Friday, 28 November 2014

79. The final VIP session

The very last drops of chemo
The drip stand beeps, the nurse comes to replace the blue-bagged chemo infusion with a flushing fluid, and that is it.

The end. No more chemotherapy. I'm all done.

There is relief, but also, strangely and unexpectedly, a sense of loss. I have become a resident patient here, I know the drill, I know the nurses, I know my way round. There is a comfort in this sense of belonging.

I can suddenly understand why people say that the period of time after the end of cancer treatment is almost as hard, if not harder, than the treatment itself. I've spent the best part of this year getting my head round being a cancer patient, being unwell all the time, being at the forefront of everyone's mind and attention. Always having more appointments in the diary, the next round of chemo to get ready for, coming up for air just briefly.

I have gained a new identity, and it's been hard-won. Now, suddenly, I don't have to go back. I hug my nurse (I've got Saviour Nurse for this final round, hurray) with a tinge of sadness.

I had thought that I would never, ever want to set foot on the chemo ward again. Looking at the armchairs squashed into the available space, surrounded by drip stands and an air of calm despite the business, I always have to fight the urge to run away. But now I am glad I work in this hospital. I can be reasonably sure that I will have dealings with this ward again in the future, if not as a patient then at least professionally. If your work involves people with intellectual disabilities who have cancer, you are bound to touch base with the cancer wards occasionally. 

Perhaps it is similar to the sense of loss we felt, my sisters and I, when we said goodbye to the nursing home where my mother died. Such sadness associated with the place, but these emotions are as strong and profound and necessary as joy (and aren't there always moments of joy to be found amidst the sadness?).

Those kind of places put you in touch with the raw essence of life, and leaving them (even if you are leaving them so that you can pick up the pieces of your happy old life again) takes courage. Because you know, really, that you won't get your happy old life back. What you need to piece together is a happy new life, made up of the old, but somehow accommodating the dying mother, the cancer diagnosis, the gruelling treatment.

Contemplating this unexpected perspective, I am almost glad that I still have radiotherapy to look forward to.

It may sound odd, but I am not sure I am quite ready to ease out of my poorly-patient-position and start picking up pieces.

I suspect that the daily trips to the Royal Marsden Hospital will be so grim and exhausting, that I will be truly happy when that's over. So let's hope I will be ready then to do the picking-up.

But then it's not over either. My chemo doctor gave me an appointment for the end of January, after the end of the radiotherapy, to start on hormone treatment. As my cancer was prompted into existence by hormones, I will need five to ten years of tablets. I hadn't anticipated that this involves careful thinking, more scans to see if my bones are strong enough, etc etc.

So perhaps there is no need to mourn the passing of patient-hood. Once a cancer patient, always a cancer patient, it seems.

The final round of chemo wasn't without a final episode of high drama.

Not quite as bad as that last on-the-spot collapse, but it came close. Despite the preventative anti-allergy drugs they'd given me just before, and the standard high dose of steroids to help the body combat its own instinct to shut down when the ridiculously strong Docetaxel makes an entry, I had another strong reaction some ten minutes after the chemo drip was turned on.

Like last time, it came on within seconds. Steaming hot flushes, breathing difficulties. This time, I brought Knee Owl Friend along to be my personal assistant. She looked in alarm at my beetroot face, "Should I call the nurse?" Yes! She should!

Saviour Nurse was sitting with another patient and was about to start giving her the slow-syringe treatment, but in typical Saviour fashion, got up at once to stop my drip, calling out "I've got a reaction over here!" Within minutes, other nurses had arrived with more anti-allergy injections, Piriton and Hydrocortisone. My flushed face and compressed chest settled at once. I wasn't worried this time. Saviour Nurse is calm and competent (even managing to talk to the abandoned patient in the meantime), so what's there to fear?

The only worry was that if I had another reaction once my chemo drip was re-started, they couldn't give me any further rescue medicine. So that, I assume, would mean that I couldn't have the final round of chemo. But all went well after this. I snoozed through the next couple of hours, courtesy of Piriton's soporific effect.

And that was that.

I am home now and I am fine.

