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.