all this began the nurses warned that it could take 6 to 9 months before you got back to your old self. Maybe this was what they meant. I had been out of chemo for 5.5 months. So perhaps this was all completely normal.

My hair was getting thicker. Not much longer, but certainly thicker. Although when people saw me they would say that my hair was growing. Undoubtedly it was, but from where I stood – right underneath it – it didn’t feel like it was getting longer. But it was starting to curl. On top of my head this was causing the onset of a thick bouffant look, and behind my ears it was forming into waves, and sticking out a bit. Who would have known that hair so short had the capacity to become so disorganised and chaotic. I was still undecided about what length to settle on. I intended to keep it short, but longer than this. Unless the curl worsened.

Quite by chance we found out that Jamie McCartney, the artist who had done the body casts of me shown earlier in this blog, was now doing a new project to raise funds for breast cancer, whereby he used a document scanner to take pictures of women with and without bras, and used these images to make posters. Poignantly the posters referenced the number of boob or bras, and then stated 1 in 8 (as in 1 in 8 women get breast cancer). His posters are at the start of this section along with two of the images he took of me. Naturally I contacted him to update him with my news and ask if he wanted to add a picture of me, and my 7.5 inch scar, to show what it was all about. Delighted with the offer, a date was arranged, and off we trundled to his studio.

His new premises were underneath a laundrette so there was a constant sound of rushing water through a large pipe running down the back of the studio. He got out the document scanner and warned me not to lean on it too much as it was only designed to take the weight of a piece of paper. We did a number of shots – one with a bra and prosthetic, one with a bra a no prosthetic and one without a bra showing the full glory of my scar. The two bra ones told a tale – he flicked between them to show the full (prosthetic) cup and then the crumpled empty cup in the next image.

Once he has enough images to put his next poster together, some of those pictures will be included.

 

III

I woke up one morning with terrible abdominal pains. The next day they were sharper, more localised, and I realised that it felt like ovulation. Previously I had been aware of when I ovulated. And that sensation was back. After 7 months, there was a suggestion that my body was resuming all functions.

Whilst in some respects this was not totally welcome, I hoped it would signal the end to menopausal hot flushes and the continuing pain and discomfort of sex. I wasn’t keen on having to go through the menopausal stuff all over again in 10 years, and hoped that I would still not get a red face – just the sudden dripping sweat over my body. Although in recent weeks I had also been getting itchy hands and arms during the hot flushes.

At around that time my mood suddenly lifted. It wasn’t gradual. It happened in an instant. I recognised the person who had returned, and in that moment I realised how long she had been gone. Finally, I was back.

Post Script - Disintegration

Post Script – Disintegration

 I

There was a strange mis match after the chemo had finished. My head was telling me that it was all over. I was better and keen to return to normal life. My body, however, had other ideas. It was still suffering and had a number of new challenges yet to throw at me.

2 weeks after the final chemo I returned to the office permanently.

Bizarrely, having lasted through most of the treatment, my eyelashes were gone soon after the final treatment. All bar two long lashes on each eyelid, so that if I put on mascara they looked like antennae, giving me the appearance of a curious insect.

So I stopped wearing mascara. However the more unpleasant impact of having no eyelashes was that my eyes were sore, and perpetually streaming. Being outside was worse and as I walked into work fluid streamed down my cheeks. I had a tissue permanently on hand to dab my running eyes. But everyone who saw me thought I was in a state of emotional distress. To counter this, I planted a broad smile of my face, however this only seemed to have the effect of making me look somehow mentally disturbed  as well as emotional. The fluid which didn't pour down my face made its way into my nose. So to add to my streaming tears I also had a runny nose, which would suddenly and unexpectedly drip - onto paperwork, into lunch - without warning. Before you go ' eeeuugghhh' this wasn't snot, but clear salty tears using the emergency overflow. Fluid escaped from my face on a broadly continual basis as it does with a baby.

My legs were having to get used to the daily walk in and out of the office. I wasn't as fast as I used to be and my muscles screamed with the pain of it, my shins hurting almost to the point where I could no longer put one foot in front of the other. He last time my legs hurt this much was ten years ago, doing he Royal Marines Commando challenge. Halfway into the mile long walk I would have given anything to be teleported into the office. I didn't want to know what damage the chemo had done to my muscles. There must have been some as my panting and racing heart was more than just a loss of fitness. Short flights of steps I approached with dread, so exhausting were they to climb. The slightest slope had the same physical impact on me as climbing a mountain. It just all seemed so difficult.

The walk involved 4 traffic light controlled crossings. I approached them, praying for the red man so that I could have a few moments rest, to let the pain subside and get my breath back. Annoying, and unusually they all changed to green man as I approached. Day after day. The cruelty of it was awe inspiring.

I was determined to keep doing the walking rather than admit defeat and take the tube. My muscles would only get used to it and my fitness return if I forced this on myself, this daily torture. It made the broad smile harder to force as I grimaced and let out quiet moans. Slow, limping, my muscles tortured, my face streaming, gasping for breath with every step I made myself walk. Every day. Twice.

Consequently I was tired by the end of the day, and pleased when the first week back ended. I was more tired than I had given myself credit for, and dozed off on Saturday afternoon, followed by 11 hours of sleep overnight.

On the plus side it was a delight to have my taste restored and be able to eat anything I wanted. I cautiously added previously banned foods back into my diet, gradually chomping my way merrily through blue steaks, live yogurt, smoked salmon, shellfish, blue cheese and runny eggs. I don't know whether it was my body being unused to these foods or my insides still trying to heal, but the day after introducing each missed food item back into my diet I would suffer from diarrhoea.  So sometimes I needed to temporarily pause, and return to the chemo diet.

Fluid retention was a known side effect of T and I had experienced it to an extent. The information made it clear that this would go after chemo finished, but emphasis that the process would be slow. My heavy legs and associated discomfort did nothing to ease the difficult I already had in walking.

But instead of easing, it seemed to get worse. Two and a half weeks after my last chemo I couldn't fit my fluid filled thighs into most of my jeans, and soon the only thing I could wear was a pair of loose fitting linnet rousers. Even then, the seam and any wrinkles in the fabric indented themselves into my spongy flesh. My socks left dents in my fat calves and my boots left further dents in my swollen ankles. I struggled to fit my puffy feet into shoes and by the end of the working day I couldn't wear shoes at all. It wasn't easy putting boots on for the walk back to the station. And because my enlarged feet were squeezed in, they were pinched and rubbed causing additional pain and blistering.

I was hideously conscious of my elephantine look and my knees that were so swollen I couldn't bend my legs, which added a whole new contortionist challenge to otherwise simple tasks like putting socks on.

I started to weigh myself daily to see whether I was still gaining fluid. Each day my weight crept up another kilo. But the most amusing result was the percentage body fat and muscle. The scales confidently informed me that I was 11% fat and 40% muscle. This would be nice, but it was a lie. Each day I checked again, waiting for the fat to go up, the muscle to come down as well as the overall weight to reduce. At my weight soared to 7kg over what it normally was the discomfort and inability to wear anything started to get me down.

A strange effect of the fluid retention was that my muscles ached. And this gave me the idea for a diet plan. The Chemo Effect Diet – reduces body fat, increases body muscle, makes you ache like you’ve done an intense gym workout. All without actually going to the gym. Ok so the small print of side effects and risks might need some work and a going over by marketing people. But the concept would surely be a winner.

Over 3 weeks post chemo, I seemed to be getting worse rather than better. So we looked up foods that help reduce water retention. Cranberry juice, green tea, nuts and seeds, beet root, Greek yoghurt, water melon, oats, tomatoes. And drinking plenty of water. Fortunately these were all things I liked so a new diet started to take shape. I don't know whether it was the impact of adding all these foods to my daily intake or whether the fluid retention would have started to reverse anyway, but from then on, the weight started to reduce. Initially it was about half a kilo a day, then whole kilos. At work and in the evenings I had been putting my legs up and even slept with my legs on a pillow to raise them up. While this helped reduce the sweeping in my ankles, the fluid then gathered around my knees which was even less ideal. Standing was problematic. I could feel my ankles and feet expanding with every minute.

I had even tried wearing the not entirely sexy compression stockings which I had brought home after the mastectomy surgery. First of all, it was extremely difficult to get them onto my bulging legs. During the night I would suffer from overheating – a combination of the nylon stockings and the menopausal impact the chemo was having. At the same time, the fluid was squeezed into my feet and knees. I woke up with podgy feet and toes like little doughy sausages. This was not a good plan.

 But still the weight, slowly, came off. Each day I excitedly told Steve that my body fat was going up. It's not often that news like that will put a smile on a woman's face. An unexpected, but obvious side effect of losing retained fluid was that you pee a lot. And I really mean a lot. I guess it has to get out of you somehow.

Believing that exercise must help, both with the fluid retention and the challenge of walking I returned to the gym. Having no hair meant lunchtime swimming was now an option - no hair to dry and no risk of mascara running. Pre cancer I had swum 15-20 lengths without needing to stop. In my first trip back I managed 4. Followed by 3, then 2 and finally reduced to single lengths. My heart was pounding. I could barely breathe and as each length finished I was starting to sink. The increased weight in my legs was also not helping.

Each day I went back and pushed myself through the pain. Soon I was doing repeated sets of 3 lengths. It was difficult, painful and a long way off what I was used to.

The gym does not have cubicles to change in. You all just stand in a room filled with lockers to get changed, so at any moment there are masses of girls in various states of undress. I was proud of my scar, clearly visible to anyone who looked in my direction. I liked the shock factor it caused, as well as the curiosity. And it explained my bald head. On the down side, when I wrapped a towel around me to come back from the shower, in the absence of one breast, it was difficult to get the towel to stay up. Who would have known that you needed both to provide that vital support.