I wasn't dreading this final round quite as much, because the previous cycle had been quite manageable. Very tired, yes; sore bones and muscles, yes;  but these things are simply dealt with by engaging with beds and sofas. Last time, I had a couple of days' grace before the tiredness descended, so I'm expecting the same this time round. So far so good.

And at least I know that things will look up again. The extra week before yesterday's chemo was a wonderful thing. Because right up to the day the chemo would have been due, I was still too tired to get out much, and I was secretly worried that it would be too difficult for me to get to Glasgow. But then my stamina came back in leaps and bounds.

Let me tell you, it was absolutely fantastic to be at my conference.

It made me feel like a normal human being again. It was a joy to be with my colleagues from across the UK. It was good to drag my forgotten professionalism out of my boots, to chair the day with reasonable success, and to be inspired (as always) by so many enthusiastic delegates and speakers. Everyone was kind. Everyone was telling me how well I looked, which was nice to hear.

Chairing the conference

And at the end of the day, when I had to hand over the chairpersonship of the PCPLD Network to Jason (not because I am ill, but because my six year maximum mandate has come to an end), they gave me an extraordinary thank you speech and a gift that brought tears to my eyes.

Perhaps it won't be so bad, after all, to finish cancer treatment and go back to work properly.

I am presented with a wonderful print as a thank-you for my six years as chair
Apparently, my colleages had been asked to send in some words they associate with me...
how kind and generous!
(I note that the words Forgetful and Stubborn are mysteriously missing from this collection)

Tuesday, 25 November 2014

78. The science behind radiotherapy

Let me tell you about the science behind the radiotherapy decision, or rather, the lack of science.

This is a rather technical blogpost, so do feel free to sign off if you don't feel the need to understand all the medical ins and outs.

And before you start asking: yes, I've made it to Glasgow. Hurray. I managed the train journey, chaired a two hour meeting (I haven't attended, let alone chaired, a meeting since March) and had dinner with colleagues from across the UK. It is completely wonderful to be with these passionate and compassionate people who have become friends over the years, who share and understand the work I do, and who have been so supportive of me whilst I've been ill.

I've woken up early, so before I embark on the busy conference day, let me finish what I started writing on the train yesterday.

The doctors would be quite happy not to treat me with radiotherapy, so why go through it?

Women with my diagnosis and lab results are routinely given chemotherapy. Young ones, that is (and it seems that whilst I may be old in the eyes of my children or fellow bus passengers, cancer doctors invariably describe me as young). It's to do with the cancer having spread to the lymph nodes. If it has started journeying beyond the original lump, who knows where else it has journeyed to? Better be on the safe side, if your body is strong enough to cope with the poison.

Still, it's a guessing game. They base their guess on the size of the tumour (mine was small, although if you count the pre-cancerous cells that surrounded it, you're looking at something quite big) and the number of positive lymph nodes. In this context, positive means cancerous: not quite so positive, really.

I had three, and that's where the problem lies. Because in the absence of a machine that reliably lights up every single cancer cell in your body, doctors like to base their treatment decisions on likelihoods and probabilities that have been tested in research. Such research tends to divide women into three groups, depending on how many of their lymph nodes tested positive: none at all; between one and three; four or more. Then they look to see how many women in each group have a recurrence of their cancer within five, ten, twenty years. Does the treatment make a difference?

The case for chemotherapy is strong.

If your cancer hasn't spread, you don't need to attack your entire body. But if it has spread to your lymph nodes, it's best to get the poison out. The studies will have shown (I'm told) that whilst there are plenty of women with between one and three positive lymph nodes who will survive without chemotherapy, there are also enough women who don't. And because you simply don't know which way the dice will roll, it's worth treating everyone.

But radiotherapy? The research evidence simply isn't available yet.

Four or more positive lymph nodes? Yes, definitely. Blasting you with radiotherapy after the chemo can save lives. If your cancer has been merrily taking up residence in the nearby nodes, they are clearly fans of travel, and there may have been some cancer cells left behind on the chest wall (even after a mastectomy) or in the lymph nodes near your collar bone.

