Part 4 - Treatment, the reality

PART IV

 

 I

Ginger apparently helped with the nausea, so I ate a piece of crystallised ginger, which was disgusting. But it did take my mind of the sick feeling.  I felt nauseous that night. One tip that had been given was to keep some ginger nuts by the bed, so that I could have a nibble and ease the feeling without needing to get up. It seemed strange to eat when feeling sick, but the ginger nuts did seem to help.

I had an uncomfortable sensation in my belly. Knowing that the cocktail of drugs I had been fed could cause either diarrhoea or constipation the end result was that I had an unsettled night.

Now that the chemo had started, my crazy rituals began, all aimed at preventing a problem occurring. To protect against the probable mouth issues I was using a soft toothbrush and innocuous toothpaste – yes, products made for a two year old. On the plus side, my toothbrush was brightly coloured red and yellow with cartoons on it, which was fun. On the downside, it was about 3 inches shorter than a grown up toothbrush, which did make the whole process a little more involved. This was followed by an unpleasant mouthwash. Make up removal involved a separate cotton pad for each eye to prevent cross infection, cleanse and tone with no water followed by thorough moisturising. Then application of Vaseline to my lips and eyebrows, moisturise hands and feet and apply cuticle oil. This was more extreme than my pre-cancer routine, but if skin, mouth and nails were at risk, then one had to suffer this pampering accordingly.

The oncology unit encourages normality, so we tried to get out and about. I was surprised how quickly I got tired – that was meant to be next week. Then I read the side effects of my sickness meds. One caused drowsiness and fatigue. That would explain that then.

I had a calendar in which to schedule planned activities and goals. If I managed to do it, I could award myself with a smiley sticker. There were no unsmiley stickers. I started to add sticker after sticker. Things were going well.

We did pop back to the pub. It seemed only fair after all they had done for the head shave night, to let them see how I was doing. I couldn’t cope with more than half a pint of Guinness and, as the landlord didn’t serve it in quarters, he instead filled up a shot glass for me for the second round. Proper lightweight drinking. It was amusing to see the bald headed clan, coming in and emerging out of woolly hats. It was like being part of some secret society or cold war spy ring as they would come up and say ‘do you find you’re still massively overestimating the amount of shampoo needed’, to which we would reply ‘yes, and I find there’s a lot more space in my hat now’.

The landlord realised he had missed a trick as we could have made a mint for the charity by selling Goldie beanies. If the people out there, who watch these things, noticed a spike in sales of bobble hats on Monday, that’s my fault.

It’s fair to say that I’ve always been a bit keen on gazing at myself in the mirror, clothed or unclothed, analysing every millimetre. This was usually accompanied by Steve calling out 'step away from the mirror'. That hadn’t changed but the analysis was different. If I caught sight of myself in the mirror unexpectedly – yes, that scenario did occasionally happen – the scar where my breast used to be often took me by surprise. When I looked at my new body my rib cage looked different where the breast wasn’t, and underneath my left armpit the skin which is normally pulled taut by the weight of a breast sat baggy and spare around the scar. There was the new addition of the alien lump bulging from under my collar bone. And now my close cropped hair was added into the craziness. I looked thin, bony, different, but still, curiously, amazing.

In anticipation of hair loss, I had stopped shaving. In combination with not having been to the gym since the mastectomy, it was fair to say that I was letting myself go a bit. But I longed for the day when my armpit hair came out. I still had no sensation in my left arm pit and since, the portacath operation, I couldn’t yet lift my arm high enough to be able to see it. So shaving an armpit that I couldn’t see or feel, knowing a scar ran through it, was nothing short of alarming. Hence I was looking a little European in that area.

Day three was the worst in terms of nausea. It wasn’t unbearable and I never thought I was going to be sick, but the feeling rumbled away in the background. I had started to put pieces of crystallised ginger in my morning porridge to ease it. Another tip had been 'don’t eat food you like when on chemo or you will forever associate it with nausea'. This was only week 1, but already even the word ginger raised a gag reflex in me. Once this was over, I doubted I would ever eat it again.

By day four I felt great, although my lips were crumbling and the lining of my throat and nose were sore. On that day I also realised I hadn’t been taking my full quota of sickness meds. This was a huge comfort as it was quite likely that next time round the mild nausea experienced so far could be kept entirely at bay. Working from home was going well and I was keeping up with all the tasks I had intended to do. I felt good enough to meet friends for dinner and go to a local pub to watch a band, and even suggested to Steve that I felt a little bit horny.

The following day Steve and I had a black tie party to attend. Of all my evening dresses, there were only three that I could now wear as a one breasted woman. From those three, I made my choice for this event. However, under my arm (if I lifted it) you could clearly see the mastectomy scar rise up to my armpit. The shoulder strap just about hid the port scar, but the port itself bulged prominently like a strange bone. It was, however, a good night and either no one commented, or chose to politely ignore, my scar and lump.

When we got home we administered my injection. The purpose of this was to boost my bone marrow and encourage the production of white blood cells, to reduce my infection risk. The doctor had warned that the jab would give me aches and pains similar to flu, so suggested taking a paracetemol and going to bed.