My hair was growing back very slowly, and really amounted to little more than fine fuzz, but I was using Fast shampoo and conditioner which claims to encourage hair to grow quickly. To be honest, I’m not sure it made any difference but I did like the puzzled looks I got when I took two bottles into the shower at the gym – not because I should have been using Wash and Go, but the notion that a largely bald person needed so much hair product.

I made a mental note to make sure I checked my armpits when my hair did start to return in earnest. I hadn’t had to shave for months, and didn’t want to forget about them only to have an embarrassing moment mid-summer of raising my arms and suddenly appearing quite European.

As my chemo finished one thumb nail had lifted to a perilous extent. 4 weeks post chemo another 4 nails suddenly and simultaneously lifted. Within a few days all my finger nails were barely attached.

5 weeks post chemo finally the fluid retention had reduced to a point where I barely noticed it. I could get back into jeans and shoes and my weight was close to normal. Bizarrely the body fat and muscle readings were still well adrift from my default position. An additional daily test was to crouch. I could still feel the swelling behind my knees in that position and this was the best way for seeing if it was going. Back in the pool I did 10 lengths. 3 times. When I finished I paused at the end of the pool, grinning like a lunatic. I was back.

​The weather was warming up, and my fuzzy head sweated under the hat that I wore to walk in and out of work. The only place I wasn’t comfortable being bald was on the underground and the walk between the station and office. I’m not sure why. The hot flushes were becoming uncomfortable. It was a strange sensation. Suddenly, without warning, everything from my hips to my hairline (or where my hairline was looking like it intended to be) suddenly boiled. I could feel the heat rising off me, and my body would instantly line itself with a film of moisture. Although my face always felt fine and never went pink. Then, after about 5 minutes, it would subside and the moisture on my body would make me cold. This happened about 5 or 6 times a day.

6 weeks post chemo my thumb nail came off. A new nail had been growing underneath, which had contributed to the original one being forced away. But the new nail was small and only covered half of my nail bed. The freshly exposed part was sore and tender.

 

II

​One evening for dinner, Steve was preparing chicken for dinner. 'It seems a shame to cut up such nice breasts' he said. 'I hope the surgeon said that about me' I giggled in reply.

I was wearing a wig all day at work, having now started my new job and going bald there might have been a bit much for them, so early on. As a side comment, I left the old job just prior to the 4 day Easter break. This meant I had 4 days technically unemployed and therefore with no death in service, as Steve reminded me when he asked me to be very careful over the next few days. Fortunately, I survived unscathed. I wanted to chop and change between my wigs and this presented a dilemma. I was unsure how many people actually knew my situation – and would therefore be surprised if I went in one day with different hair. A friend suggested that I change wigs during a lunch break, just for a bit more fun. In any case, changing hair would at least pre-empt a discussion and perhaps make it less of a surprise when I eventually had enough hair to ditch the wig entirely. It was still unclear what colour it would grow back, but there would be a dramatic change in length from the wig. It was likely that people would soon be aware though, once I joined the nearby gym on corporate membership and bumped into people I worked with.

During the tube strike the wig and/or hat was finally relinquished for the long and warm walk into work from Waterloo - or the small bits of underground travel I could make use of. Work was now the final wig frontier.

When my mother next saw me she noticed a small birth mark on the back of my head which she hadn’t seen since I was a baby. It was odd that she noticed it now, given I hadn’t had hair for 4 months.

On the subject of babies, bro the younger and his girlfriend came over from Australia with their 7 month old son who now had 2 small teeth in his lower jaw. My mother commented that you are born with all the teeth you’re going to have and they just gradually push through as you get older. ‘It’s a good thing you’re not born with all the hair you’re going to have’ I commented. Despite using the Fast shampoo, my hair was growing back very slowly. And I was again surprised by my body’s sense of priorities. Armpit hair was resurfacing, but I still had no eyelashes. Given how sore and red my eyes now perpetually were, this seemed strange. I had a distinct sense of appreciation for eyelashes but saw very little purpose in armpit hair.

Eyelashes make a huge difference to your appearance so for a 20's themed party I decided to wear false ones to complete the look. Sitting there, in front of the mirror, with falsies, bum fluff hair as yet unwigged, make up on and loose fitting dress I did rather have the appearance of a pantomime drag queen.

Sitting bald in the pub a chap had introduced himself to me as he had once gone through chemo for throat cancer. Every time he subsequently saw me, he would come over for a chat. During one such conversation he kept welling up with tears as he recalled his own treatment. We came to the conclusion that during chemo, you don't have time to be emotional. All your energies are focused on recovering from the cycle, preparing for the next one, keeping going and getting better. But once it's all over, then the emotions can hit home. You have time for them. I wondered whether I would be unexpectedly hit by waves of tears in coming months, with recollections of what I had just been through.

My second heart scan drew near. It was much like the first, extensive looking, measuring and taking pictures as well as listening to its weird and wonderful sounds. She didn’t calculate the score this time but told me that the pictures looked ok so it was unlikely there was anything to worry about.

That night I was extremely ill, getting up to vomit about 6 times until there was nothing left to come out. As I dehydrated my hands were paralysed with pins and needles, but even slight sips of water only fuelled the next bout of sickness. We had gone out for dinner that evening, and were working on the basis that I had food poisoning. But in the back of Steve’s mind, as he told me later, he was concerned that if it wasn’t food poisoning, what was it. Was this disease now growing in my stomach.

As I sat on the edge of the bath after one of the many rounds of throwing up, Steve hugged me to him. I felt weak, thirsty, in pain and running with sweat. ‘This is typical’, I murmured to him. ‘I’ve survived cancer and I’m going to die from E Coli’.

On the plus side, that night shifted the last couple of kilos of extra weight I had been carrying, and when you’re largely bald, you don’t need a friend to hold your hair out of the way while you throw up. Sometimes you just have to see the positives of a situation.

III

 

I soon stopped wearing the wig at work at all. They had had enough women there who had gone through – and in some cases still were going through – chemo. One such lady made a point of coming to speak to me about my membership of the ‘special club’ and said I should definitely leave the wig at home. This made the hot flushes easier to deal with as I no longer had a line of sweat building up just under the rim of the wig, threatening to run down  my forehead at any moment.

And there was more positive news – I asked the consultant if I could start receiving Herceptin as an injection rather than IV. Yes I could. That meant the portacath which had served me so well could now be removed.

On the less joyous side, nearly all my finger nails were gone and I was left with sore, tender finger tips which proved quite useless in simple daily tasks like taking my watch off, doing the clasp on a necklace, picking up a piece of paper from my desk, picking bits out of my teeth, scratching – you get the idea.

 

Slowly my hair started to thicken and grow. This was a good thing because I was starting to look like a  woman again, as opposed to the mildly confusing effect that my sparse, wispy, semi bald head had had – my father had sent me back to the office in a black cab after we had said goodbye to bro the younger and family, who were returning to Australia. The taxi driver kept calling me ‘mate’ and seemed to thing I was a bloke, even though I was wearing a dress. It wasn’t even like I could get my tits out to prove the opposite. There aren't many times in life that you have the opportunity to be confused for a ladyboy. The other distinct advantage of thickening hair was the reduced risk of sunburn. I had mad that mistake once. The doctors had told me that chemo increases your susceptibility to sun burn for life. Pre chemo I burned with ease, so this was not good and meant far more care was needed in terms of covering up. But one time, I forgot the top of my head, which at the time was still inadequately covered by hair. Steve bought me a fabulous wide brimmed straw hat, and every time we went out, he made me take it with me. 'This is how it's going to be from now on' I told him, 'life under a straw hat.' Which seemed like a tip top title for a future blog.

I proudly told Steve that I was starting to change my look from ill to well ‘ard. However, he informed me gently that I could never look hard, and was going from ill to lesbian. Which should prove interesting. But with the obvious chemo appearance going, I now had the opportunity to come up with other explanations for my scar – should anyone see it. We discussed this in the pub and I said that I could claim it was from a shark attack. This developed into the totally believable story that, while kite surfing off the coast of Australia, a shark leapt out of the water at me causing the ‘flesh wound’ which removed my breast. However, undeterred I tackled it to the shore and barbequed it for dinner. It seemed plausible enough to me!

 

When I went for the first herceptin injection the nurse informed me that there was a lot of fluid to be injected so she would do it slowly over 5 minutes or so. It was injected into my thigh and I was warned that it would result in a lump of fluid under my skin but I was not to rub or massage this – it would dissipate of its own accord. I wasn’t particularly aware of a lump, but the injection site did smart a bit for some time afterwards if there was any pressure on it. Which meant I had to be cautious about how I sat.

 

A few days later I received the appointment for the portacath removal. It was being done by the same surgeon who inserted it and again I was walked into the sci fi wide corridored world of the operating theatres, where occasional figures in purple pyjamas drifted silently past, unheard on their theatre clogs. My face wasn’t covered over this time. It seems that for a removal they are a lot less worried about infection risk. I commented that I would miss it as I had got used to twiddling it between my fingers, and feeling the 3 protruding lumps which served as a ‘landing’ stripe for the needle insertion. And was promptly told off. Apparently some patients do manage to turn it over, and the needle can only be put in from one side.  I tried to explain that I never fiddled with it to that extent, but decided just to keep quiet.

