Part 3 - Treatment, the proposal

PART III

 

 

I

 

We saw a different doctor for the post-op meeting. He explained that he was going to re-cap the story so far, with the admission that some of it he knew and some of it he would make up for me to confirm or deny. I had thought this re-cap would cover from diagnosis until now. Instead it started from shortly after my birth – going over every illness and infection I had had to date. Broadly speaking, he got it right. And so he should have – he had my notes in front of him, by now a fairly bulky file of papers.

He needed to clarify a few other details, such as my plans regarding having children. I told him in no uncertain terms that I did not intend to have any, and that Steve had been cut off at the mains to further prevent this. ‘Noooo children’ he said, as he wrote this on my notes – in exactly that format. This note was soon followed by No Reconstruction and No Cold Cap. It all looked a bit negative.

He then asked why I had had a mastectomy rather than a lumpectomy. ‘That was what the surgeon advised’, I told him, ‘given the size of the lump in relation to my breast’. I  also hadn’t been given a choice, but it already felt like I was in trouble, so I didn’t want to mention that and potentially compound the situation.

 Then we got the technical detail. The tumour was 19mm in diameter. In medical terms this means it was a T1 tumour. It was surrounded by pre-cancerous cells making the total lump a diameter of 38mm. Because of the medical preferences about how much clearance there is around a tumour removal, if I had had breast conserving surgery (lumpectomy) he would now be sending me off for a mastectomy. And that would have been annoying. It’s not often one will have cause to say ‘well hurrah for having had a mastectomy’ with a tone of smug vindication – but this was one such rare moment.

What all this meant was that my local recurrence risk was low. Very low. So low, in fact, that there was nothing to be gained by having radiotherapy.

My recommended treatment was also dictated by the type of tumour. It wasn’t a hormone feeder, so tamoxifen (a tablet based treatment) was not going to be offered. More importantly, I could continue to use hormone containing face creams (collagen enhancing). It was heartening to know that my wrinkles would still be kept in check.

 So far, all the news had been quite positive. This was about to change. It was a stage 3 cancer. To give it its correct medical definition, this was a test of how ‘higgeldy piggeldy’ the cells were. Grade 3 was bad and increased the risk of recurrence somewhere else. It was also HER2 positive (I hope you’re keeping up here). This is a naturally occurring protein, but if positive rather than negative, it causes cancers to grow and spread faster. This again increased the risk of recurrence somewhere else.  The HER2 positive situation happens in 1 in 5 cancers. The ‘good’ news was that there is a dedicated treatment for this – herceptin. The ‘bad’ news was that this is given intravenously, every 3 weeks (like the chemo) – but for 18 cycles. Yup. That is 54 weeks of treatment.

Given my mix of lower and higher risk, and the increased risk of spread, he said that 6 cycles of chemotherapy would be offered. I was happy to accept the offer. Steve and I had discussed this at length beforehand and we had concluded that a few months of unpleasantness was a small price to pay for the knowledge that I had done everything I could to beat it. Otherwise, in the event that I did get another lump, I would always wonder – would this have happened anyway, or could I have stopped it. I would get two different types of chemo – all administered intravenously. The first 3 cycles would be FEC and the second 3 cycles would be taxotere. After some thinking aloud he decided that the last 3 cycles of chemo and first 3 cycles of herceptin could overlap – thereby reducing my treatment time by 9 weeks. The herceptin couldn’t start sooner as herceptin and FEC do not mix well.

The chemo would reduce my recurrence risk by around 30%. The herceptin would reduce it by a further 40% after the effect of the chemo was taken into account.

 He did say it was entirely possible that with no further treatment at all I would be completely fine and never grow cancer again. But they didn’t have a test for that.

And now for the joy of side effects. Herceptin, by and large had no side effects. Well, you could feel a bit rubbish after the first cycle – but I would be on chemo then anyway so already feeling moderately below average. Once the chemo was done with and I was only on herceptin there was no reason why I couldn’t re-join the human race and behave like a normal, healthy person.