But one to three nodes? It hasn't been demonstrated that radiotherapy makes any difference. But the problem is that if you lump these women together in your study, and you find that there is a bit of a difference between survivors and non-survivors, whether you treat them or not, you don't know whether the few non-survivors tend to be the ones with the three lymph nodes rather than just the one.
There is a study going on right now that is looking at exactly this question. Do women with one positive lymph node survive longer with radiotherapy? How about two? Or three? But the results of this important study are not out until next year.

I hope you are keeping up. It isn't easy, this stuff, because you are hoping for answers and they simply aren't there.

The doctor who explained all this was rather pleased about my background, because it can be quite hard for patients to grasp that doctors make treatment decisions based on such evidence. If the evidence isn't there, it's down to the doctor's own best guess, which is based on their own opinion and experience. If the patient can be involved in the decision, so much the better.

My Chemo Consultant had already hinted at the dilemma. I was given a choice between two cancer hospitals. The radiotherapy consultant in one of them, she knew, is keen on treating women like me. She didn't know about the Radio Consultant in the other hospital, which I chose (it's easier to get to). 

I was seen, not by my own Radio Consulant, but by someone from her team.

"We don't tend to treat women like you routinely," she said. "But we are happy for you to have radiotherapy if you want it."

So it was down to costs and benefits. The benefits, as you've seen, are uncertain. I wouldn't have chosen it if the cost was great. If there was a significant risk of long term side effects, for example.

But it sounds as if the cost is short term, the side effects only temporary. Tiredness, skin burning, that kind of thing. It might damage a bit of my lung, but it's only a small part. It would have been more risky if it had been my left breast, as that would run the risk of some heart damage.

"Let me see if I got this right," my husband said. He was doing a good job, keeping up with all this medical talk. "You could see the radiotherapy as an insurance policy, which you buy even though you know the chances that you'll ever need it are very slim. I understand that we don't know if she needs the policy, and we may find out next year that this study shows there was actually no need. What is the price she will have paid? It sounds like it's not particularly high."

The doctor agreed. I agreed. I can do tiredness, if I know it will get better. Which it will. I am happy to take the one-in-a-few-thousand risk that in twenty years time, I develop a different kind of cancer caused by the radiation itself. ("It's such a small chance," the doctor explained, "that I don't even tell most of my patients about it. But it seems that you can weigh it all up properly.")

So there it is. I'll have radiotherapy to my chest wall and to the collar bone. The collar bone was another decision: often, radiotherapy is only given to the chest wall. I based my decision on the fact that the radiotherapy consultant in the other hospital tends to include the collar bone, because of the lymph nodes that are there.

I'll leave it there for now. I'd better get ready for my conference. Have a good day everyone.

Monday, 24 November 2014

77. The radiotherapy plan

It was an interesting day, but I am going to keep this brief, because the day was long and exhausting. It included a mad dash from one hospital to another; I made it just in time. I still have bags to pack and children to sort out before I get on the train to Scotland tomorrow morning. (No, my husband can't help; he has gone off on an overnight business trip too.)

Here is the plan:  three weeks of radiotherapy in January.

The treatment involves daily trips to the Royal Marsden Hospital. They don't do radiotherapy at St George's. It needs specialist machines in a specialist hospital. They blast you with radiotherapy beams for all of, oh, one or two minutes per session. You get weekends off, so it's Monday to Friday, fifteen blasts in total.

Because of Christmas and the New Year coming up, with too many bank holidays that would interrupt this itinerary, my radiotherapy can't be fitted in before the year is out. I'll have to wait until 2015.

I will tell you more another time. There is plenty to tell.

Not only about the excellent doctor, who gave me the choice whether or not to have radiotherapy (the jury is out, really, on whether it is absolutely necessary), discussing things very clearly without insulting my intelligence.

But also about all the other staff, from the receptionists to the nurses, who between them managed to change me from feeling myself, confident and in control, to feeling nameless, lost, like a small and ignorant schoolgirl. All in the space of half an hour. Just as well my husband was there to keep me sane by nodding that he felt the same. And thank goodness the excellent doctor redeemed the situation with that intelligent discussion.

The possible de-humanising effect of institutional procedures imposed by institutionalised staff on an unsuspecting new patient is a blogpost in itself. I hope I get round to it, because you do forget - and the staff, I suspect, have absolutely no idea what it feels like on the other side.