About 20 minutes later I couldn’t breathe through my nose. It wasn’t bunged up, it just wasn’t working.  My pulse raced and my cheeks burned. Lying down was difficult as it made my chest close up. I sat up, coughing, gasping for air. Steve got me some water and suggested that I try to lie down, and breathe more calmly. After about quarter of an hour the pressure on my chest eased, and my nose started to clear. I got up to go to the loo as I had some tummy ache.  It felt as though everything I had ever eaten in my whole life now wanted to leave my body. By the fastest route possible. I felt sick and a pain in my lower abdomen grew into a raging agony. I cried out helplessly, writhing like an animal, contorted with pain which could not be touched.  Now I am no wilting wallflower. I am a woman who has spent the last decade of my life rock climbing, gorge walking, skydiving, climbing mountains and training with the military. I spent three months training to the do the civilian version of the Royal Marine Commando test, and undertook the ordeal with my legs strapped from ankle to knee due to the injuries sustained during training. I spent my honeymoon in a tent, at altitude, trekking the Inca Trail.  I could take pain to my body. But this was unbearable. Sweat was running down my back and my feet had turned blue. I wasn’t sure if I was feeling sick with the pain or as an additional side effect from the injection. Now for some biology - the contents of your stomach are acidic. The oesophagus, leading to your stomach is not. Under normal circumstances, these two areas would never meet. However, human beings are blessed with the potentially life saving ability to regurgitate.

For a normal person, this is fine. You’re sick, you burn your throat with the acid from your stomach and your body sets to mending it all.

For someone 5 days into a chemo cycle, it’s a little more complex. My throat lining cells were already dying and not being replaced. Being sick would add additional burn issues, and the potential for infection. It would not be a great situation.

Steve suggested coming back to bed, and lying there in pain instead. But I couldn’t even stand up. It was slightly easier walking about.

‘This is meant to be doing me good’ I called out to Steve ‘I can’t do this for 5 days’. 'Take a paracetemol and go to bed', the doctor had said.  It wasn't quite that simple. No ordinary mortal could have slept through this. It was easier to be up and about, moving around, gently walking to and fro across the landing. After about 40 minutes there were moments, brief moments, of relief. The pain lessened. Slightly. And then rose again into a crescendo of ecstatic agony of wall clawing suffering. Each time, the drop lasted slightly longer, and the peak was slightly less horrendous.  Just as the pain subsided into the gentle throb of something tolerable the nausea rose and I rushed to the bathroom where I was comprehensively, violently sick.

Steve gently stroked my back. ‘I suppose you aren’t feeling horny any more’ he said.

II

Back in bed my throat burned and my mouth kept salivating. I was freezing and couldn’t get warm. I lay awake a lot and dozed occasionally, fitfully.

The following morning I felt grey, drained, tired. And in desperate need of calories. My body ached all over as if I had flu. If I had a onesie, I would have worn it. My mother had said that chemo can cause personality changes. I had scoffed at her but here I was craving carbs and a chav outfit. Perhaps she was right after all. I ate every couple of hours, adding cream, sugar and fat to everything.

I called the hospital 24 hour oncology team number to talk discuss whether I should take the next dose, given how I had reacted.  They said that such a reaction was unusual. ‘Try one more’, they said. The prospect of that weighed heavily on me all day.

We had a new plan of attack for the injection that evening. Take the painkiller an hour beforehand – as advised by the medical team earlier that day, inject my thigh instead of my tummy and stay up, walk it off, be upright when the breathing issues come. I never even felt Steve inject me, but once done, I paced the living room and did an enormous amount of lunges. A slight tightness spread across my chest and I was short of breath momentarily – but it was poles apart from the previous night. And then nothing. No pain. No issue. No problem. We repeated this pattern for the rest of the jab routine. If anything, it got easier every time. And Steve’s proficiency was incredible. He even started doing the nursey thing, saying ‘small scratch coming up’ (when what they really mean is ‘I’m going to stick needle into you and that’s what it might feel like'). We decided that my illness on the first night was probably entirely unrelated, a strange, unpleasant aberration.

Perhaps it's just that my body decided I ought to suffer a little bit during this. I’m meant to be battling a nasty illness and, quite frankly, feel suspiciously well. The port operation was now healing up well, and I had mobility back in my left arm. This was a relief to Steve, who had previously looked on resignedly as I dressed myself in clothes that I couldn’t possibly take off by myself, and which were sometimes a challenge for the two of us. Now these things were no longer a problem.

As I would spend a week or so mainly having no immune system, I was rigidly strict about the list of suggested foods to avoid. In fairness, I had already been following it, but now I needed to send round my new, onerous dietary restrictions to the various dinner events we had coming up. And the foods to avoid included so many of my favourite things – pate, feta, blue cheese, parma ham, runny egg yolk, smoked fish, pink meat, raw fish or meat. 

I was also giving myself a weekly weigh in. Our scales claim to be awfully clever and tell your percentage body fat and muscle as well. I was losing weight, despite not having been off my food at all. If anything, I was hungrier than ever before. We would have a decent dinner, but by the time we went to bed, my tummy would be rumbling.  It was different to greed. I’ve always been greedy but that has nothing to do with hunger. It’s want, rather than need. This was hunger – a whole new, exciting experience. No one could call me greedy now. I have cancer, I need the energy to rebuild my immune system, I must eat all the pies. Immediately.

Some of the other warned about symptoms were starting to put their heads over the parapet. My mouth wasn’t sore – which was a good thing. But it felt disgusting. It was rough and lumpy. I continued with my oral hygiene programme with much dedication so that I could continue to get away with it not being ulcerated or painful.

Even the fatigue wasn’t really hitting me. Only on one occasion so far had it felt as though my ‘on’ switch had been turned off. I had expected this to continue over subsequent days – but it didn’t. So far, I was getting away with this incredibly and suspiciously lightly.