Chemo, however, was a different animal. While making it clear that the management of side effects was now much improved, he said that symptoms could include nausea, being sick, constipation, diarrhoea (‘diarrhoea is common in the first week of each cycle’, he said ‘if you have it in the second week, you’ve probably got food poisoning’), hair loss, hot flushes, mouth blisters. None of which was on my Christmas list. This seemed very like the surgery situation – I was willing to walk into hospital in cold blood and this time round be intravenously administered with poison, which would make me feel rubbish. And then, three weeks later, I would return and get it done again. And again. And again. And again. And again.

I was also informed that chemo could cause menopausal symptoms. Things would most likely return to normal afterwards, only for me to go through it all again a few years later when I had the ‘real’ menopause. Nice practise run then.

He warned me about infection complications. This was where the greatest mortality risk lay – an infection that could not be brought under control. It was impressed upon us that if I was unwell, call them. If my temperature rose to 38 degrees, I would be in hospital and pumped full of antibiotics on a ‘administer drugs, ask questions later’ basis. Steve wondered if there was a way of attaching a thermometer to his willy in order to undertake rectal temperature checks on a regular basis. Naturally I was touched that he had my welfare so much to the fore.

Then we had a discussion about putting tubes into me for the treatment to be administered. As I had many many weeks of treatment and, by all accounts, chemo destroys veins, they couldn’t just hook up into my veins via a canular because by the end of the treatment my veins would be ruined and I would have an entirely new problem. Another consideration was that only my right arm could be used due to the lymph node removal from my left armpit (7 lymph nodes taken – not 3, which I had initially been told). So a more permanent line needed to be fitted into me.

Option 1 – Peripherally Inserted Central Catheter or PICC line. Less invasive to put in, runs internally up your arm and across to your chest. Needs to be flushed weekly at hospital.

Option 2 – Portacath. More invasive surgical procedure to implant a small box into my chest (titanium -  I hasten to add). Does not need flushing.

Hmm, weekly visits for over a year vs increased mugging risk by having precious metal in my person. It was a no brainer. Option 2 please.

Now came the moment we had all be waiting for. The removal of the dressing. I had been wearing the dressing for two weeks. Consequently it was now a bit tatty around the edges and coming away in places – so I had already had a sneaky peak at what lay beneath. A thin line of surgical sticky tape. Now that too came off. There were no external stitches, and an amazingly neat scar stretching from my former cleavage (or where it would have been if I’d ever had one) up into my armpit. I was immensely sticky from the dressing, and quite swollen still, such that it looked as though I still had a small breast. But when I pressed on the swollen bits, the fluid leapt across my chest, with a look and feel similar to when you play with a hot water bottle – moving the water from one of it to the other. I was so excited to finally see it that I called to Steve to pop his head around the curtain and look.

Fully briefed, and expecting a raft of appointments, we left, armed with a mountain of literature.

 With the dressing off it was an opportunity to take photos and issue them to the family. Bro the elder responded saying ‘I suppose I imagined the wound would be much worse, thinking rather stupidly that they would sever the breast, leaving a large round scar, but obviously it was more efficient than that’. I assume he used the term ‘large’ in its loosest sense. It was also the chance to have my first shower in two and half weeks, an indescribably blissful feeling.

The next day at work I wore my softie. It fitted a little better now that the dressing was gone, but was still a fraction big. I showed the rather small stuffed pocket so some of the people at work, and then gasped ‘oh no, I’ve just shown you my tit’.

 

II

 Now that the chemo was confirmed we could plan the fund raising heard shave, in earnest. The landlord of our trusty local – who shaves his head to a highly polished finish – had initially agreed to grow his hair for one month for each one who got shorn. Realising that this would quickly add up, he reduced it to two weeks. Then 1 week - with an early buy out option. The couple who run the pub are marvellous fun. The landlord has been shaven headed for 17 years. His wife liked him like that. So while she appreciated his magnanimous hair growing gesture, she was also concerned. So for a bit of fun we persuaded her to make him believe that she would get her head shaved. And to maintain this pretence until the day itself. He was mortified at the prospect. So the net effect was hilarious.