Sunday, 23 November 2014

76. A Parliament of Owls

 The postman delivered a parcel yesterday.

It was a hand-embroidered owl cushion.

I stared at it open-mouthed. Such a labour of love - and I've only met the sender twice. She is retired and lives in Cornwall. I know her through the PCPLD Network (which I chair, and which is organising this week's conference in Glasgow). Two years ago, she came to the annual conference because she had won our award for giving outstanding end-of-life care to someone with intellectual disabilities. It was the first time that the award winner was a mother rather than a professional, which made it all rather moving. This wonderful woman had looked after her adult daughter who developed dementia and eventually died. The daughter had Down Syndrome.

We talked and talked over dinner the night before the award ceremony. Not only about her beautiful daughter, but also about shared interests, a love of nature, creativity, even Pilates. Last year we had dinner again, as we had invited her to give a talk about her daughter at our conference.

She heard about my situation, found my blog (amazing in itself, as sending an email was a new venture for her when I first met her), and wanted to do something for me.

To think that someone I don't really know that well would spend hours and hours and hours making something for me, sourcing the embroidery kit she remembered seeing, finding suitable material for the back of the cushion, and finishing everything so beautifully (down to the piped edges, the button, the carefully matched fabric halves at the back)... it left me flabbergasted.

There was a touching six-page letter.

"I felt I had made a beautiful connection with you, however brief," it said. "You lead a team who made me feel very special at a time which was very hard in my life. Thank you Irene."

It just goes to show that you never really know how even the most fleeting of connections can touch lives.

She has certainly touched mine with her thoughtful gift. This being a Good Week, I was glad I could phone her this morning, to thank her in person.

Writing this makes me think of John, a man I met through one of my research studies. He had mild intellectual disabilities and died of a particularly nasty and distressing cancer. I spent many hours with him during the months before he died. He knew that he was dying. He talked and talked about his life. One of his most vivid memories was of a passer-by who, when John was briefly homeless and living on the streets, had asked him for directions - and then handed him a £20 note. That passer-by could never have known that many years later, a dying man still felt comforted by his kindness.

So here's to all of you who have bestowed kindness on me. I am touched.

And because of the thoughtfulness of so many of you, I am now surrounded by a growing and very happy parliament of Owls. Who knew they came in so many different shapes and sizes? One friend offered a theory.

"I assume everyone knows about your blog," she wrote, apologising for what she thought was probably my 100th owl card, "and that's why there is so much owl merchandise around."

Personally, I think it's a case of supply and demand. You just keep sending me owls (lovely!) and the shops will keep stocking up.

The Owl Mug
The Owl Scarf
Some of the many Owl Cards...
...more Owl Cards...

...and more, plus a couple of Owl Hangings

Saturday, 22 November 2014

75. The bra shop

Buoyed by a half-forgotten feeling of wellness, I decided that today, Saturday, was the perfect day for filling up the emptied bra drawer.

Amazing how much difference a few extra days off the chemo makes. I can ignore the tiredness and keep going if I put my mind to it; even the aching leg muscles give in after a few streets.

There is strong evidence that exercise helps with cancer-related fatigue, I have heard from several authoritative sources. (I thought I'd throw that in, to stop you from wagging a concerned finger at me, telling me to take it easy.)

Having only the one bra is workable but not desirable. Now that I've got my long-term Bosom Buddy (let's call her Buddy for short, as Droopy sounds somewhat unkind, and it's not that bad), I resolved to get myself some proper mastectomy bras. And if I didn't do that today, I wouldn't have another chance for several weeks.

Chemo on Thursday. Scotland on Wednesday and Tuesday. And Monday is filled with hospital appointments: not only the usual pre-chemo chat with my consultant at St George's Hospital, but also a trip to the Royal Marsden Hospital (a specialist cancer centre) to discuss radiotherapy.

That appointment with the radiotherapy consultant came in the post yesterday, at long last.

Don't get me started. You wait for months, you chase it up several times, you get more and more frustrated that you still don't know whether the impending last shot of chemo spells the end of cancer treatment - and then when the appointment finally comes, they give you all of three days' notice. Never mind, I should have remembered Rule Number One Of Being A Patient: BE PATIENT. I have nothing else to do but sit and wait and wait and spring to attention when summoned. I don't have work to do, or a family to run, or a Christmas to plan. 