III

As a matter of routine Steve and I have a pretty busy social calendar. If anyone wants an audience with us over a weekend they usually need to book us up several months in advance. Our plan of action, when all this began, was not to cancel any existing arrangements but be circumspect about booking in new things. Consequently the calendar for 2014 was looking eerily quiet. And while I had so far managed to keep all the engagements in the diary, we did approach our upcoming back to back party nights with some caution. What’s more, they were both on school nights and therefore preceded by a day of work – as opposed to rest.                                                                                    

And working was definitely a preferable option to day time TV. If I may momentarily deviate from the subject in hand; despite having been instructed to become a Jeremy Kyle expert while I was working from home, day time TV was unwatchable. But I could understand how those who don’t work have no financial incentive to do so. If I took it seriously I would never need to work again. All I needed to do was sell the contents of my attic, have regular accidents that weren’t my fault and exchange all the gold I could lay my hands on for cash. For some extra pocket money, film something mildly amusing and send it off to You’ve Been Framed. If things did start to get a bit tight, I would have time to understand Deal or No Deal and apply to go on the show. No wonder some people made successful careers out of not going to work – all the hints and tips and advice you needed was on a perpetual TV feed, deliberately broadcast during working hours so that those at the daily grindstone were none the wiser and therefore had to remain a martyr to the daily grind.

Back to our parties. The first event was the GRRC Christmas ball. This was on the same day that my head shave event received almost full page coverage in the local press. I would have been catapulted into local fame had we not bought almost all the locally available copies of the paper. The journalist did incorrectly say that I was commuting to London, which of course I had stopped doing. I hoped that my consultant wouldn’t read it and tell me off at my next appointment.

The GRRC ball was the first time I had worn my wig out and about. I hadn’t worn it for the rugby club Christmas dinner and, with my close cropped hair and slight weight loss, had felt a bit thin and bony and potentially looking like an ill person. But there I had been surrounded by people who knew us and knew what was going on, so there no point in trying to hide it. The GRRC do was different.

The hardest thing was to avoid fiddling with the fringe. I had trimmed it a little but didn’t want to make it too short – partly because once cut, that it was it. A wig doesn’t grow back. But also, I was mindful of the upcoming loss of eyebrows. If the wig fringe lingered around the eyebrow line, then their loss (or rather, my shabby attempt at drawing them back on) would be less obvious. But having hair constantly wafting around my eyes was irritating. This added to the general discomfort of the wig. It was warm and itchy. I also wondered if anyone realise or if I was getting away with it. I had once seen a programme about trans-sexuals and the phrase they used with regard to whether anyone realised that they were not what they seemed was ‘did I pass?’ I now felt like that. I spent dinner chatting to a gentleman next to me. He was in close proximity and to hear each other over the general hubbub, sometimes we moved our heads closer. Occasionally I saw his eyes flicker up to my head. Did I pass? Or did he think something was amiss? Had I scratched my head and accidentally moved my wig to a suspiciously jaunty angle? Maybe he was just looking at the fringe thinking ‘I bet that’s irritating her eyes’.

I had sent through the onerous list of my dietary limitations. Goodwood usually serve up things such as crab soufflé and Goodwood lamb, served rare. So I had been surprised to get an email back confirming that the menu did not conflict with my requirements. And indeed it didn’t – truffle tart followed by guinea fowl.

After the fireworks we headed home, not wanting to push our luck too much. I was eager to get the wig off, but Steve thought I should wear it all the way home. This was a brief moment in time when he could quite literally use the phrase ‘keep your hair on’. I took it off as soon as we got into the car.

The following night’s event was the Sea Shanty aboard HMS Warrior – and there were ten in my party and we usually dressed up as pirates. This year was no exception. Instead of my proper wig, I had a cheap, fun pirate wig. This proved to be useful as my pirate top was low cut and it was difficult to hide the prosthetic. So I draped my red and black pirate locks over it. There was almost a domestic between friends of ours when she realised that her husband had failed to put the correct boots in the car. She had planned knee length black boots with her outfit – but was left with brown ankle boots. When she complained to him that she would now look silly he pointed out ‘look, we’re dressed like pirates’. He had a point. Suitably kitted, hatted and armed we ventured forth for some rape and pillage – seated at tables between the cannon on the gun deck, we had a hearty dinner of barrel bottom stew followed by a sing along with Shep Woolley. For a moment or two it looked like it might all be called off when the band plugged something in which caused a small bang – followed by total darkness. Most people on the ship had a small torch so the tables between each cannon had a small glow of light on them. I wondered if this was how it would have been, back when the ship was in service, 150 years ago.

The lights came on – to a cheer from the crowd – and immediately went off again, to which the crowd groaned. But before long, normal service resumed.

After all that, I got up the next day and raked the garden before heading off to lunch with friends – and a teeny weeny bit of handbag shopping. Early that evening, unsurprisingly, it felt as though someone had pulled the plug out and I completely shut down. By which I mean, slept. The boys went off the pub for the evening. I went to bed. And I had rake ache. I woke up at 11am the next day, which fortunately was a Sunday.

Feeling very rested, we went to the gym. I wear lycra to the gym. Lycra is relatively unforgiving – which is fine. But it did make it quite clear that something wasn’t right in my chest area. I was aware of some lads looking at me, and trying not to, but recognising that something was amiss – or missing – and were clearly intrigued by this. Just wait till I come in with a bald head, I thought to myself.

On the subject of hair, it was now two weeks since I had had it cut off and I was now feeling a little bit guilty about still having hair, and even tugged on it regularly to check the strength of its attachment. All the information suggested that it should start to fall out imminently, and I almost wished it would.

IV

 At my weekly home weigh in I had clawed back 0.7kg of weight (but was still under the weight I had started at). What was more, this weight was muscle mass rather than fat. The gym visit and rake ache was worth it.