 

I could feel strange pushing and pulling, then a very squelchy noise and the device was pulled free. He held it up for me to see – rather as a baby is lifted for a mother. It looked small and still had small lumps of my flesh on it. I was pleased to see it gone but also grateful for how much it served to ease my treatment. The surgeon told me that earlier that day he had removed a portacath from a woman on the second anniversary of it having been put in – and he then asked when mine was put in. ‘October’ I told him. He looked puzzled, and a little cross. The surgeon murmured something about needing to re-think which patients were offered the port as it wasn’t really viable for it to be used for only a matter of months. ‘It should have been in until January’ I continued ‘but I’m now given Herceptin by injection and they didn’t know in October that I would be able to get the injection’.

 

It was no good. ‘I just do what I’m told’ the surgeon continued, ‘and put them in and take them out as instructed’. He was grumpy now. This was not ideal. He was holding a sharp knife and attending to a hole in my shoulder – and I had upset him. I appreciated that the device and surgery cost money. But a PICC line needs weekly flushing and re-dressing – which would cost a lot in nursing time. I wasn’t entirely convinced that when you sat down and did the numbers, the port was significantly more expensive, even over only 6 months. But I kept quiet.

 

He started to sew me up. The internal stitches used a rough thread which pulled and tugged, and was generally uncomfortable. He then asked if I could see what he was doing in the lights. I looked up, and yes, reflected in the lights I could see. Damn, I thought. I could have watched the whole thing and I’ve missed it. I was tempted to ask him to start again. This was very annoying.

 

They weren’t able to take me straight back down to the discharge lounge, so I sat in a wheelchair while the theatre attendant changed the sheeting on the operating table, ready for the next patient. Once the white sheet was removed it was an alarming site. The table was made from solid bits of metal with various hinges and levers, topped with 3 black coated sponge cushions. Entirely functional. It looked like an instrument of torture, something straight out of a horror movie. Once overlaid with a new, crisp, clean white sheet, it once again took on a more friendly, medical appearance. But now I knew what lay beneath.

 

Afterwards it felt as though I had been given a robust punch in the shoulder, but we still went out that evening for step child the elder’s birthday, followed by a visit to the pub. Step child the younger is still mildly picksome about eating certain greens. I said to her, entirely straight faced and without a hint of irony 'you should eat greens, they're good for you and help protect against serious diseases like cancer.' While we're on the subject of food, have I mentioned that during my treatment I saw a nectarine and the thought occurred to me - a nectarine is just a peach on chemo. 

 

With the ports catch removal scar, I now had a stab wound story to add to the shark attack incident. Sometimes you can just have an unlucky few months!

 

I was surprised that it still felt like a lump there. Ever a couple of weeks later. I was also surprised by how much more painful and bruised it was compared with when the port was put in. There were times when I moved my arm in a certain way and felt a sharp sting as it tugged on the internal stitches. This discomfort continued for a surprisingly long time.

 

But the last bit of cancer equipment now removed. The pills, injections and mouthwash had gone as soon as chemo ended. My wigs were washed and packed away. The head scarves were in a drawer. The numbing cream was no longer in the fridge. And now the port had gone.

Now, about sex. During chemo this had been affected. Not because of the mastectomy. That hadn't made me feel any less female or sexy, nor did I have any issue with my scar. It was more to do with the regular bouts of thrush and rashes. As well as the knowledge that the chemo drugs come out in bodily fluids, and therefore I was mildly concerned about semi poisoning Steve. But now, post chemo the problem was different. It hurt. A lot. I was still menopausal and this had the super fun effect of reducing libido, which along with the pain made a combination which basically resulted in significantly reduced interest. We did some research. Anyone who has read this blog will realise that research has previously produced a mixed bag of results. But we continued un deterred. Our research indicated that the menopausal symptoms were to blame as they caused shrinkage of vaginal tissue. Now, before any men out there think woo hoo, that's not so bad -  shrunken, tighter lady bits - I have it on good authority that any enjoyment produced by this is quickly nullified by wincing expression on the face of your loved one, the gritted teeth and knowledge you have torn them to the point of bleeding. 

The information we found said that treatments that assist with the menopause can help but that anything hormonal, including use of the naturally high oestrogen soya, should be avoided by women who had had breast cancer. It did however advise that you may wish to ask your consultant for a vaginal dilator. Yeah, that conversation is not going to happen.

I read something in the paper: ‘To truly get pleasure form our lives we must first suffer. Only then can we appreciate what it is not to suffer and achieve true enlightenment.’ I’m not sure I was achieving enlightenment, but there was certainly a new appreciation of things that were formerly taken for granted.

 

 

Part 5 - Finale

PART V

 I

While the menopause symptoms had started, I wasn’t getting hot flushes as unpleasantly as menopausal women seem to. It was a prickly heat, just a sudden sweat – particularly a sweaty head – which would last a few minutes and then pass. So I was constantly taking jumpers on and off as the heat rose and fell. But I didn’t get facial flushes so all in all it probably wasn’t too bad.

The final session approached. I went for my last pre chemo blood test and the nurse hugged me, saying it was nice to see people get to the end. I was touched, particularly given that her job is doing pre-chemo bloods, so she must see this all the time. But still it cheered her. One lady who was post chemo complimented me on embracing the bald look, saying she had done exactly the same. By all accounts she had also taken control shaved her head and showed it off proudly. The ambassador movement could gain momentum!.

Even the consultant was excited about it being the final cycle and gave me strict instructions to stay out of hospital for the next 3 weeks. From now on the bloods and clinic appointments would move to 9 weekly rather than 3 weekly. This was progress. After that I would have annual mammograms for 10 years, then 2 yearly for 5 years and then onto normal screening.

And then the morning of the last session arrived. I was emotional. In October this day had seemed so far in the future, so unobtainable. Now here it was, and it had come round remarkably quickly.

I met again the lady I had sat next to on my last session. This was also her last cycle, but she still had to go through surgery. She also praised be for being brave enough to show my head and I was delighted to see that once on the ward, she removed her head scarf and sat there in the glory of her baldness, quite happily. The fight back was growing.

The final session was uneventful. I was still not taking the sickness pills, mainly to avoid the side effect of extra tiredness. This was partly because I wanted to be awake for the Style Yourself Confident session I had booked in straight after the chemo finished. There were 2 other breast cancer ladies in the group. One was about to start Herceptin and T on cycle 4, having completed 3 rounds of FEC. The other had just had her first FEC. We were all mastectomised and all of a similar age. We chatted for ages, delighted to meet other people in our age group. The lady who was half way through had an approach very like mine. She was still working. She had shaved her hair off and wandered around bald and proud. She had so far suffered considerably less than I had from side effects, and I had been pretty lucky. Her husband, on a military posting 4,000 miles away felt aggrieved that he had come back to visit her on false pretences as she was clearly perfectly ok.

We gave comfort to the lady who had just started – and she was amazed at our brazen bald headedness, and whether this was a problem to us at all. We both shrugged and said, we’re being treated for cancer. People can just deal with it. I feel the bald head ambassador unit growing in strength by the day.

In my experience, there were no issues. I went bald headed on the train commute to London. No one commented. No one looked. No one stared (or certainly not that I was aware of). But also, no one offered me a seat!

In the absence of sickness pills, I felt much more alert after the final cycle. Perhaps it was the psychological effect of knowing that it was over. After a couple of days there was a faint murmuring of itching starting and my thumbnail – which had lifted quite considerably – was clinging on by a thread. But I didn’t mind. This was the last time. I could almost enjoy the side effects as a final reminder of what I had seen off. I think the chemo knew this was its last chance to hurt me. While not as bad as Cycle 4, it was worse than the previous cycle. The days of being off colour lingered. This was its final hurrah, and it intended to make the most of it.

This did raise the query of when I could consider myself cured. As my cancer was so beautifully contained and had not given any indication of having spread, I viewed myself as cancer free after the mastectomy. So really, I only knowing had it for about 4 weeks. The chemotherapy was precautionary mopping up. But, just in case something unidentified had escaped, I suppose now I could call myself cured. But then of course the herceptin will go on until January 2015 to ensure my body deals appropriately with the HER2 protein in me.

Medically I need to live, without recurrence for 5 years to be formally signed off as cancer free. But statistics also talk about 15 year survival rates. This is rather subjective. At the age of 40 I fully expect to be alive in 15 years time. If I had got cancer at, say, 74, I would think 15 years was wishful thinking even if fully healthy.

All I could think about was that the worst was over. Just staying alive from now on was easy. My hair was starting to gently sprout and I wondered if I would miss the sight of my bald head. when we went out one weekend I told Steve that I could feel the wind in my hair. He looked at me and my bald head (with a smattering of small, wispy hairs) and laughed. My now sparse eyelashes and eyebrows had clung on just enough to keep my face looking like something I recognised.

In just over a week I will return to working from the office, permanently. In 5 weeks I will start a new job (yes you can have interviews and get a job offer while on chemo). And as I had been keeping up with work, keeping the routine going, this re-gaining my life wasn’t going to be a shock to the system. I wasn’t feeling the sudden loss of a cancer focused network and unfamiliar return to life before – knowing that it will never be like it was before. You cannot go through this and come out the other end unchanged. I am not the same person. I am better. I am more. I am alive.

II

I remember a story my father once told me. A man went to work. His train was hideously delayed. When he finally got in, his boss confronted him aggressively about an expensive mistake he’d made and he nearly got fired. Later that day his girlfriend dumped him. When he got home he spoke to his father about his terrible day. His father responded ‘my son, it will pass’. A few days later the son went into work. The sun was shining and trains were on time. On the journey he met a beautiful women and got her phone number. His boss offered him a promotion. That evening he went home and told his father about his amazing day. His father replied ‘my son, it will pass’. I have thought of this story many times over the past few months. And through the good times and bad, the ever present thought has been ‘it will pass’.