But at least the appointment doesn't clash with Scotland. I am desperate to find out whether (and if so when) I will need radiotherapy after the chemo.

So today is the day for shopping.

There are some excellent mail order companies for mastectomy wear. I'm discovering a whole new world out there.

But one of the perks of living in London is that you can visit the actual shop. So, feeling sprightly and grinning like a Cheshire cat, I walked to the tube this morning. I haven't been shopping for months, apart from the occasional impulse buy that would qualify as Truitje Kopen, also known as Top Shopping. I actually need the new clothes.

I got off the tube in an unfamiliar part of London. The long road didn't promise the glamour I was hoping for, with dirty-grey-or-brown buildings, the odd tattoo parlour and a suspiciously dark shop with a flashy red sign.

But once I found the mastectomy fashion shop, with its discreet window display, it was brilliant (and yes, glamorous).

I could hear one other customer chatting to a shop assistant in a cubicle. Her friend was chatting to the other shop assistant as if they were old mates. I know she was a friend, because I asked her: was she a customer, or the customer's friend? ("Both," she said after a bit of thought. "I've brought my friend here." This woman and her friend had got up early this morning, coming all the way from Cambridge.

This was the kind of shop, I felt, where you do ask fellow-customers that kind of thing. I can't think of any other shop where I'd be this chatty. But if you are going to discuss your personal requirements in a small and quiet place like this, you might as well involve the one or two other customers, because what else are they going to do? Pretend not to overhear, and not to be watching you? Best to behave as if you are, well, bosom buddies. Which, I suppose, we are. 

The shop assistant couldn't have been more helpful.

She let me browse (I wasn't just after bras, I wanted to try some tops and swimming costumes as well). She settled me in the changing cubicle. Plenty of space; fluffy dressing gown on a hook; tight-fitting T-shirt in a basket, presumable to see if your bra looks good under clothes (I didn't need it, having come prepared wearing my own tight T-shirt). She measured me, got me what I needed, fetched a glass of water when I was there for ages trying on almost all the swimming costumes in the shop.

The bras were great. I bought three, including one with a lacy modesty panel that will look good peeping out of my too-low-cut dresses. I also got a couple of swimming costumes, plus a foam prosthesis that weighs nothing and can be easily rinsed. It's fine wearing my current costume without Buddy, but I'll use the new costumes for lounging around a pool or on a beach, when I don't want to embarrass the children (and, let's be honest, I'll feel more at ease without the lopsided look).

A good hour later, I was outside again with my bulging bag.

Why stop at bras? Miraculously, I still had some leftover energy, so I got on the bus to Oxford Street.

Trousers! Jackets! Shirts! Scarves! I need some of these, I told myself; and even if I didn't, well, there's the old cancer excuse that always works well. I deserve it! I've got cancer!

The bus journey delivered one of those small rites of passage that might pass unnoticed. Every double seat was taken by a single passenger. When a young woman came up the stairs, appraising the situation, she walked to the back of the bus, past all the other passengers flanking an empty seat, and chose to sit down next to me. Clearly, I have now entered a stage of life where I am considered Harmless, with my old and tired looks, my wrinkles and raincoat and scarf. (This is in sharp contrast with my harmless son, who finds that women - it's mostly women - cross the road when they see him coming. Even when he's wearing his smart school jacket and tie. Tall teenage boys are scary; tired-looking middle-aged women are safe.)

When I came home again some hours later, my wallet was a few hundred pounds lighter, but so was my spirit.

And I've caught the clearing-out bug. That dustbin-full of bras has inspired me. (It's not just me: a blog-reading friend told me that she, too, has been inspired to throw out her old bras.)

Here is the drawer that always took such a lot of rummaging before finding the right things - and let's be honest, the right things are always the same things. It now even has space for those swimming costumes.

The blissfully clear spacious drawer

I'm not even stopping at drawers. This evening, I took all my clothes out of my wardrobe and only put back in what I might actually wear. I tried on all the tops and dresses I feared I could never wear again, and found that with my excellent new bras, they not only look fine, but they've got a different lease of life. Worth every penny, today's acquisitions.