 

The coming week was a busy one. I was due to go into the office – primarily so that I was present for the office Christmas bash. Originally I had only planned to pop in and say hello, but my boss then needed me to do a number of things, so before I knew it, I was planning to go in at lunch time. The journey up was enormously exciting. It was a crisp, bright morning and I walked gently from Waterloo over Jubilee Bridge. By the time I got to Charing Cross I fancied a sit down, and when I reached St James’s I was reasonably tired. I used to walk this twice a day – at a fast pace. Fortunately I had a moment’s pause, when I passed a shop proudly advertising that before long this would be the Osprey flagship store. Uh oh. I had about 15 Osprey handbags. Having a supply of them this near to the office may be dangerous. I do not need another handbag, I repeated to myself.

After an afternoon of work, catching up with people and showing off the new close cropped haircut I headed off to meet Steve, check into the hotel and ready myself for the evening. The party was fantastic. However, it was the first time in several weeks that I had worn heels all day – and my feet were killing me. Again I had sent my long list of things I couldn’t eat, and now looked at the menu with trepidation. The starter was cured salmon. I was concerned. However, the system worked  as I was given cheese soufflé instead. Hurrah. And well cooked duck – which I know was necessary but seemed a terrible shame.

As the party was at the BAFTA building, they had a series of generally humourous nominations and awards. This included Woman of the Year. One of the nominees was me, for the positive approach I had taken with the whole cancer thing. And then the winner was announced. The wall was filled with the picture of me with bunches and with my grade 2, as my name was read out, and I was given a superbly plastic, no expense spent BAFTA. It was a fantastic and touching gesture. But I hadn’t been deliberately positive. This was my default approach to life, and while I felt so well, it was quite easy to carry on as normal. I left sooner than I wanted, but before the tiredness kicked in. In chemo world, they call it fatigue and, in fairness, it is different to tiredness. I had only experienced it a few times, but initially it hampered my ability to hold a conversation. Then walking was a bit much, and then even standing up. As Steve guided me back to the hotel I felt that my ability to talk was becoming slurred. I had left the party on time.

The following morning Steve noticed a lot of hair on my pillow. As is usual with hotels, the bedding was white. So it was quite obvious. We don’t have white at home and therefore wondered if it had been coming out previously. But I had been regularly pulling on it – to no avail. Now when I tugged at it, the whole clump came out. Steve suggested charging a pound a go to pull some out. While it had been resistant to pulling before, I had noticed that the hairline around my temples wasn’t right and some balding was occurring. Now I could tidy that up by pulling out the surrounding hair, so that the overall effect was a cleaner hair line – albeit a centimetre or two farther back from where my natural hair line used to be.

Every time I was within reach of Steve he pulled on my hair. He wondered what else was loose, and yanked at the old lady garden. Yup, that came out too. For a while, sorting out my bikini line would be very simple.

We headed into the office. It was 9am and Waterloo was filled with commuters. I hadn’t organised myself properly and stood at the underground barrier, fumbling in my (Osprey) handbag for my Oyster card. I was mortified to be that person. Within the space of 3 weeks I had lost the ability to function in rush hour London.

Down in the underground, the wind felt peculiar through my short, thinning hair.

After a couple of hours in the office we headed off. The party, the journey and the excitement of being around people soon took it out of me, and I slept for a few hours later that day.

 

My hair continued to thin, mainly on the sides and I was concerned about being left with a slightly stunted Mohican. What’s more, one side (the side I slept on and which was therefore rubbed more) was thinner than the other. So the overall look was becoming odd. What was more unpleasant was that during the night I tended to get into my mouth some of the multitude of the short hairs which had shed over my pillow.

On the plus side, I was still getting away with not suffering other known chemo side effects. I had been warned about the likelihood of menopausal symptoms. Now, I wasn’t really sure that this would be bad. Firstly – no periods for 5 months could only ever be a good thing. Secondly – it was winter and in the event of a hot flush, I could just step outside for a moment. That didn’t seem too onerous. Finally, and more dangerously, the nurses advised wearing clothes I could get out of quickly in the event of a hot flush. I thought that this might send the wrong message to Steve. I could just picture the moment, feeling myself burning up and saying to Steve that I needed to get my clothes of as quickly as possible. He would look over and see a pink cheeked, half naked woman and quite naturally think that I had something entirely different on my mind. I might stick with stepping outside and cooling off in the wintry air.

V

Gym visits had lessened further. On the last trip I noticed that the tubing out of the port seemed closer to the surface than usual, pushing against the underside of the scar. Note to self – avoid pec deck while you have a device installed in, well, the area of your pec’s.

My hair was now thinning fast. We went out for a big family dinner on Saturday night and bits of hair covered my napkin and the table cloth in front of me. Before going out we had popped into the pub and as I rubbed my thinning sides again Steve said ‘If you stop rubbing it, it will stay there a bit longer’. One of the other patrons raised his eyebrows and muttered that he had thought something along those lines before. Steve was still pulling out chunks, leaving peculiar gaps in my hair. He grabbed one tuft from the front. I asked if it looked silly and whether he could tidy up my hairline. ‘Yes,’ he said ‘if you want your hairline an inch farther back from where it is now’.

Out at dinner he persisted with his charging idea and offered his brother a £1 a tug. They’re filthy minded boys, so this immediately needed further clarification. One of them had thought that this sounded like a bit of bargain.

Another issue I was finding with my increasing receding hairline was in terms of moisturising and putting on make up. It was hard to know where my face stopped and my head began when there isn’t any hair there to guide me. My hair line at the side now started somewhere behind my ears.