At no point during this ordeal has there been any point screaming at the sky and calling out ‘why me?’ The resounding answer can only be ‘why not?’

III

 One of the many cancer charities seems to regularly ask people to upload a follow-on statement to the prompt ‘oi, cancer…’. This tends to initiate cocky or aggressive responses, such as ‘oi cancer, I bet you’re afraid of the dark’ in reference to an upcoming moonwalk.

My response would be more muted – ‘oi, cancer. I respect you. I accept that I am mortal. I know that one day I must die, from something. But right now the music has stopped,  the lights are off and this tango is over’.

Part 4b - Halfway

PART IV (b)

 

I

 Okay, so technically it isn’t halfway. The Herceptin (which hasn’t started yet) will go on until January 2015 and I have to have the decency to stay alive for 5 years to be considered ‘cured’. Which would make half way another 2.5 years. But I was halfway through the chemo, and on the basis that that was the nasty part, it was good enough for me.

Now, back into the feeling good days, it was time to circulate myself around the family. I called my mother to arrange a day for her to come over.  She said that she had always known she loved me, but when I had initally called with the news of my lump, she realised just how much she loved me. ‘Always happy to have a disaster to make you realise how much you love me’ I jested. We chatted briefly about my younger brother’s similar efforts (he had broken his neck and back in a car accident, in Australia, a few years previously). She then told me that she had emailed bro the elder to warn him not to attempt any similarly attention seeking scenarios. ‘But what if he took the message too seriously’, she commented ‘and is then too worried to tell me if anything happens’. ‘Well that wouldn’t really happen’, I replied, ‘because he would tell all of us, and then if we spoke to you, we would say, 'Oh no, have you heard about the bro the elder?'. And if you didn’t know we would then say, 'Oh, had he not told you?' So ultimately you would find out’. She laughed.

During my ‘good’ week I tried to get into London for work. Being on a rush hour tube with a wig was alarming – firstly, there was the wind rush along the platform when the train arrived. It would be embarrassing to explain to the lender of the wig that I had lost it under an underground train. Then there was the crowd concern. I am short and tend to spend tube rides wedged into some strange man’s armpit. This was now less of a concern than the threat of being knocked or brushed past in a way which would result in my hair taking on a suspiciously jaunty angle. When walking around town over pedestrian crossings, by way of thanking the stopped drivers, it was tempting to lift my wig and nod to them, in the same way that one would doff a cap. I didn’t, but the thought – of their reaction – amused me.

One day in the office coincided with a date when my father was in the country, so we agreed to meet for lunch. I showed up in my borrowed, expensive wig. Standing about 2 feet in front of him, he didn’t recognise me. When we went back to my office I took the wig off so that he could see my bald head. Initially he smirked with the surprise of it. Then, seconds later, it looked as though his eyes were filling with tears. Nothing brings home the reality of your child having cancer than the harsh physical truth of baldness.

 

Walking back to the station I became aware that my default walking pace of approximately 100 miles per hour was unchanged. However my default cardiovascular fitness level was not at the same level as previously. The end result was an uncomfortable, panting mismatch.

I saw testicle man, and the rest of the commuter crowd on the train home. He asked how I was doing and I told him that I intended to be in the office for a further 3 days the following week. ‘We’ll see’ he replied, shaking his head. He really needed to be a lot less negative.

That evening we popped into the pub. It was the first time my borrowed wig had been displayed there, and the look was popular. Very popular. It’s fair to say that in that wig I could pull many many times over. Steve was relieved that this look was only temporary and I would soon revert to my usual appearance which aroused considerably less notable testosterone surges.

Everyone was saying that I looked really well. ‘I must get cancer more often – it clearly suits me’, I responded, to the general mortification of those around me.

As I had explained to my father, part of looking well is possibly because after so many days of feeling under par, you stop taking feeling ok for granted. So when the day comes when finally you feel good, you feel really good. You glow with goodness. It seeps out of every pore. So yes, I looked well. Because I felt well and wanted to enjoy every moment of feeling well until the next cycle.

My mother came round at the weekend. I opened the door, with my bald head exposed. She laughed. A lot. And then claimed that it wasn’t my bald head that had amused her, but my ears. Of all the things that may have been amusing visually, this seemed odd. My ears had always been there and surely, if anything, I would have looked more peculiar without them. My mother had found the look amusing for a number of reasons. Partly because I looked so petite and vulnerable but primarily because the light from the kitchen windows at the end of the hall was shining through my ears, thereby rendering them translucent and pink, which transformed me into an other-worldly character. Apparently I looked sweet – and funny.

She had driven all the way to our place in third gear, and had not noticed the engine noise because she was singing away to Nina Simone, which was emitted loudly from her CD player. I’m not sure that’s an image that I want in my mind.

 

She wanted some pictures of us together, but getting the correct location proved tricky, as the light kept shining off my head. Note to self: new business idea. Mattifying cream for the shiny bald headed market. There must be a huge demand, and I would proudly lead the charge.

She was impressed that I still had eyebrows, for which I thanked the Vaseline. ‘Why didn’t you Vaseline your head?’ she asked. ‘Because that would take a lot of Vaseline and be a lot of mess’ I replied. She didn’t seem to agree. ‘Ok’, I said ‘you go and Vaseline your head tonight’. ‘But I’ve got all this’ she exclaimed, tugging on her thick hair. ‘And I would have had hair too, given that using the Vaseline was for the purpose of preserving it’. She giggled, suddenly realising the ridiculousness of her suggestion.

II

 Herceptin was due to start, the day before the next cycle. The consultant had told me that while Herceptin did not damage the heart, as such, it did uncover any issues you might have. Therefore, I had to have a heart scan prior to receiving the treatment.

It was exciting to be in cardiology, rather than oncology. ‘Is it still sensitive?’ the specialist asked, in relation to my scar. ‘No’ I assured her, ‘I have virtually no sensation there at all’.  I lay on the bed while the she ran the ultrasound over my chest. And there it was, on the screen, dutifully pumping away. I had a heart. Which was a surprise. Now and then she would turn the sound on. The noise was wet and squishy. She looked at it from every angle, measuring it. ‘You need a score of 55 or over’ she explained. ‘We do scans every 3 months and if it falls below 55, your treatment will need to stop for a few weeks until the result has risen’.

She told me about her step-mother who had had breast cancer 5 years ago. She had found a lump but did nothing about it for several months. Hmmm, I know that feeling.

‘You’re very young’, she said ‘to have this’. I didn’t say anything. There was no response to give.

I needed to breath in, breath out, and then hold my breath, at various moments, as instructed. ‘It’s harder to scan someone slim’ she said. ‘You wouldn’t think so, but your lungs get in the way. You need to put some meat on for next time’.

Then she looked at it from underneath, and on the screen it pulsed towards me. ‘That’s a good heart’ she said, ‘I’d be happy to have that one’. Unfortunately, I wasn’t making it available for third party use.

My score was 70. I had passed. With flying colours.

III

There had been an article in the Daily Telegraph about whether people were shocked by a photo of Jennifer Saunders smoking, after having had a lumpectomy. It was accompanied by Yes and No arguments from two women. Personally I had no issue with the photo whatsoever. Drinking is also on the list of things that may cause breast cancer and I had carried on drinking. If anything, people who continue to follow ‘bad’ habits after being diagnosed with something nasty do so as fully informed individuals. Let’s face it, a vast majority of people regularly abuse their bodies with bad diets and lack of exercise, before you even throw in drink cigarettes and other drugs, in the ignorant belief that the nasty things will never happen to them. They all quote tales about a granny who smoked 80 a day and lived to be 110, without ever having had a cough. People like me and Jennifer Saunders keep our vices with a much greater awareness of what they can do. No, that picture didn’t bother me. However, the responses from the two women – both of whom had previously had breast cancer - did bother me. And quite a lot.

The first lady was upset by the picture. Initially I had deep sympathy for her. She started her response by saying that she was due to go to hospital that day for a mammogram to see if her breast cancer had returned. I couldn’t imagine a more galling feeling. It later transpired that she had had the condition 5 years ago and this was the final test to give her the 5 year all clear. Her entire response was filled with negative, glass half empty view points. 5 years on she still seemed to see herself as a cancer sufferer. She also could not relate to Saunders’s view that cancer was something which you could deal with and leave behind, admitting that she would find it hard to say she once had cancer – 5 years on from when her tumour was removed.

I wondered how her friends and family had coped during her illness and treatment if she was still this miserable about it after 5 years of being tumour free and after 2 years (by her account) of good health. She had taken 3 years to get well after her treatment. Now I fully appreciate that chemo affects everyone differently – the doctors had made that abundantly clear. The Macmillan nurses had also said that it would take a good 3 – 6 months after the treatment stopped before you really felt like yourself again. I admit I have been lucky. I feel well again a matter of days after each chemo and am bounding with energy. I haven’t missed a day of work. A large part of this is probably down my mental attitude – cancer will not define me, nor will I let it significantly impact my life. Our friends all said that they were impressed with how I had approached the condition. They respected and admired the way I had fronted up to it and just carried on with my life. Although they also demonstrated how little the general public knows. There were a lot of questions, for example, about the extent of hair loss. Is it just your head. (No it isn’t. I hadn’t entirely lost all body hair, but there was significant thinning and the hair I did have barely grew – so no need to shave anywhere for the foreseeable future). They also wondered if I was allowed to drink – yes I was. During the heartburn days, wine and whisky are definite no no’s unless you particularly thrive on have a burning sensation with every sip. Macmillan had warned that you would be more easily affected by alcohol and drinking on the day of chemo might not be too clever, but other than that, there was no reason to avoid it.