I registered the event with Breast Cancer Care (who  published the immense number of useful and informative leaflets I had, as well as offering an online forum and blog, burgeoning with helpful advice from other women in this situation), set up a 'Just Giving' page, added this epic to a blog and started the process of raising funds. It took off immediately. The generosity and kindness of friends and strangers was, and continues to be, very humbling.

When I first loaded the blog Steve had been concerned about the cover picture. 'It's quite high resolution' he said, 'there may be pervs looking at it who will zoom in'.  A few days later a friend of ours told me that she had wondered if the picture was of me, so had zoomed in. Just to check!  (It is me, in case you were wondering - what's more, it was taken a month before my diagnosis. The cancer is there, in that breast.), Looks like we'd found our perv.

 All that was remaining was confirmation of when my chemo would start, so that the date could be finalised. 

 

III

 

 A female friend was in the pub and had been French plaiting the long, wild hair of one of the male regulars. The plait was good. The overall look – on him – didn’t entirely work. The sight of my hair now presented greater appeal. She brushed it and ran her fingers through it. ‘You have amazing hair’ she said. ‘Fuck off’ I jokingly replied. After all, I wouldn’t have it much longer. She kept saying it, again and again. And she was right. It was amazing. Long, thick and wavy. She started plaiting. After a few minutes Jon whispered to me that she was crying. I reached round to hug her, and hugged her more closely when she had finished. She was enormously upset. ‘What’s the matter with you?’ her husband queried ‘she’s the strongest woman in this pub’ he said, nodding in my direction.

It was a strange situation to be in, but I suppose it was more difficult for the bystanders. After all, I couldn’t escape or hide. I couldn’t make it go away or pretend it wasn’t happening. All I could do was front up and face it head on with as much positivity as possible and enjoy the process on the basis that I didn’t plan to repeat it.

The tendon in my armpit was still very tight and pulled in a way which was visible, and interesting. Reaching for things was uncomfortable. Bro the younger had said that it didn’t really matter if I couldn’t put my hand up again given that I was no longer at school, and things could be moved from off the top shelf. But it was still frustrating, so I was hugely excited when – 3 weeks after surgery – I could take my T shirt off by myself. This felt like progress. It’s strange – the little things we take for granted.

 

I was still doing my daily re-hab exercises. I was almost at exercise three of the total of four. According to the exercise sheet, once I could do all four (the final exercise was a backstroke motion) then there was no activity that I couldn’t do, irrespective, apparently, of whether or not I could have done it before the surgery. I still had no feeling in my armpit or along much of the scar. This seemed to be normal, and there was no guarantee that sensation would return.

At rugby that week one of our friends asked how I was doing, and the arrangements with work. ‘Are you milking it’ he said. ‘I don’t think I can milk it any more’ I replied, gesturing towards my absent breast. He giggled.

I had started reading guidance from the BCC forum about dealing with the effects of chemo. There was a lot of useful stuff – use a soft toothbrush, change it every chemo cycle, avoid crispy or hard foods which might damage your mouth, don’t eat food you like as you will forever associate it with feeling nauseous. But there was also scary stuff about mouth blisters, the lining of your mouth peeling off, filling your throat with skin, oral thrush, nothing tasting right, being unable to have a crap for a week after each cycle. That night I had an unpleasant dream about having chemo. As is standard in dreams it’s all a bit odd. The drug was a thick, sludgy liquid that we all drank with a straw. As the cups were slowly emptied, some patients left the room to throw up, others sank to the ground with exhaustion. In the dream, I too was hit with fatigue. I woke up feeling sick, and the feeling lasted for some time.

I wondered if I would still recognise myself as the treatment progressed. Not just physically, but deeper than that, to what extent could I maintain my sense of self, my identity. And not just be a cancer sufferer, too tired and sore mouthed to feel like a person.