But all those trousers that don't quite fit, the tops I've had for decades (not joking) and always liked, but honestly, will I ever give them another outing? The things that are lovely, but they've got holes. Out with them. The bin is full, and there's a teetering pile of rejects waiting to be taken to the charity shop.

Now I've got a plan. Once I'm better (and I'll need to be quite a lot better for this plan), I am going to move beyond wardrobes and do exactly the same thing with the entire house. New breathing space, new start. I can't wait.

The charity shop pile

Thursday, 20 November 2014

74. Bosom Buddies

Remember Wig Lady? Well, it's her, running the Breast Prostheses Clinic.

Wig Lady, as it turns out, is Wig-and-Bosom Lady.

I fear as much, waiting among the proper patients, the ones with slings and crutches. The receptionist has waved me to the corner outside Wig Lady's cupboard-sized room: "Go and sit somewhere over there."

So it isn't next door to Wish You Were Hair at all. It's in the very same space, although it does feel somewhat roomier without two daughters, a friend, a bear, a pig and an owl in tow. For this particular appointment, I thought I'd rather be on my own. I haven't even brought Owl. (He doesn't need Bosom Buddies, he needs Wonder Wings. I doubt they do wings here.)

I did discuss with the friend whether that ghastly name (Breast Prostheses Clinic) could be improved on, à la Hair Today. We didn't get much further than False Friends and settled on Bosom Buddies.  

Like myself, Wig-and-Bosom Lady is without assistance today, which is a shame, because the assistant was lovely. But, thankfully, she is also without her efficient let's-type-your-choice-into-the-computer manner.

Will she remember me? Yes! she smiles. I remember you! (I suppose it's hard to forget a Bear in a wig.) Oh dear, will she ask me what on earth has happened to Denise? I can't very well tell her that Denise has never been worn and now makes herself useful as a doorstop.

Doorstop Owl and Denise
Actually, it turns out that I can. (Telling her the not wearing my wig part, that is. I don't own up to the doorstop part, and fingers crossed that she doesn't read this blog.) "Well, that's OK," she says. "Some people don't want to wear it. You just never know how you'll feel, do you? It's good to have it anyway, just in case you suddenly feel you want it when you go out."

So that's settled: we are on friendly, smiley terms, and I can relax. Which is just as well, because if you can't relax and smile about choosing a breast prosthesis, it would be a bit grim.

I know for sure that unlike Denise, my False Friend will get daily outings.

I have been getting increasingly frustrated with my Softie. It served its purpose, creating a fairly comfortable mound whilst my scar healed. But it has gradually morphed into a Lumpie, despite various re-fillings with the invaluable Brain Fluff. Breast Care Nurse number 1 was quite wrong when she said it could be easily washed and dried in a jiffy. I have resorted to Sock Bra on numerous occasions, which doesn't do much for one's feelings of dignity.

It's not just the dubious shape of either Softie or Sock. It's also their tendency to migrate to the wrong corner (upwards, preferably), despite being tethered with a safety pin, creating an effect that is more Picasso than Botticelli.

No matter. Breast Care Nurse number 1 had said that after a month or two, when the scar had healed, I'd be given a proper prosthesis. A nicely shaped one, fitted to match her sister.

But where was that appointment? Month after month went by, and I was too busy feeling sick and tired to remember asking. Finally, I did; by now, I had been passed on (thankfully) to Breast Care Nurse number 2, who was more efficient with referrals.

An appointment arrived in the post. It coincided with Chemo number 4. I rang Bosom Lady (not realising I was speaking to Wig Lady).

"I'm only here on Wednesday afternoons," she said. "Tell them to give you the chemo after this appointment."

I didn't (I knew where my priorities lay), which was just as well, as I ended up staying in the chemo lounge for over five hours. So a new appointment was made for Bosom Buddies. Again, it coincided with Chemo Day, but that was OK because the chemo has been postponed.

It's a waste of energy to get annoyed about little things, but it does annoy me that I had to chase this up.

I need help with this kind of thing.