I washed my hair for the last time. I didn’t know it would be the last time, but after washing it I looked at my body which now had the appearance of a new born yeti. I spent most of the shower time washing bits of hair off my face and body. Then I had to dry it and consequently covered the towel in yet more hair. It was a complete mess, and not an experience to be repeated.

My weekly weigh in showed another small weight gain, but still more body muscle than body fat.

As my next round of chemo was imminently due we decided to go to the pub, as I wouldn’t be feeling up to it for a few days after the next cycle. My newly bald head wasvery sensitive to the cold so I wore a headscarf. When we went into the pub one of the regulars said ‘Have we got muslims coming in here now?’  I removed the scarf, and displayed my curious hair style. I explained about being chilly round the ears. One of the other chaps, also a bit thin in the ear area, said he knew what I meant.  ‘Ah,’ I said to him ‘you must have the same issue as me when moisturising’. I didn’t get much further as the pub descended into loud guffaws. In fairness, the chap concerned looked at me, nodding politely.

The next day I went in for more chemo. This time I had a Portugese nurse attending to me. She looked at Steve and said he had good veins. Then she looked at my veins. One of the other nurses explained to her that while in Portugal this may be a compliment, in England people would just think you were a bit odd. Then she said Steve was Santa shaped. Perhaps in Portugal that was also a compliment.

During the morning she said one of the doctors had insulted her, calling her pumpkin, and that this must have been rude as a pumpkin is a squat, round, lumpy thing. I said to her that it meant the same as telling someone in Portugal that they had good veins – whereupon she high fived me.

Inserting the needle in the port was completely fine this time – but then I had had numbing cream on, although I reacted slightly to the dressing. Then the cocktail of drugs began – fizzing in my lady bits, giving me ice cream head, then the chemo etc etc. This time the chemo seemed to make me more light-headed than before.

She warned that more hair would fall out. I was amazed to still have so much. She looked at the top of my head. ‘You hurt your head as a baby’, she said, ‘you have scars’. I assured her that I would have words with my mother about how I fell on my head as a child, but really the gaps were due to the lumps that Steve and I had amused ourselves pulling out when my hair started to be less firmly attached. I didn’t like to admit to her that we had just been playing around.

As we were there over lunch time, I was brought a snack bag – sandwich, yogurt, biscuit, fruit juice and an apple. This was shaping up to be an alright morning out.

This round of chemo seemed to hit harder. Last time it had been administered in late afternoon so I had been able to come home, have dinner and go to bed. But this time I came home after lunch, and logged onto work. The nausea kicked in early. 

Being in a separate room to my phone, I missed the personal call from Breast Cancer Care, thanking me for the donation. They left an extremely kind and touching message, referencing the fun pictures on the Just Giving page and the amazing support. This was followed shortly afterwards by an equally generous letter.

The next day the nausea was still there. Looking back at my diary from cycle 1, I noted that day 3 had been the worse day for nausea – no other times had it really been that bad. So I wasn’t looking forward to Friday. On Friday I was tired beyond belief. I tried not to do any work which required accuracy, or intelligence. Despite taking the full hit of meds this time, it didn’t abate. I was eating fewer ginger nuts. Perhaps that had made a difference. But the thought of them, the word ginger, still turned my stomach. The other side effects noted in the diary were coming back as well – revolting feel and taste in my mouth, the weight loss.

Having had reasonably active times planned in my Activity Goals diary (the Macmillan Organiser does like one to keep all these records) the coming week looked very bleak. Suffering from cabin fever, I suggested that we pop out to the pub briefly, just so I could get out of the house. That hour took it out of me. I hoped this would soon pass. It was Christmas in 5 days and we were hosting.

VI

While a brief menopause was virtually promised, although it was still a little too early to know if this would come to pass, nothing had been said about whether PMT also passed. The reason I mention this is because I am an emotional PMT-er, as opposed to the scary, aggressive, shouty types. And I was becoming irrationally emotional. The slightest thing would set me blubbing. One evening, shortly after cycle 2, I started sobbing in bed, suddenly overcome with an aching sense of loss for Dudley. Admittedly, with everything else going on at the time, I had barely mourned him. But it still seemed strange to miss him now, so painfully. But it seemed unfair to still be left with PMT.

And at the weekend, Steve and Jon went out for a boys' night out. They came home by taxi, late and inebriated. As they got out of the taxi Steve looked around and said ‘Where’s Tom?’. To which Jon replied ‘She hasn’t been with us all evening’. But it was nice that in that moment of drunken fuzziness, he knew that part of him was missing. In fact, I had spent the evening finishing wrapping Christmas presents, planning the cooking schedule for Christmas day and getting the ironing done. So all jolly fruitful stuff.

There were foods that I was starting to miss. Runny eggs in particular. And I’m sure this had nothing to do with Steve insisting on eating runny fried egg sandwiches for breakfast over the weekend. Smoked salmon was being advertised on TV a lot – that was tough. And soon the boys would be making home made pate, for Christmas day. Missing out on that was not going to be fun.  'When all this is over', I thought, 'I’m going to do some serious eating'.

Now, I had been proudly referencing my not quite full head of hair. I had noticed that the crown of my head felt a bit odd, and asked Steve to look at it. ‘Does the hair look a bit thin there?’ I asked him. ‘What hair?’, he replied ‘you haven’t got any there’. Slightly incredulous that no one had mentioned to me earlier that I was bald from behind – given that this is a part of me I don’t generally have a tip top view of, I asked him to take a photo. He was right. I had a proper, old man's bald spot on top and significant thinning all round the sides, in addition to the already bald areas around my ears. Deary  me – might have to start becoming a bit more proficient with the head scarves now.  I had previously tried a head scarf style at a Harlequins game a week ago – and it was rubbish. One of our friends had said I looked like Yasa Arafat. Thinking about it, that may have been a compliment, given that if there’s anyone who knows how to tie something on their head in a jaunty manner, he would be high on the list.