IV

The expected appointments started to come through. First I was contacted by the wig people, and then the surgical unit regarding fitting my portacath. The confirmation letter they sent included instructions for being under general anaesthetic. I had known this was a more involved procedure, but another general was a bit of a blow. And then there was the final appointment – from the oncology department. For 9.40am on 25 November. Gulp. Deep breath.

So, head shave party night was looking like Sunday 24^th.
 

There was a sobering moment when a friend of ours mentioned that she had been invited to a mobile mammogram screening, and now had the results. She had not been screened before, but was well aware of the highs and lows of my situation. I hope she would have gone anyway, but with an enhanced awareness of how it can all go wrong, she accepted the invitation. The screening unit basically amounted to a lorry trailer in Asda car park. The lady doing the screening positioned my friend and said to her ‘you have very firm breasts’. ‘Thank you’, she replied. There probably wasn’t much else you could say, and given that this information was provided by someone whose job it was to handle women’s breasts all day, every day, you kind of had to take her word for it. The results were posted out. I suppose, in the event of bad news, a trailer in Asda car park was not the appropriate venue. Her results were all clear, for which I was mightily relieved. But I wondered how many other women had started along this road since me. 

V

 For the third day in a row I woke early and lay in bed restlessly, for what felt like hours, before it was time to get up. Today was the last day in the office for 4-5 months – and it was a frosty morning. But it was nice to know that the threatened snowy winter would have no impact on me at all. My horoscope in Metro said ‘There may be a lot going on for you now’. No shit Sherlock! 

I had told a girl at work about the proposed charity head shave night, and that the landlord was getting in some pink tequila to add to the fun. ‘That’s a mistake’, she said, people will wake up the next day with a sore head and no hair and you may get some texts asking what happened’.  When I mentioned this to Steve he decided that we should get everyone to sign a humorous disclaimer, confirming they were of sound mind and sobriety when making their decision.

Once upon a time, before all this started, I slept on my tummy. It was still too uncomfortable to return to this position. It was also awkward lying on my wound side – which took several attempts to get comfortable and, bizarrely, hurting more in the seconds after I moved my weight off the scar. But I could lie on that side long enough to cuddle Steve – which we had missed when I was particularly immobile. Now I tended to sleep on my right side. Initially my left arm needed to be draped along my side, but in such a way that it did not rest on the scar, as it pulled too painfully if I put it on the bed in front of me. I had only recently been able to sleep comfortably.  

So, to know I was going to be having surgery now on the right hand side of my chest, to insert the portacath, immediately posed risk of more uncomfortable nights. And with a box in my chest for the next year or so, I would probably never sleep on my tummy again.

After a morning working from home we set off for the hospital. Mr Sutton was going to fit the device and told me that it could be done under local anaesthetic if I was alright with that. I most certainly was – but slightly annoyed that I had been fasting unnecessarily for a few hours. Also, it could be inserted on either the left or right side. His recommendation was the left.

 All gowned up and with a red label on my left arm instructing ‘nil by arm’, another lady and I were walked upstairs.  When I had the mastectomy, I was admitted into the theatre section of the hospital, but taken down to Day Surgery for the operation. This was now the reverse.

We were asked to sit down and wait for a moment. Being women, we immediately started nattering. She had also had a left breast mastectomy, but all her lymph nodes had been taken. Also, she was having radiotherapy after her chemo and then, rather depressingly, had to have more surgery to take additional tissue out. Her surgery had been one week after mine so we compared notes about stiffness and mobility. She asked whether my skin hurt. With everything else that went on I had almost forgotten that the skin on the top half of my left arm had been extremely sensitive to the touch, almost painful. It had now eased and was only very slightly sore. This seemed to be of comfort to her – to know that in another week, hopefully, her arm would also be less painful. I didn’t get the chance to ask if she had her chemo dates before I was summoned away.