Even if I had not been so fortunate, or so positive, the quoted 3 years still seemed an awfully long time and I hoped it was not due to this particular lady wallowing in self pity. But the overall tone of her comment did rather lead one to that conclusion. I also realise that some cancers can be horrible, mutilating, debilitating conditions from which people may never fully recover, or indeed not recover at all. So I felt myself very fortunate to have had a tumour in my breast. I don’t need my breasts therefore, it was very straightforward to simply cut the offending body part off and throw it away – which you can’t do quite so easily with, say, a stomach, or liver. A breast cancer that hasn’t spread is absolutely something which can be dealt with and moved on from. And I didn’t think of myself as someone with cancer – technically I wasn’t. The mastectomy had removed it. All that was happening now was treatment to mop up any little buggers that may have escaped – not that there was any evidence that any had done so. Precautionary housekeeping – that’s what I was a patient of. Not cancer.

 

Her response angered me in a way I hadn’t expected. She did not represent me nor any of the other women with breast cancer that I had met during this process. There were only two occasions when I had been hard hit by my diagnosis. The first was when faced with the chuggers at Waterloo, the day after Dudley died, just prior to my surgery. The second time was when I was at home on my own, watching TV. An advert came on. It showed ordinary people, going about their lives. Walking down the street, standing in the office, going to the supermarket. Then, in slow motion, their hands fell to their sides, dropping whatever they had been holding. And slowly they fell backwards. At the last moment a Macmillan nurse came rushing in to catch them, and the advert was trying to say that when you get a cancer diagnosis, it hits you, it hits your friends, it hits your family – but Macmillan are there to support and help. For me, it showed the initial shoulder sagging, un-dramatic moment of diagnosis. The quiet gentleness with which you receive the news, the slow sinking feeling you get inside as the weeks and months of treatment are laid out before you. The moment when everything looks different and you haven’t yet mustered the determination and strength to walk this road, so much of which you have to do alone, while those you love look on from the side lines. That moment isn’t sudden. It isn’t loud. It isn’t screams and shouts and wailing. That advert captured entirely how it felt in those first few seconds. I saw it just before Christmas, when so much of the process had already happened, or was underway, and the ability for me and those around to deal with this was confirmed. But even then, it hit me in the stomach and brought tears to my eyes.

On the other side of the Telegraph response fence was a lady who had no issue with the cigarette smoking Saunders. I set to reading her response, expecting to find more commonality with her views. Well, not quite. The picture didn’t bother her now, but she suspected it would have angered her if she had seen it while she was still undergoing her treatment. And then the killer admission – she had refused to look at her bald head when going through her chemo. So you had to question the extent to which she had fully accepted her condition and what it was doing to her. She did also say that everyone deals with cancer in their own way, and certainly these two women did show two very different ways of coping (or indeed, not coping). But her response still saddened me. How can it be that people are still so frightened of this condition, so un-knowing about something which affects hundreds of thousands of people a year, so upset by their own temporarily bald head. Even the fact that there are many types of chemotherapy, each with its own different side effects, is not common knowledge. Where have we gone wrong in the education process? No wonder people were afraid given that generally, you are afraid of the unknown.

We saw some friends at the pub who we hadn’t seen for a while ,who talked about a character on Emmerdale with cancer, and how they didn’t like how this person was being portrayed. It seemed that they had turned to petty crime, with the implication being that the chemotherapy treatment had somehow initiated this and that, as a cancer patient, she would get away with it. I looked at our friend with a shocked expression. ‘Uh oh’, I said. ‘I’ve been merrily going around committing criminal acts thinking I could blame chemo fog, and that no jury would send a little bald headed person to prison. Maybe I’d better stop’. She laughed, but I took her point. A major soap had had an opportunity – and wasted it.

I quite happily and confidently go out with a bald head, and take my wig off in the office and pub without any concern at all. If the general public sees a person on cancer treatment, out and about, laughing, healthy and enjoying life, surely this can only ever be a good and positive message which is clearly greatly needed. I’m looking forward to getting back to the gym, standing unclothed in a communal changing room, obviously mastecomised. If one woman, just one, asks a question or speaks to me about breast cancer or its treatment, to allay her own fears or curiosity, as a result of seeing that scar, it will be positive moment.

IV

 I had been in the office for 4 days in the course of a week. This was excellent. Except that I seem to carry the curse of the royally fucked up train service. Back in January, my plans to go to work were scuppered by landslides and floods. Over the last week, the service on my usual train line was cancelled as early morning January ice (which seems to have come as surprise to the train operator) had caused a power failure. So I had to travel in on the cross country, circuitous route to Victoria (at least it was no longer flooded). Then we had significant delays on another day, due to a suicide at Liss (to all those with suicidal tendencies, other ways to kill yourself are available). Not only did this cause inevitable cancellations and chaos, but in their leap in front of the train, the individual had managed to damage the signalling equipment. Or, as our regular commuter group discussed amongst ourselves, perhaps all the lights looked red (blood and gore being liberally spread), and needed cleaning. Poor taste, I know.

On yet another day the train quite literally died in the station. It would not move. All power ceased. The subsequent train pulled in on the opposite platform and did provide a service, but managed to get slower and slower and slower in its progress to London.

V

To help reduce the symptoms and reaction from the next round of chemo I had to take a significant amount of steroids. For 3 days. So that meant any prospect for my athletic career was in tatters.

Cycle 4 involved numerous hospital visits. There was the usual early Monday visit for a blood test, followed by the Monday lunchtime consultant appointment, in which I was told about the different range of side effects that I may experience from the next type of chemo drug. This included loss of sensation in the fingers, and consequent risk of burning your fingers, as well as dropping things. Also my immune system would start to die sooner, so the unpleasant jabs would start at day 3, rather than day 5. And now would go on for 7 seven days, which wasn’t entirely welcome news. In the car on the way back Steve passed me the car parking ticket. I almost immediately dropped it under the seat and struggled to locate it – and yet I hadn’t even got the fingers sensation loss yet. He looked at me. ‘I gave that to you 3 seconds ago and you’ve lost it already’, he laughed. ‘And I trust you with the passports when we go on holiday’. I found it, but he carried on laughing at me nonetheless.

On Tuesday I was due to spend the day at hospital for the first Herceptin. The infusion would take an hour and half and then I had to stay on the ward for 6 hours in total, in case I had an allergic reaction.

Steve took a photo of my feet, which didn’t reach the floor when I sat in the chair. This was usual. I was too small to have cancer really. However, the chair did have a flip up bottom to make the picture a bit less like a little girl on a grown-ups chair, as well as being a darned site more comfortable for spending a day in situ. Unlike Steve’s visitors chair, which was less comfortable.

My main memory of the day is the uneven tune of bleeping drips around the ward. I had a lot of reading with me, and once I had read some material related to work I moved on to the magazines. One of them included a quote which hit home to me ‘you live once and life is wonderful – so eat the damned red velvet cupcake’.

There was a fun group on the ward that day. An older lady sitting next to me had a head scarf on and I would still see hair at her temples. I sat there with my bald head on show. She asked me whether I still used shampoo or just shower gel. To be honest, it varied. However, I didn’t bother  with conditioner, but did moisturise my scalp if it was dry. She said that she was still conditioning her head like a demon, to keep her remaining hair. She asked if I had a wig. ‘Yes’, I told her 'but after a couple of hours it becomes quite uncomfortable to wear, so I tend to just take it off, and if I’m out in public people can just deal with it’. She completely agreed with the discomfort. She had looked forward to wearing it for a night out but had been slightly disappointed with the itching and tightness. We both talked about the difficulties of the tightness – too tight, and it becomes too painful to wear very quickly, as well as leaving a red mark round your head. But too loose, and you get worried about coming off. She told me about an evening when a group of friends had gone out, one of whom was wearing a wig while having chemo treatment. ‘While walking down the street the wind whipped it off and blew it into the middle of the road’ she said. ‘But my friend calmly walked out, stopped the traffic, picked it up, dusted it off and put it back on again. We were all laughing’. As did I. It was a fantastic story.

She seemed to be suffering even less than me with the chemo. She hadn’t yet experienced the ‘downstairs’ stinging nettle tingle, nor had she needed to take any of her anti sickness medicines.

Opposite me was another bald lady who didn’t have any head covering on. She was having her 6^th chemo cycle. I am reticent to say last – her breast cancer was aggressive and not a lump. It had spread rapidly into her armpit and neck. The chemo was being done to shrink the cancer to a point where it could be operated on and her CT scan to establish if the cancer had shrunk to an operable size was due shortly. Despite this, she was still incredibly upbeat and positive. I felt huge admiration for her and guilt about my cancer having been so easily sorted, and blessed by having the cancerous part of the tumour neatly enclosed inside, as yet, harmless pre-cancer cells. Akin to a scotch egg.

For reasons I can’t explain, I kept reading sections in the magazines about hair care and simple ways to do seemingly involved hair dos – in my experience, the instructions are never quite as simple as they imply and the end result is usually far removed from that pictured. I’m not quite sure why I was bothering. It would be a long time before any of this information was of any use to me.

The lady next to me mentioned that she had had one chemo on Friday 13 and her last was due on April fool’s day. The nurse said that on Friday 13 a number of patients had cancelled their chemo appointment, and also, that a lot of patients refused to sit in chair 13, viewing it as unlucky. ‘You could take the view that we’ve already had the bad luck’ I said. ‘Absolutely’, said the lady ‘bring it on, number 13’. I liked her style.

One of the male nurses was talking about the danger of cut flowers to chemo patients, because of the bacteria in the water. I asked him if he realised what he had just done, giving all men permission not to buy us flowers. ‘Just while you’re on chemo’ he hastened to add.