Even so, I conceded that there was room for improvement.

On the plus side, I still had eyebrows. And still plucked them - guiltily.

VII

I openly admit that I had rather got away with it in cycle 1. Not any more. The nausea persisted. To add to matters, the injections this time round were not quite so unproblematic. We followed the routine established in cycle 1, after the first disastrous incident, of injecting into my thigh after which I did a lot of lunges to get it moving round my body as rapidly as possible. However, whilst last time I had had a couple of horrific hours and then, broadly, no symptoms at all, this time the same symptoms occurred but spread gently over 4 days - except the throwing up. That never happened again. To accompany the flu like aches and pains, I also got a cold. Well, excessive sneezing to be more accurate. My nose was already runnier due to the reduction in nasal hair. And at night I would lie in bed, aware of the ominous volcanic rumbling in my guts. Last time I had heartburn from having been sick. I wasn’t sick, but felt sick, and still had the pleasure of heartburn for a few days.

The net result was that I felt ill-er for longer. Despite eating ravenously to combat my perpetual hunger (eating also eased the constant heartburn) I couldn’t keep pace with my body’s need and lost half a stone in the space of 3 days – over Christmas.

Now, about Christmas – having left the shopping for lunch until the last minute, I shouldn’t have been surprised by the lack of sausage meat. So I bought sausages and spent an amusing afternoon squeezing the meat out, leaving a pile of empty skins, which had the appearance of used condoms.  I needed to wear a head scarf to prepare the feast for the morrow as I was now moulting profusely – and none of the recipes I was using seemed to include handfuls of hair.

Bro the younger sent me an inspiring festive email which read ‘Hey Thom, hope you’re not regretting your family dinner idea yet. Enjoy all the brandy butter, you’ve had a hell of a year. You’re a remarkable and unparalleled inspiration of positivity. Hugely impressed. Long may it continue’.

Personally, I think he was being a little generous.  In 2013 he had made a person in the form of his first born son. That seemed a much greater achievement and long term commitment than having bits of your body cut off.

When I woke up on Christmas day my gums were bleeding and it hurt to open my mouth. I was also still losing weight as fast as I could put it into me, thanks to the ‘make me better’ injections. Despite this, we managed to host a successful lunch without anyone appearing to notice – or certainly being too polite to mention – my poorer state of health. That evening, unsurprisingly, I was tired.

Wearing head coverings was becoming uncomfortable as my hair would fall out inside the hat or scarf and then the multitude of small loose hairs would prickle me. My remaining hair was also now quite thin and patchy, making it less likely that I would go out uncovered. So on boxing day Steve used the clippers to give me grade zero cut all over. This still left me with very very short hair but it looked tidier. My head felt incredibly sensitive. And stubbly. That night was interesting – when I lay on the pillow and in any way moved against the stubble, it was remarkably uncomfortable. On the plus side, it was over 4 weeks since my first chemo and I had kept my hair considerably longer than expected, even once it started to fall out. I was reasonably sure that the short cut had helped with this – removing the weight that would otherwise have sped up the loss. I  wondered if the nightly Vaseline had contributed to the survival of my still present eyebrows.

That evening the fridge decided to retire its services. This was not ideal, on many counts. Primarily because in 36 hours time we were all off to Dublin for a few days to see in the New Year. So a new one was ordered, very much on the basis of who could do next day delivery. Fortunately we had eaten most of the Christmas leftovers, having had two full repeat Christmas meals at both lunch and dinner, with another due the next day.

With the inevitable weight gain (I'd now eaten a lot of Christmas dinners and mince pies) and the jabs over with until cycle 3, finally I started to feel better.

We popped into the pub briefly, as we would be away for New Year. It was the first time I had been there for over a week and the first time I had been out of the house for 4 days. Everyone seemed incredibly pleased to see me. The boys had been in without me a few times in recent days, saying I was tired. But I wondered if people had read more into this explanation, and realised that I had been a bit more unwell on this cycle. I wore my headscarf, for which the regulars mocked me. So it seemed only right to join in and call myself Turban Tom.

As well as pillow chaffing, there was another peculiarity with having no hair. I kept getting wafts of hot air up the back of my neck as it escaped from inside my clothes. It took me a while to work out where this sudden heat was coming from, and it continues to be a strange sensation.

VIII

 The Dublin trip had been planned before all this began or was known about. So it was nice to be well enough to still go. Annoyingly though, the promised temporary menopause wasn’t happening, and I got a period. I won’t relate the Dublin trip here as our trips and travels are covered in another blog site. The only points that I will make are as follows:-

On the flight over, the magazine had an article about Nigella Lawson, from which I discovered she had a sister called Thomasina, who had contracted – and subsequently died from – breast cancer. It was spookily similar. Apart from the death part.

In accordance with our plan to travel fairly light it was nice, as a woman, to lead the way by not packing bottles of shampoo or conditioner. This proved to be a mistake. It was the first significant wig wearing I had done, and while it didn’t get greasy or dirty like normal hair, it did pick up food smells from restaurants, as well as a faint whiff of head sweat. Yum. By the end of the trip it was becoming unpleasant, and nice to wash it when we got back – a process which brought a whole new meaning to washing your hair.