The Theatre area was like a scene from the baddies lair in a 1980’s James Bond movie. There was a long corridor, peppered with people, dressed identically in purple theatre pyjamas, silently attending to their work around complex looking machinery.  We went into a room which contained purple clad Mr Sutton as well as another 2 purples, lingering awkwardly in the corner. These were students, come to observe, if that was ok with me. Mr Sutton warned me that he would be talking to the students throughout to quiz them and explain what was going on. ‘That’s fine’, I said, ‘provided you don’t ever use the words oops, or, that wasn’t supposed to happen’. ‘Oh, we never say oops’, he replied.  

I got onto the bed and, following a less than comfortable local anaesthetic injection, I was doused with iodine and then had surgical sheeting taped over me so that only the area of interest was exposed. This did mean that my face was underneath the said surgical sheeting – and initially the pungent aroma of the iodine was stuck under it with me. After a minute or two a nurse came round and lifted the edge so that I had a face to talk to.

‘This bit will feel a bit peculiar’, he said. ‘How do you know’ I asked him. Which seemed sensible enough to me. Apparently this was what patients had reported. It didn’t feel odd, just a pushing sensation. A lot of pushing. Quite hard, determined pushing. Mr Sutton explained that he was burrowing to make a space for the port to sit in. Then he needed to do something rather technical which basically amounted to passing a line through and into a blood vein. Once this was safely in place, he attached the port, put it into the space he had made for it. As he pushed the line through he warned that this sometimes caused pain, and I must let him know if I felt any. ‘Can you feel any pain’, he asked, as he proceeded. ‘Not yet, ‘I replied. ‘Don’t say it like that’, he smirked ‘there are students here. I’m meant to look whiter than white and you’re not in any pain because I’m very proficient at this’.

I giggled. And then winced. Because something hurt. ‘I touched an artery’, he informed me, having seen the wince. ‘They have nerve endings. I won’t give you any more local as that will sting, I’ll just avoid touching the artery again’. That seemed like a good plan.

Having got the line in place, it needed a quick x-ray to check it was in the correct location. Through my peep hole I could see the X-ray screen. The nurse even rotated the image so that it was the right way up, and one of the students went over to point out the various bits. He showed me thet space made for the port – currently filled with swabbing – and the line running under my collar bone, down to my heart.

 

Shortly afterwards, the port was fitted, sewn in tested and it was all done. He then asked me to move my right hand onto my chest and ‘feel my new friend’. It was a funny little lump. 

I went back down to the, not pleasantly named, ‘Discharge Lounge’ for a cup of tea and biscuits. The port was a visible lump, and looked a bit like an alien trying to escape from my chest.

 

Once again, sleeping was uncomfortable. Once again, I needed help undressing. Once again, I couldn’t raise my arm above my shoulder. I was extremely pleased that the procedure had been done on my left so that I still had one fully functioning arm. I consoled myself with the thought that the bruising would soon go, and I would regain the mobility I had spent the last 4 weeks trying to get back. But it did feel like a slight backward step. 

VI

The following day we went for my prosthetic fitting. As we sat waiting, Steve asked if I wanted him to come in with me. ‘Of course’, I said, ‘why wouldn’t I?’ ‘Well’, he replied, ‘you are choosing a part of your body’. I reminded him that he was entitled to a say in that.

The permanent prosthetic was made of silicone. I hoped it would therefore ‘cling’ to me a little better than the softie and not try to escape with such regular determination. I had heard of adhesive versions, which used denture glue, or something similar, to keep them in place, but this seemed a bit extreme. Being made of silicone, there was a risk of leakage if punctured or split. The nurse told me that if this happened, I should just put a plaster on it. So it would then look just like my old breast, after removal, and complete with plaster. The image made me smile. I decided that in some bras I would probably sew in a fixed filling, particularly those ones that tended to ‘lift and squeeze’. This works fine on a breast that is attached – but forces a prosthetic up, out and away, which was less than ideal. Camisole tops would certainly need something sewn in as their structure was not sturdy enough to house a prosthetic. I pondered an expansion of the existing mastectomy underwear business enterprise to cover evening dresses. Party season was looming and we had some black tie do’s lined up. Most dresses (and certainly most of my existing ones) were designed assuming the presence of breasts. Even with the prosthetic in place, if anyone stood near me it was quite obvious that something wasn’t quite right.

