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.