During the Herceptin treatment I started to feel sick. Very sick. It was the first time that I actually thought I might be sick. It shouldn’t have been caused by the Herceptin – the potential side effects from that are headaches and skin rashes. The smell of the plastic tubing in my shoulder port turned my stomach. The slightest whiff and I felt the nausea rising dangerously. This was a bad sign. I needed to exert a fairly high level of control over my mind and force it to associate that smell with getting better, with being mended. It had to be linked to good things. As soon as I was unhooked I went to the loo, half expecting to throw up and really not wanting to. I paced the floor a few times until the imminent feeling of danger passed.

This was also the first day of my heavy duty steroids. Perhaps they were having an effect. The steroids were apparently an ‘upper’ and the consultant had suggested not taking them after 3pm, or I wouldn’t sleep. So I took them at lunch time – and soon afterwards I fell asleep for 2 hours. Not that much of an upper then!

Ana, the Portuguese nurse was working in a different section, but we could hear her loud voice across the divide. My nurse accused her of waking me up. It was strange – I had woken to the sound of Ana, but the ward was filled with noise, hustle and bustle, which I had been ever aware of, yet out for the count at the same time.

The good news was that plans were afoot for Herceptin to be available as an injection that could be self administered at home. This would significantly reduce the boring and long process that lay ahead.

Ana had an upcoming skiing trip and the patients and nurses in our section were having a bit of a sweep stake about whether she would have a broken leg before she went, or whether she would break her leg out there as she had popped over to our section briefly and nearly fallen off the nurses chair, whose wheels seemed to have run away at an unexpected pace. ‘I can hear you’ she called over the section divide. We all giggled.

It’s strange to say that an oncology ward is a fun place to be. But the utter positivity of the staff, the gentle ribbing between them, and the friendliness and good spirits of the patients made it a good environment . In that room no one ever seemed negative or brought down by what was going on, and why, despite the various outcomes we all had ahead of us.

The port needle had been left in, in case they needed access. The numbing cream does a good job, but that had been applied over 7 hours earlier, and the needle in me was now becoming uncomfortable. The nurse had offered to leave it in ready for my chemo the next day – not a chance. It was coming out.

The following day I was in for poisoning number 4. Now this started to feel like the beginning of the end, like I had broken the back of this treatment. It was strange how poison is used as a cure, in just the right dose, it helps rather than hinders. I put on my mascara before heading out to hospital and noticed that several of my eyelashes were missing. There was a distinct gap. However, I still had a reasonable number of eyelashes and was now at cycle 4 so it would be churlish to complain.

 

When the tea lady came round she had a biscuits - in one of the clean buckets that are used to put in syringes and other waste from the drips. Her theory was that it was a stressful day and everything was very behind schedule. She found that biscuits with tea helped the staff and wondered if it might also work on the patients. Although she kept the Cadbury's chocolate ones for herself!

A lady I sat next to said that from here it went quickly. She also said how her nails had suffered under Docetaxel, and she had lost a toe. Then she laughed, saying she meant a toe nail! In anticipation of the nails issue I had already cut mine short, to avoid catching or snagging them.

My take home goody bag of drugs was less full than usual. My anti sickness pills regime was considerably less. This version of chemo apparently was less likely to cause nausea. Admittedly I didn’t feel sick, but took the pills none the less. I wasn’t going to take any chances. In place of the sickness, however, this chemo was also known for making you more tired. 2 hours later I was asleep.

VI

I had received a letter from my GP saying she wanted me to make an appointment following the latest letter that she had received from my oncology consultant. The letter made clear that there was nothing to worry about. Given that it didn’t seem urgent, and that I was already spending quite a lot of time in the presence of the NHS I phoned the reception and asked if it could be a telephone appointment instead. Now there is a bit history here. Many months ago I had spoken to this particular GP. She had asked me to keep a symptom diary and then come in to see her a week later. I duly did as instructed. I had the first appointment of the day, at 9am. At ten past I was called through and asked what I was there for. Hmm, I thought to myself. So you didn’t spend those 10 minutes having a quick look at my notes and seeing that we’ve already had a discussion and I’m here, following what you instructed me to do. It was not a good start. This GP had now taken over from my previous GP – not that the practice had felt it necessary at any point to inform me that my GP had retired and I was now registered to someone else. So I awaited her call with a certain sense of foreboding.

 

A couple of days later, as scheduled, I received a call. ‘Hello, this is the doctor, how can I help you?’ Yet again, I realised that she had not taken the opportunity to spend even a matter of seconds looking at my notes before calling. But I was prepared for this. ‘I haven’t the faintest idea’ I said, ‘you sent me a letter saying you wanted to see me’.

Ha ha. Now I’d got her. Stunned silence. Ums and errs, and the istinct sound of fumbling as she quickly tried to locate my notes (some doctors might have already got this on their screen before calling). I offered her one bit of help. ‘The appointment request letter referred to correspondence from my oncologist’.

‘Ah yes’, she said ‘it’s nothing to worry about,  it's just that the hospital has dealt with all of this and we haven’t seen you, and we just need to let you know that we’re here’.

I’m glad I hadn’t wasted my time with a physical appointment. I was perfectly well aware the GP's practice was there, but I also had an excellent health service provided by the hospital oncology unit, plus an effective 24 hour helpline if there was anything I needed.

My opinion of my GP had not been enhanced.

VII

 Once upon a time I had had critical illness insurance cover, to pay out a nice mortgage-expunging lump sum in the event I had the misfortune to be diagnosed with a critical illness – such as cancer. A few years ago our situation had been momentarily financially interesting, and therefore every single non essential expense was reigned in. This included cancelling my policy – and I never bothered to start a new one after things picked up. Now I know that over the years the definitions of critical illnesses have been made more and more rigid. After all, the policy is designed to help when you have had a life changing condition which potentially prevents you from working again, or working in the same role, or which may require modifications to your house, and so on. It is not designed for a short term nasty illness from which you fully recover and then go back to your life as before. Given that my cancer fell into the latter category, I doubted it would have been covered.

But one day I decided to look up the critical illness definition for cancer by the insurance company I had previously been covered by. Huge sigh of relief – there is a reasonably high possibility it would not have been covered. Everything would have come down to arguing the toss over whether or not it was ‘in situ’. Yes, it had spread from the ducts and was invasive, but it hadn’t spread farther (such as into my lymph nodes) and it was beautifully contained within a ‘harmless’ tumour. It would have been galling to have such a policy, get cancer and then not be able to claim because the cancer wasn’t serious enough. There aren’t many times you’d get cancer and then think ‘Oh, if only I was iller’.

VIII

Docetaxel, otherwise known at Taxotere, or T, is a different animal to FEC. I knew I would have to learn all over again how it affected me, and when I felt bad or good.

I had no nausea. I was still prescribed nausea pills – albeit far fewer than when on FEC – but took these anyway rather than take the risk. It wasn’t that I felt more tired. It’s hard to explain. Everything was just really difficult. Sitting was hard to do for long, so was lying down, so was walking about. So I spent two days restlessly interchanging between doing some work, pottering about, lying down for a few minutes (without any possibility of sleeping) and then starting again. It was impossible to get comfortable. Steve had bought me some jigsaws as I had said that on bad days I needed something to occupy myself that I could dip and out of but wasn’t too taxing. The jigsaw was enormously taxing. But it added another minutes absorbing activity into my restless daily cycle. Work, wander, jigsaw, lie down. Repeat. That filled an hour. And another hour. The day felt long and boring. And difficult.

When the working day finally ended I went downstairs to make dinner. This took longer than 15 minutes, which proved to be a problem, as I couldn’t concentrate on it, or even stand, for much longer than that.

T has other exciting new side effects. While there was no nausea, it did impact on my appetite. I had none. I didn’t feel hungry - ever. I ate and drank because I knew I needed to, but having eaten, I didn’t have any sensation of fullness or satiety. Nothing. It was odd. The metallic taste was again ever present, but for the first time it affected the taste of food. Nothing tasted. So there was no pleasure in eating or drinking therefore these things were reduced to the vital body fuels that they actually are.

My injections started on day 3, rather than day 5, as T kills your immune system more rapidly. The injections gave me heartburn, so that reduced further what I could eat. Anything slightly spicy or acidic was off the menu, so there was no way to liven up the dull, tasteless food into something enjoyable, as I  wouldn’t be able to eat it.

T can give you skin rashes. I have a very mild allergic reaction to plasters and dressings. This never usually causes a problem, unless a dressing is left on me for some time. When the Herceptin and chemo had been administered, the line was held in place with sticky dressings which had never previously been an issue. But now, everywhere that the dressing had been soon developed into a red, itchy rash, all round my port. After a couple of days the skin started to blister and suppurate. A week later it had dried out and was starting to improve, but was still red and itched to the extent that it would keep me awake at night.

Then there’s the pain. I didn’t get the pins and needles in my finger tips, or loss of sensation, but I did get the pain. It felt as though all of my finger tips had been slammed in a door. The pain was around the nail bed, so anything that required use of fingers became a challenge. Such as opening tubs of coleslaw, picking things up, writing, typing, pulling on leggings and dealing with buttons. Oh my, buttons had now become the invention of the devil.

There was other pain too. T affects nerves and muscles, so you get aches and pains in your joints. You need to add into this mix the fact that the injections also cause an all over flu-like body ache. But now aching ankles and knees also were added into the mix. I didn’t want to live on painkillers unless I really needed them – there were more than enough drugs that I was pumping into my body already.