The prospect of a future filled with demure, sensible, Victorian style high necked frocks reared its unwelcome head. On the plus side, rather than just co-ordinate said dress with shoes and bag, I could now try to accessorise with a colourful wig as well.

 I tried on a variety of sizes. And shapes! The prosthetic had a nipple and was wonderfully wrinkly when it wasn’t being worn. After trying on about 5, we settled on one which was oval shaped rather than pointy at the top. 

That afternoon we had a lengthy ‘demystifying chemotherapy’ session, courtesy of Macmillan. This included a tour round the oncology ward and the chance to see the room that would become all too familiar over coming months. We were also shown the cold cap. Everyone laughed. It was very pink, with a chin strap, and a large tube running from the top of the head to a big piece of machinery that would blow cold air out. It could only be used if you had hair because if your hair had thinned or fallen out in clumps there was a risk of frostbite on the exposed parts of your scalp. The conclusion of most of the ladies present was that it would be uncomfortable, and you would look very very silly whilst being made so uncomfortable. 

We were also told about free therapies that we were entitled to, including massage and yoga, as well as being strongly advised to get our name on the list for the Look Good Feel Better make up session – where you got a goody bag of make up, worth around £250. One girl was concerned about getting the session before her hair had fallen out – in particular her eyebrows. The session would teach you how to proficiently draw them on. As individual hairs. ‘well’, I told her ‘you could always shave an eyebrow off if it came to it’. She had also had breast cancer, but had had a lumpectomy as well as lymph node removal. She also commented about the sensitivity of the skin down her arm.

The session had a lot of useful, and alarming information about dealing with stress and anxiety. They also explained the action of chemo on fast acting cells – mouth lining cells are replenished every 2-3 days and hence are attacked. Gut lining is replaced every 4-5 days, and are also, therefore, under attack. White blood cells live for 7-10 days, and the ones that are particularly affected by the chemo are those which mop up unpleasant bacteria. Brain cells are never replaced. Which was unfortunate. However, so that they didn't feel left out, there was the fun of chemo induced brain fog to look forward to.

To ensure that when we did have any energy, it was used on the right activities, they advised making two lists. One was all the nice things we wanted to do when we felt up to it. The other list was the dull, mundane minutiae of life, the things which have to be done and which we perhaps shouldn't waste our limited energy on. This was on the basis that if you felt ok, spent an hour and half ironing, and were then knackered, this wasn't the best use of your energy. Therefore, when a kindly friend or relative asks if there's anything they can do to help you say 'yes, I've made a list' - surely words to plant dread into any well meaning soul - and give them the second list. This seemed like a good way of making sure that either you got no visitors, or they never uttered those fateful words!

The importance of recognising and acting on any suggestion of infection was hammered home. They listed 14 signs of infection that we should be alert to. They then pointed out that 11 of these were also common side effects of chemotherapy. Well this was going to be interesting!

We were warned that chemo comes out the same colour it goes in – if your chemo is red, your pee will be red. If it is blue – guess what, blue pee.

For mouth health, the advice was to wash our mouths with saline fluid 3-4 times a day. Steve was delighted - immediately thinking of his self made saline solution.

The nurses provided a lengthy sheet of food that we could or couldn’t eat and directions about how many times in 24 hours it was ‘safe’ to throw up or have diarrhoea. In the event of the opposite problem, laxido powders were recommended as the final  option, the ‘unblocker of everything’.

Up until now I had always understood the awesome power of the phrase 'yes, dear'. Now a new force was with me. The cancer card. If, at any time, there was something I needed which is normally not possible for mere mortals - be it an urgent GP appointment or side salad that hasn't come from the germ ridden salad bar - the card is to be played. And here's how it goes: I am a cancer patient. I'm on chemotherapy and I need to have ..... I promise that I will never, ever make inappropriate use of that (with much crossing of fingers).