Another new experience was just how staggeringly uncomfortable it was to wear all day long. The top of my ears were slowly crushed by the elastic, and it was annoying not being able to tuck myhair behind my ears to keep it out of my face when we were eating. On a more convenient note though, if the fringe was annoying my eyes, I could just shift the wig and move the whole hair line back a bit.

 

But the most significant issue was when I wandered off from the boys. ‘We can’t see you in the crowd’ they complained ‘because we don’t know who we’re looking for’. So we agreed that if I got lost I would take my hair off. That should help narrow down the ‘look’ they were searching for.

As we crossed into 2014 I did a quick annual stock take. Cats at the start of 2013 numbered 2. Cats now: 1. Breasts at the start of 2013 totalled 2. Breasts now: 1. So my objective for 2014 was to end the year with the same number of cats and breasts that I started with. That would make a marked improvement on 2013.

As we came back to England a horrifying realisation presented itself to me. My passport was due to expire this year, and I hadn’t had the foresight to get pictures done when I still had hair. So my option is to do a photo with a wig or with whatever amount of hair I manage grow in the couple of months after the chemo finishes. In any event, for the next 10 years this document will be a perpetual reminder of this brief moment of my life.

Wanting to tidy me up Steve shaved off a bit of the Tintin like tuft that had prevailed at the front of my head. He also wanted to do a close shave round the back of my head, which now he called an 11 (pm) o’clock shadow. ‘You look like a middle aged man from behind’ he said. ‘Don’t approach me from behind’, I advised. ‘Well that cuts down my options’ he bemoaned.

I think the cat was aware of my bald, and potentially cold pate as she started to sleep on my pillow, curled around my head. Overall though, I was having fun with the baldness. It was a bit like being the star of the emperor’s new clothes. There would be a double take, a look in their eyes that showed they knew something was wrong, but didn’t want to mention it, so would carry on completely normally as though nothing was amiss. It was a moment of fun at a time when fun didn’t feature in any of the literature that had been given to me.

I had intended to go into work for a few days after New Year, before cycle 3. But my well laid plans were thrown asunder due to storms causing havoc on the train lines. When I finally managed to get in, it was a windy day. Now, gusty winds cause anxiety and havoc to hat wearers and men sporting a well placed comb over, My father had once told me of a time when he walked through the streets of London and saw a man age 20 years before his eyes when the wind swept his comb over away. I wasn’t overly convinced that the wig was securely lodged and wondered what the effect on passers-by would be if my baldness was suddenly exposed should the wind whisk it away in an instant.

When in the office, I put my wig in my in tray. One of the girls I worked with picked it up exclaiming that it was exactly the colour she wanted her hair, and she liked the style too. Therefore, could she borrow it to show her hairdresser.

 

IX

 

For the third cycle of chemo I was shown into a room on my own as this was the only place where there was a free chair. It had the cold cap machine in it. I touched it. The cap was made from opaque, yellowy rubber. It felt slimy and gelatinous – and cold. I let go of it promptly, with an exclamation of ‘Eeeeuuhhhh’. Whereupon it immediately slid off the hook it had been hung on. Steve picked it up and put it back on the hook. It wouldn’t stay, sliding back off and falling onto the floor. He picked it up again, but the pink insulating cover now came off  from the jelly cap. He picked up it yet again, re-assembled it and we rested it on top of the machine. By this point we were giggling profusely, having tried desperately to rectify the situation before one of the nurses came in and realised the carnage we were causing. I was pleased that I had opted against having the cold cap. It looked thoroughly unpleasant.

 

This time round I felt sick as the chemo drugs were being injected which did not bode well for the days ahead.

 

A couple of days later, for the first time, I had a metallic taste in my mouth. It was like having ongoing, unshifting bad breath, which I found more problematic than the change in food taste.

 

Having discussed my hair with Ana, the Portuguese nurse, Steve shaved my head with his razor.   She agreed that having it shaved all the way round would look better. He moaned that it would knacker his razor – but he had chosen to use it, so I had no sympathy. After the grade zero cut on boxing day, this really would the full monty. He washed what remain of my hair (which now amounted to little more than long stubble round the back of my head), then covered it with shaving foam before giving me a close shave. He finished by applying conditioner to my head, which seemed slightly pointless and was more for his amusement of running his hands over a smooth slimy head. Although after the grade zero sheering, my scalp had been quite dry. It was a tender moment, both of us standing in the shower, with Steve gently shaving my scalp. Obviously it was a shame that such a state of health, had been necessary to initiate such a tender moment. But I still cherish that wonderful, strange feeling of closeness and affection. When he promised sticking by me in sickness and in health this situation had never been in our minds. Even on our wedding anniversary, last April in Rome, we couldn’t possibly have known what challenge to us and our relationship lay ahead. We had met that challenge. Head on. And had come out defiant and victorious.

 

With regard to the head shaving, however, his real objective seemed to be the opportunity to moisturise my head. He picked up his aftershave lotion. Now, I like the smell of his aftershave - on him. I didn’t totally object to having my head moisturised but asked whether we could use one of my girlie creams instead.

 

As the torrential rain turned to cooler mornings, my newly shaved head was cold at night and I started sleeping with a snood on, until I got used to it. The cat had stopped sleeping on my head, and had gone back to her chair.