With the combination of the injections, and the damage caused by the chemo, my heartburn was becoming bad, so bad that it was making me nauseous. I had been given pills to help with the heartburn, but having read the side effects, had decided to try and avoid taking them. Among the most common (1 in 10 people) side effects was nausea, vomiting, headaches and diarrhoea. The main reason for easing the heartburn was to help with the nauseous sensation it caused, so these possible side effects weren’t worth the risk.

And then, the final insult. FEC had given me downstairs thrush and I had also had a sore bum for a few days. T was just a little bit more vicious. And I’m sorry, but things get graphic here. My anus was itching to the point of madness. I had already been kept awake for two nights by it. On the third night I was up every hour trying, in vain, everything I could think of to try and ease it. When the longed for morning arrived, I looked up itchy arse on a cancer forum. And here is what I found.

 

This is an extremely common and never spoken about side effect. I was mortified. Yes, it is the final indignity, but let’s not make that worse by never mentioning it and leaving thousands of people to suffer alone, and in silence. The forum chat was fabulous. One girl had initially posted the query, only for dozens of others to share their experiences. Someone had found using her facial cucumber wipes wassoothing. Another mentioned yoghurt. This then descended into discussions about the potential effectiveness of tzatziki, but one girl was concerned about putting her boyfriend off the dip if he associated it with its being smeared between her bum cheeks. In order to really scratch the itch, one girl had suggested to her boyfriend that if ever he fancied a trip up the marmite motorway, now was the time. One girl’s partner called it dinosaur bum – megasaurarse. But the comment which had me laughing out loud was in response to the general advice to use anusol. The girl posted ‘today I went and got some anusol and thought to myself, if I don’t like it, I can shove it up my arse.’

Joking aside, I had the answer and Jon went scurrying off to the chemist. ‘No it isn’t for me’, he explained to the pharmacist, ‘it’s for my sister-in-law who had breast cancer and is now on chemo’. A knowing smile crept across the pharmacist’s face (that’s how commonly known this symptom is). Jon leaned in and whispered ‘and she’s got one hell of an itchy arse.’

With FEC, I was a bit under par for 3 days and then started to bounce back, which nicely coincided with the weekend. While on FEC we hadn’t need to cancel any of the plans we had made. You don’t bounce back so quickly from T. I had intended to go to a hen party on Saturday night. That wasn’t going to happen. The next day I had a McDonalds breakfast -  a clear measure of how not me I was feeling, then we went for a walk along the sea front – partly because I needed to get out of the house, and partly because I needed to keep active. That evening we went to the pub for the scotch egg cooking contest. I was feeling a little better, but people in the pub said that they could see in my face that this time I was suffering more. The girls who had been at the hen party were a little fragile. The stag wasn’t much better – he still wasn’t back on solids yet. My body felt as though it had had a fairly full-on night out, without having left the house, so I could relate quite effectively with the quiet, gentle groaning.

On Monday I was starting to feel a little less drugged and restless and was contemplating going into the office later that week. Granted I still had an itchy, sore, oozing rash, an itchy rear, serious heartburn, sore fingers and an aching body. On the plus side ,my toes nails weren’t sore. And there were other side effects available which I had not been blessed with. But by Tuesday afternoon it all came crashing down. I felt hideously sick, tired and in huge amounts of pain. It seemed slightly unfair to have given me a day and half of thinking that I was turning the corner, only for it to do this to me.

The heartburn was so bad that I now took the risk of taking one of the pills.

That night, armed with anusol I went to bed hoping for a good night’s sleep. At 3.17 am I woke up in terrible pain. I had a headache that you only really deserve after a skinful of alcohol and my back felt as though a stream roller had been over it. I gave in. I needed painkillers and went downstairs to get some. Then the nauseating heartburn kicked in and having taken the painkiller, for a few minutes I had to try hard not to throw up. It seemed a cruel and unnecessary trick to play. T really is the gift that keeps on giving. I wondered if the headache was from the heartburn pill, and decided not to take any more of those.

And at this point my default position of having a positive attitude started to waiver. It just seemed harder this time. I couldn’t see the light at the end and it started to get me down. Steve would cuddle me and ask how I was, at which I would immediately start crying. I felt horrible. I didn’t recognise who I was anymore. I walked around like a 90 year old because of the back pain and discomfort in my leg joints. And on top of that I had all the other unnecessary, irritating niggles all specially designed to make the situation that little bit worse. I knew this wouldn’t be easy but I needed to know when I would start to feel like a person again. Just getting from morning to evening was a challenge, and I longed for an undisturbed night’s sleep.

Given how useful the forum had been in relation to treating symptoms, I went back there for information about how long it takes to get over the initial effects of T. I had expected to find information indicating it took longer than FEC but by, say day 11 or 12 you were getting back to normal. But that isn’t what was there.

It was not uncommon for people to have not recovered by much by the time of the next infusion. 9-12 months recovery were regularly quoted, and occasional, more ridiculous assertions of 2-3 years. There was talk of teeth falling out, muscle weakness, fatigue that lingered long beyond the end of treatment. And pain. Lots of pain. The pain I had was not even in the same league as the pain that some of these women had experienced.

I still thought of myself as a fit person – despite the marked drop off in gym attendance. But the idea that I might need to stop for a rest halfway up the stairs really was the final straw. And the concept of dentures, obviously.

I felt myself welling up again, and almost decided that I was done. Finished. No more T for me thank you very much. I don’t care how effective a breast cancer killing drug it is.

Steve came back to work from home for the day, knowing I was low and suffering. We had a hug and I carried on working. I appreciate that might sound a bit mad, but maintain normality was important, as was the distraction. If I was working, then I wasn’t lumbering around on the sofa, uncomfortable, itchy, in pain, wallowing in self pity. Before all the started the Macmillan meeting had warned us about depression. They said that if you felt down, set aside some time to really get upset about things, and when that time was finished, then stop – and carry on.

I don’t know if it was remembering that, or the presence of Steve (an empty house when you feel unwell is particularly lonely), or whether I just didn’t want to be this person (Steve reminded me that part of the problem was that I just don’t do ill. I don’t understand it and am not very good at it). But then and there I said to myself ‘enough’. Yes it’s difficult. But I’m stronger than that. There are two more to go and I can do this. We’re talking about another 49 days out of the whole of the rest of my life where I might feel a bit below par. There is no way I will take a year to get over this.

‘The people on those forums are those with something to say, something to get off their chest’, Steve had said. ‘All the people who are feeling good and recovering well aren’t on there’. He had a point. I couldn’t take a minority viewpoint. The itchy arse forum was different – they were all light hearted fun filled women sharing in a common and unpleasant side effect with life changingly useful advice.

There never seemed to be a day go by when some part of my body was not under repair of one sort or another. Now it was the turn of my nails. Knowing they were at risk of lifting or getting infections underneath I started to put tea tree oil on them, from a recommendation received by the Look Good Feel Better group prior to chemo starting. I realised too late that it comes out the little bottle faster than the dropper top would have you believe. The best ploy was to apply it using a cotton pad, which I was already getting through at industrial rates given my very particular morning and evening face cleaning process.

To try and save my depleting eyelashes, and based on how effectively I had kept my eyebrows, I started to put Vaseline on them. Well that’s a really good way of making you feel as though you have a hefty dose of conjunctivitis, I can tell you.

Maybe it was my attitude, maybe it would have happened anyway, but I started to feel better. Plans for going into work had to be postponed but I knew I was coming back again. Having missed the hen night, I was looking forward to going to the wedding reception at the weekend. A friend at the pub had said ‘yes, come along, let your hair down’, and then giggled. Given that she was the same person who months earlier had cried while plaiting my soon to be shorn hair, this was a positive improvement on all fronts. We found out later from the groom that when looking through his wedding photos a friend saw a picture of me - wearing the loaned wig - and said 'hasn't that lady got beautiful hair'. A compliment indeed.

All I needed now was to be able to move more like Man than Monkey in the evolution picture when I first got up in the morning.

IX

I did manage to do a full week at work. By Friday I was extremely tired, also the fluid retention in my legs had started. My ankles swelled and walking gradually became more and more uncomfortable. I had read stories from women who have previously had cancer becoming more accepting of their bodies, their lumps and bumps and flaws. I wasn’t getting that vibe at all. I still had very high demands of my body and how it looked. More so now than ever. From now on, it really was going to do as it was told. I am very much in charge and intend to remain so. No flabby bits. No lumps.

Cycle 5 approached quickly. While waiting for my pin-ultimate blood test prior to the 5^th infusion I heard a couple talking behind me. Then the conversation started to involve another person and moved onto the subject of hair re-growth. The man mentioned that his last chemo had been at Christmas. I turned round. He had a decent head of hair on him. I explained my interruption – although I was sitting, bald head exposed as usual, in an oncology department. So the reason for my interest really ought to have been clear. Apparently not as his wife said ‘Oh, I thought you’d had your head shaved for charity or something’. Really? She thought that in an oncology waiting room? I concluded that it could only be because I wore my baldness so proudly and so openly. I looked around – no other bald heads. Some head scarves, some wigs. No baldness.

‘This is ridiculous’ I thought, ‘I’m going to have to be an ambassador for bald women of England’. I appreciate that all women on chemo started out at different points on the confident scale, but for those at the upper end, let’s not shy away from the effect this treatment has. Let’s not hide it. Instead we should be showing other women that yes, I am undergoing chemo but I’m out and about, I’m living my life. I am not afraid. I didn’t understand why I was the only one. Steve and Jon both decided this was because I was special. But also, the current weather meant it was too windy for wigs. And they were uncomfortable.

The day before the next chemo round I managed to get myself onto a cancellation on the Look Good Feel Better course.