Then they made sure we all had forms to claim free prescriptions. For 5 years. This wasn’t all bad.

From information received in this meeting as well as from BCC, Steve and I started to compile a shopping list. Pineapple chunks, crystallised ginger, prunes, cabbage, mini milk lollies. I wish someone would take that to Ready Steady Cook and see what they make of it.

The next appointment lined up was with the wig people. It’s very strange picking parts of your person off a shelf, as separate entities. And very difficult to decide, when you actually have a choice in the matter. The wigs by and large all had fringes, to help disguise the wig line. It was tempting to play safe and keep something similar to my current style and colouring. But I wanted the opportunity to do something different. There was one, short, messy style which made me look the spitting image of my younger brother. I didn’t dislike it, but I couldn’t go round looking like bro. That would just be confusing. And also it did look a bit like road kill - or a guinea pig - when it wasn't being worn. I opted for a fairly dark, shoulder length one. It had a longish fringe that went into my eyes a bit and would need trimming.  As with all such things, as soon as I picked it, I worried about whether I had made a mistake.  It would take some getting used to – as with any change of style.

The bro the younger head wig had been so amusing that Steve took a photo which we sent round to friends and family. My father said it suited me - which is a good thing given that he has another child who looks just like that. Said child, bro the younger, replied that if I put a broom handle in it, I could use it to clean the kitchen floor. Shortly afterwards, this was followed by another email, which read:

'when I wrote that thing about mops this morning I was referencing my own hair and how many members of the family often compare it to a mop.

and then I re-read it after I sent it and thought maybe it sounded like I was mocking your wig. and then I thought hang on I sound like I’m mocking someone with cancer, my sister no less. and then I felt bad all day. 

sorry, didn’t mean it quite like that. I’m not the sort of chap who mocks people with cancer.'

 

I assured him that I had taken it very much in the spirit in which it had been intended.

The pain of the portacath incision still surprised me, until I remembered hearing the surgeon say 'could you pass me the dissecting scissor'. Steve suggested he may have had to cut through bits of tissue to make space for the port.  I hadn't been wearing my new prosthetic for a couple of days because the weight of it pulled uncomfortably on the new scar. So when I next took it out of its box to wear for a day out in London I looked at it for a few moments with a puzzled expression, trying to work out which way up it went. These things are more complex than they look and I couldn't go round all day with my breast on upside down. Perhaps I should have paid more attention as a child, when we attached plastic bits to potatoes to make a  'person'.  

VII

 Head shave day was here and, rather excitingly, it received mention in the previous day's local press. The trip to London had been well timed as I was now armed with an array of headscarves.  The last time I had such a dramatic cut was as a toddler when bro the elder and I were left unattended for 5 minutes, during which time he used the bathroom scissors to cut my hair which I had taken a full two and half years to grow. By all accounts, I sat there quite happily letting him remove chunks of my soft, fair, curly locks – which my mother collected into a bag and still has to this day.  Anyway, my brother – being only 4 or thereabouts – was not a proficient hair dresser, so I was left with a rather curious look. Apparently this distressed the other children at nursery so much that I had to go wearing a hat until such time as my hair had recovered itself. I could only hope that today’s cut would be a little more even and less distressing to nursery children.

We set off early to the pub to ensure we had time to blow up the balloons, put up posters and banners, arrange the barber chairs and set up the disco. And – more importantly – put out bowls of pink smarties.

The pub started to fill. I put my hair into bunches because I wanted them cut off intact as a keepsake, a reminder of how my hair used to be in case it grew back differently. It did, however, make me look like a 12 year old. My mother said I looked ‘sweet’ and should keep it like that. Hmm – I could foresee a problem there.