 

On day 3 of this third chemo cycle, I struggled. Even sitting was tiring. I spent most of the day in bed. I wasn’t tired, and didn’t want to sleep in case I was then unable to sleep that night. But being upright was too much effort. All I could do was lie down – and, consequently, I slept, getting up every couple of hours to check my work emails.  I tried to potter about the house, but was bored and alone. When Steve got home he suggested going to the pub. I suggested, in return, that this may be a bit much given how I’d been all day. But he still said I should go, even if just for half an hour. I was glad I did. It revived me enormously. I was even tip top enough to go to Twickenham the next day for a full day out at Quins rugby, which we had rather thought I wouldn’t be attending. So much so that my season ticket had been offered to Jon, and when I felt well enough on the morning, we needed to buy another ticket so that Jon could still come along.

 

X

 

Fully shaved, I was now really rocking the bald look and tended not to wear wig, scarf or hat at the pub. All the locals knew what was going on, and the non-locals could just deal with it. Besides, I didn’t look that daft. Peculiar, but not daft. My head was remarkably attractively shaped – which was a relief.  Although one evening at the pub Steve whispered to me ‘That man at the bar cannot stop staring at you’. I really didn’t mind being bald. I had known since the initial diagnosis that I would lose my hair, so there had been plenty of time to mentally prepare for this. I had embraced the situation with my head shave night and therefore, it didn’t give me a problem. It is strange to look in the mirror and see someone you don’t quite recognise looking back. But when else am I going to be bald – this was a brief moment to enjoy and savour. It surprised me that no women in the chemo ward went uncovered. I always walked round bald and proud. There, of all places, who will point, stare, laugh or question. There, of all places, it should be acceptable to be who you are now. It seemed a tragedy that no one else felt that they could.

 

I had started to take great interest in the changing shape and feel of my body. No longer able to sustain a 5 times a week gym habit, some parts were getting squishy. Bizarrely, while my hips seemed fleshy (despite remaining at 33 inches measurement around my hip bones), my stomach muscles were becoming very visible. It almost seemed as though my body fat was sinking, as though I was melting. Or perhaps the change in how I felt was due to the amount of stout I was drinking. Which leads one to a question – does stout make you, well, stout? My weekly home weigh-ins still recorded a body muscle percentage around 30 and body fat ekeing up into the region of 28%, more often than not. But I needed to start being more accepting to the body changes. After all, the chemo due for the final 3 cycles had a possible side effect of water retention and weight gain. Which wasn’t overly appealing.

 

Occasionally I would get hot at night. But it was too cold to throw the covers off completely. Whenever I did, I would then wake up with a shoulder or one of my limbs aching from being half frozen. So I found myself trying to create well placed air vents down the side of the duvet.

 

Now that I’ve been through 3 cycles I feel reasonably well equipped to talk with some degree of experience about what it feels like. So here goes. Days 1 to 4 involve an underlying feeling of nausea, treated with a drug regime which requires military attention to detail, as some pills are before meals, some with meals, some between meals and some before bed. On days 4 to 5 the nausea eases, but the lining of ones mouth starts to fall apart which ensures you’re still aware that you have a nasty condition. The disintegrating mouth lasts for a further 5 days. Also, heartburn kicks in. That is particularly fun. For a few days there is the permanent burning sensation. But as a ‘surprise’ the sensitivity prevails for many days, even once the burning has gone. So if you’re foolish enough to eat something spicy or citrusy, it feels as though you’ve consumed acid.

 

However, without the nausea, generally there is a feeling of improvement. Then on day 5 the injections start. Not everyone will be given injections to boost their bone marrow into producing white blood cells, but for other medical reasons the doctors were concerned about my infection risks. The injections initially make the heart burn worse and upset your innards. They also result in 2 days of flu-like symptoms, so you feel as though you have been comprehensively beaten by a truncheon. This is also the time when your body is trying to rebuild its immune system, so the weight loss and epic hunger start. By day 10 you start to feel normal again. Day 11 is the first day without any drugs at all. Then there are 10 days of feeling great. Except for the onset of thrush - it isn’t just your mouth that disintegrates. The tiredness followed no pattern. Day 3 was always tough, but beyond that, there was no way of knowing in advance which days might be exhausting. However, other than the day 3 situation, any tiredness I had certainly wasn’t debilitating fatigue along the lines of what had been suggested in the vast array of leaflets that I had. And once you’re over all that, then it all starts again.

 

What was slightly concerning was that the 3 cycles of FEC were now over. I was now going to start on a new chemo drug and would have to learn all over again how it affected me, and when.

 

On the plus side, in the demystifying chemo session, they had talked about a lot of side effects which I have so far been spared.

 

XI

 

Whenever we go down to the pub, people ask how we are. Generally they are surprised and impressed with how we are dealing with the situation. But to me it seemed the only way to deal with it. In other words, just carry on. Be around normal, healthy people – so that you feel like one of them, rather than comparing notes with other cancer sufferers. And having a perpetual positive attitude. But again, what is the point in having any other attitude. How will that benefit you at all? It wasn’t just my mind. My body also wouldn’t give in – my periods were still occurring and I continued to have more hair than any of the leaflets suggested I should. At no point had I ever thought of myself as a cancer sufferer. And never a victim.

 

Steve was also amazing and, quite rightly, was asked how he was coping, as an acknowledgement that this isn’t all about me. It very much involves and affects him. His strength helped me as much as my approach to the cancer helped him. If either of us was finding the situation a struggle, it would have been a different story. But both of us took the view that this was a brief moment in time, it would pass, and we would carry on with our lives. If anything, this made us stronger. Invincible. Alternatively it could be that our ever present sense of the ridiculous kept us sane.

 

Although, as Steve said, he liked to keep me going, partly to avoid having to learn how to iron again. He had also googled hot bald women films. To be honest, I think he was looking for porn, but did also happen across completely normal films.

 

Now getting through the recovery period from cycle 3, I was approaching the half way point.