Look Good Feel Better was started by an American lady who was known for her looks – and then she got cancer. The effect on her appearance caused depression to such an extent that her consultant put her in touch with a make up artist he knew. The result was so quick and substantial that an idea was born to help other women. So the charity now runs make up and general pampering session for women with cancer, to teach you how to disguise missing eyebrows and eyelashes as well as skin care while undergoing chemotherapy.

In the UK the charity approaches various providers of make up and skin care products and asks them to donate their wares. Consequently while we all had the same ‘things’, we had slight variation in make. My goody bag had items from Lancome, Estee Lauder, Rimmel, Maybelline, Max Factor, Clinique, No. 7 and Nivea and was probably worth the thick end of £200.

The LGFB session did have some amusing elements. Most of us had sore finger tips and most of the goodies came in tightly wrapped cellophane or has small plastic security tabs over the opening. The 3 girls running the course had to mother us by coming round and opening everything.

We were told that dark nail varnish helped to protect your nails. It was unclear why – just that it did. Fair enough, I’ll give anything a go. Note to self to go home and vamp it up.

As was now my way, I attended bald headed. When we sat down, 4 other women took their wigs off, the lady next to me saying ‘I’m going to follow your example’. I was becoming more and more proud of my going out and about without hair. Someone needs to stand up and be an ambassador for chemo women the world over. At any moment in time there are quite literally thousands of bald headed women out there – why do we never see them. I accept that each of these women started of at a different point on the self confidence scale before their current treatment began, but those at the upper end of that scale, surely we should stand united and proud and make this condition less unknown, less feared.

A lady next to me had a long haired wig on. She told me that she once got in the car and got it stuck in the door, so pulling it off her head when she moved behind the wheel. Someone in an adjoining car looked over, a bit surprised, and the lady then rapidly tried to right her ‘hair’ with as much decorum as possible before driving off.

X

At the next visit to the pub it was decided that we needed an infirm corner. There was me with my cancer. One of the other patrons had recently had a heart attack. Another chap was also a former cancer sufferer and had lost a leg as a result of the condition. Then it started to get a bit competitive as bionic man talked about his artificial hips and knee.

It would be the final pub visit for a few days as the next round of chemo was due the following morning. My mother was coming along in attendance for that session, partly to give Steve a break and partly so that she could see the process. This was the first time of having herceptin and chemo in one session so the timings were a bit unknown.

We had Ana again, which was nice. She spoke to a girl accompanying her grandmother, asking if she wanted to be a nurse. The girl replied that she didn’t like blood or needles. Ana said that she didn’t like blood and needles on herself, but didn’t mind stabbing other people. She also wanted the address for my blog, having heard about her presence in it.

She struggled with my surname, calling me macaroon.

Other than when I accidentally disconnected my chemo line, it was an uneventful visit. The disconnection did put Ana into a minor panic, who leapt over to me, saying that chemotherapy could have got everywhere. From her reaction, it seemed that this was a serious event.

When we got home, I went to sleep. However, I didn’t suffer quite so much over the next couple of days. This may have been because I stopped taking the anti sickness medication. I didn’t feel sick and they  made me tired – so it seemed an obvious step to take.

I was cautious after this round. Cycle 4 had not been a pleasant experience. But, while I felt a little tired – well, to be more accurate, I felt drugged and listless – I didn’t have the restlessness which happened last time. Steve encouraged me to go for an evening walk when he got home from work. Initially I wasn’t sure my legs were up to the task, but with each step I felt more revived. The revival did not extend long beyond when we stopped. But it was a positive step.

Then the itching began. And now I need to back track a little. Prior to each chemo I see the consultant to a) go over any side effects which I need help managing and b) check my blood results indicate I’m well enough to be poisoned again. She always seemed surprisingly delighted with how well I appeared to be. I didn’t ever moan about the side effects – partly because, while unpleasant, they weren’t unbearable. I knew I wasn’t going to feel well and in the great scheme of things it was all being managed quite effectively. Also I was being prescribed enough drugs already, all with additional, unwanted side effects. I didn’t want to take more pills unless absolutely necessary. This time, however, I mentioned the blistering rash around my port. She doubted that the chemo had had anything to do with it, rather it was just a reaction to the plaster. She prescribed me with some antihistamine tablets and E45. We didn’t talk about the itchy arse situation. I was already armed with products for that and there are some discussions that ought to be avoided just before lunch.

The prescription had said ‘E45 – one big tube’. When I went to collect it from the hospital pharmacy it was a surprise. Let’s just say that I don’t think I will ever need to buy E45 cream again in my life. The tube was enormous.

A couple of days after the chemo the skin around my port itched a little, but never developed into a rash. The downstairs itching was being kept within tolerable bounds from the anusol. And then I noticed a rash in the crease where my leg joins onto my body. ‘Itchy rash’ I thought. ‘I’ve got just the thing for that’. So I used the antihistamine tablets and E45. The itching was kicked into touch almost before it began.

On day 3 the nasty injections started. I didn’t look forward to them as they seemed to worsen my heartburn. Then I decided to ease the acid problem by sleeping with an extra pillow, to prop myself up a bit. It had taken 5 cycles for this gem to occur to me – for which I blame chemo fog. Anyway, it worked. It still hurt to eat and drink anything that had any more kick to it than plain porridge. But the ever present acid burn sensation was much diminished.

Finally I had got all the side effects under control. Just as I as approaching the end. Overall I had been lucky with side effects. The only ones I had suffered were nausea, tiredness/exhaustion, sore fingers, itchy skin and rashes, joint ache, heartburn, hair loss, metallic mouth taste, thrush, minor and short lived lower limb fluid retention and weeing more frequently. Other side effects available which I had left on the shelf included constipation, hot flushes, vomiting, shingles, mouth ulcers, infection, weight gain, cystitis, losing nails, sore eyes, loss of sensation in hands and feet. Regarding the temporary menopause my periods had now given up – 2 weeks from the end.

I did also have a very sore nasal lining. It easily bled and was therefore largely comprised of scabs. As each cycle neared the end, the scabs were close to healing. But then the next poisoning took place and it would all worsen again. The body clearly has a rigid priority order for healing itself, and nasal lining is placed very near the bottom of that list. You never know when it might be useful to be aware of that. Other than now, obviously.

On the previous cycle I had had a wondrous moment of improvement before dipping into a few days of crumpled joint pain ridden mess. So I was cautious about my improvement.

I waited.

The dip didn’t come. The joint pain was there, but barely so. I had no difficulty walking or standing. This was all going jolly well.

The thing with chemo and cancer is that one is tempted to link any symptoms, any illness, with the condition or its treatment. So when I woke up with a sore throat I didn’t know if this was just harmless coincidence, a side effect or indication of a problematic infection starting. It’s like your inbuilt security alert setting being notched up a peg or two and you have to be careful to avoid getting neurotic about these things.

And now the countdown to the end could begin. This was the last time I would have a recovery week. Next time I would be recovered for good. For life. One more blood test. One more consultant appointment. This time in two weeks the last dose of poison would be given. In three weeks time, it would all be over.

I was already planning a weekend of food for when my immune system and taste returned for keeps. Runny fried egg for breakfast, champagne in the hot tub (which had been out of bounds on account of the bacteria risk), smoked salmon, rare steak, blue cheese.

XI

I was now back in the office again with the intention of doing 2 weeks attendance before the last cycle – aware that I would soon be back permanently and needed to build the strength and energy.

Being at work was exhausting. Well, work was ok. So was the commute. But the twenty minute walk between the station and the office was difficult. It hurt, it made me out of breath, sometimes it became difficult to put one foot in front of the other. Perhaps this was the fatigue they talked of, which lasted for months after treatment.

I bumped into testicle man on the train home and talked to him about by new found experience of survivor guilt. This had arisen due to discussions on the chemo unit with other patients. Many were having chemo pre-op to reduce the tumour size. And I suspected post op chemo would also be needed. I felt bad for having had such a neat and simple cancer, something easy to deal with and cure. When these women asked my situation, I didn’t like to tell them. He understood what I meant. On the ward he had been on, most of the patients were terminal. We had all been dealt our hand at random and it seemed wrong to feel bad about the result – which was beyond any of our control. But the feeling prevailed.

In the paper that day came the news that a 24 year old woman had died from pancreatic cancer. To raise awareness of this highly fatal condition she had fronted a poster campaign which read ‘I wish I had breast cancer’ – which has a 98% survival rate. I agreed with the sentiment. If I had to have cancer, this was the best option. Again, I had been lucky.

My step daughter texted to say a friend of her from work had just been diagnosed with breast cancer. Another of this years’ 50,000. This story will be repeated yet again.

This made me wonder what advice I would give to someone else starting this process. Everyone’s approach is different . But despite that, my advice would be this:

·         Believe in your strength to get through this. Yes there will be highs and lows, but the process is temporary. There is an end point. You will get there. It also helps those around you to stay positive as they will follow your lead.

·         Communicate. About everything. Friends and family may be uncomfortable talking about the condition with you if you seem reticent to bring it up. Encourage your significant other to let you know when they’re struggling to deal with things. Let this bring you closer together rather than drive you apart.

·         Take it step by step. This is a long process. Don’t look ahead to the full extent of what you need to go through. Don’t worry about things that are weeks or months in the future. Focus only on getting through the next part – be it a test or surgery or consultation or treatment. Or simply dealing with the next day.

·         Accept and plan for the change in your appearance. You can’t stop it happening, so embrace it. Talk about the baldness and any body changing surgery with your significant other beforehand so they know your concerns and fears – and you know that no matter what, he still loves you. He still thinks you’re beautiful.

This was perhaps easy for me to say now. I was nearly at the end.