The appointed hour arrived and my requested tune, to set the tone for the evening (Always look on the bright side of life) started to play. Right – let’s get this done. I sat down, and a circle of people formed in front of me, armed with cameras. The two hairdressers stood either side of me, each cutting off a bunch, which they then held aloft in the fashion of a 16^th century executioner parading a recently severed head. As the first one was removed I called out ‘wait, I’ve changed my mind’. Then the gentle hum of clippers tickled my head. I had thought this part would be difficult – the public, much photographed de-hairing. But it was remarkably good fun, even before I was handed a medicinal whisky on the house by the landlord. Next to me, the other hairdresser was working her way through the first of the boys’ hair – a quicker process than mine. My hairdresser whispered to me that she thought I was very brave.

After a few minutes it was all over. I stood up and looked in the mirror. Why had I never done this before. It looked fantastic. I ran my hand over it – it felt strange. And fun. My mother thought I looked great, but also tinier and more vulnerable.

We had asked all head shave volunteers to sign a Declaration of Sobriety, confirming that they were of sound mind and mentally capable enough to make this decision. But once it got going, chaps were swept along with the tide (or bullied into it). As were the cutting girls who talked them into shorter grades cut and played around with some amusing hairstyles in the process. The photos of the event have as many pictures of horrified WAGS as stunned, shorn men. Then the DJ (who had also been done) rallied the troops saying that if we could raise £100 the barman would have his head shaved. Approximately 2 minutes later he was in the chair, and looked mildly unimpressed about it. Things started to get mildly out of hand when one chap volunteered for a chest and back shave. The following morning the landlord had to wash the floor about 8 times. Apparently hair clippings and sticky beer are not an ideal mix.

The pink afro wig I had bought was made good use of, and the girls amused themselves with pink hairspray.

Then came the moment of fun. We called forward the landlord and his wife. They both sat down. He couldn’t look, and sat with his back towards her. ‘Look, Look, I’ve got a bald streak right down the middle’, she called to him. He grimaced. She tapped his arm. Finally he turned around and saw her head of hair, fully intact and he realised he’d been had.

After the landlord’s cut, I took the floor for a thank you speech and handed him a basket of items he would need for coming months – curlers, straighteners, brush, conditioner. An hour later there was a distinct skinhead feel to the pub. My mother later remarked in an email ‘as so very many chaps agreed to have their heads shaved, albeit several were reckless, spontaneous actions, if there are any CCTV cameras near the pub which have recorded folk entering with heads of lustrous hair and emerging completely bald, it could be concluded that some cult is operating within those portals’.

A friend did a closing speech, to acknowledge what the evening had been all about, and handed me a book in which people had been writing messages of support all evening. I cannot relate here what was written in it. Suffice to say it aroused emotions. And continues to do so. With much bucket shaking, we raised over £800 in cash which was an impressive and stunning effort.

I hadn’t felt that drunk at the party, so the following morning my fuzzy head (internally, rather than externally) was a surprise. And not a pleasant one.

I took the bandage off my portacath wound in advance of it being used for chemo. It was a vertical cut, above the horizontal mammogram scar. Before long I would start to look like a noughts and crosses board.

From now on it was time to stop having ‘last’ days. Last day with two breasts, last day at work, last day with hair. Instead, things needed to become the first time.

First day of the rest of my life

First day rocking a bold (or bald!) new look that actually really suits me

First day of eating a lot more cabbage

First day of the beginning of the end

First day of chemo.

VIII

 

I wasn’t given a numbing cream, so putting the needle into my port was painful. And then the cocktail of drugs began, all washed down with a saline drip.

 

First, an anti emetic. Side effect – constipation.
 

Second, a steroid . Side effect – temporary tingle in the nether regions that makes one levitate a bit. It wasn’t a tingle so much as feeling as though a stinging nettle had been run along my bits, between my bum cheeks, up my spine and over my head. Apparently some people like the sensation. I can’t for a moment imagine why.

Third, two syringes of red chemo.
Fourth, cyclophosphamide. Side effect – diarrhoea

Fifth, fluorouracil. Side effect – temporary head freeze.

And that was it.

I was sent home with 3 different anti sickness pills and white blood cell booster injections. I hoped that the constipation and diarrhoea drugs would counteract each other so that the net effect was nothing out of the ordinary.

Three hours later the nausea hit.