It was the same with getting a mastectomy bra. I was making do with the safety-pin-and-softie-and-old-bra technique. I knew there was such a thing as a special bra, but I didn't have the energy to source one and see how much it would help. Then my sister turned up, who happened to have one ("I found it in a department store and it's so comfortable, I thought, why reserve it for women who've had a mastectomy?"). It fitted me perfectly, so she gave it to me. Daily bliss. The lining has been turned into a pocket. Pop in the Softie (or the Sock) and bingo. There's still the Picasso effect, but less so.

So here I am, in Bosom Buddies, keen on a more realistic replacement.

Will I be given a catalogue again, I wondered? But no. The boxes of wigs that had been stacked up on a trolley have been replaced by boxes of boobs. Wig-and-Bosom Lady glances at my cleavage and fishes one out. "Try this, I think that's the right size."

It looks the right size, but when I pop it into the bra pocket, I am not so sure. Is it not slightly bigger than the real thing? We both ponder the matter carefully. I put my T-shirt back on for further contemplation. I should have brought a friend after all, the kind of friend who is good at the Does my bum look big in this question.

"Perhaps you do need a smaller one," says Wig-and-Bosom Lady. "I don't have one here though, so I'll have to order it. Or maybe you just need one that is..." She pats the top of my breasts, "Look here, it starts filling out a bit higher up than on the other side. Take it out and try this one."

She shows me the two models together. "See? This one is just a bit less rounded at the top."

Ah, yes, I see. "I need the droopy one," I say. "That first one was a younger model."

She laughs apologetically. "Well, you're quite young," she says kindly.

But you can't fool me. No matter how tactful Wig-and-Bosom Lady tries to be, 35 years of gravity and three years of baby-feeding have taken its toll. Now I see what caused the Picasso effect: it wasn't so much migration as the fact that the Softie, unlike the real thing, defies gravity. I have, effectively, been wearing a one-sided push-up bra.

Once Perky is replaced by Droopy, I look fine.

I'm told I must keep Droopy in her box, to keep her shape.
Don't want her to perk up, I suppose. I'll need a new cupboard to house the thing.
Done and dusted within 20 minutes. Droopy feels lovely, soft and squishy and gloriously lump-free. She can be washed and dried like normal skin. No need for patience and a washing line. Exit Sock Bra.

There's a nice bit of weight to her. I can't resist: when Wig-and-Bosom Lady briefly leaves the room to answer her mobile, I open one of the largest boxes and pick up an enormous Falsie. Blimey, it's heavy. Is this what well-endowed women have to carry around? 

(Are these weights realistic? Scientifically minded as usual, I take out the kitchen scales once I get home. Droopy weighs 179 grams. How to weigh the real one? Ah, I know. After my mastectomy, I asked for a copy of my pathology report... where is it... here we are. My lost breast, or rather the "specimen", weighed 410 grams - more than twice the Falsie! Well-endowed ladies, if that is the case, how on earth do you keep your shoulders straight? I look at you with renewed respect.)

Now that I've been to Bosom Buddies, my annoyance about having to chase things up is forgotten.

In fact I am rather amazed, once again, by what the NHS provides. I can come back any time, Wig-and-Bosom Lady tells me. They will happily give me another one, an extra one, a different one. I might buy a different bra and find that this shape isn't quite right for it. Or I myself might change shape.

"Get droopier, you mean," I say.

Well, yes, that is what she means, but she is trying not to say it. When asked, she tells me that my Falsie isn't the droopiest on offer, so another 35 years of gravity needn't upset the balance. 
You learn something new every day.

On my way out, Wig-and-Bosom Lady hands me a brand new Softie. She is appalled at the state of my old one.

More generous, clearly, than Breast Care Nurse number 1, who (when I asked if I could have a spare one for washing days) said no: "To be honest, we don't have that many of them." 

But now I hope I won't need them anymore. Owl can have the full set.

Spot the difference: the old Lumpie and the new Softie
This morning, I finally did what I have been avoiding for months, as I just couldn't bring myself to it.

I emptied my drawer of all my old bras and binned them.

You change your life in small steps, and this was one of them. It was a close shave, but I didn't cry. The dustbin lorry is coming tomorrow morning.

Tuesday, 18 November 2014

73. The guessing game

Tomorrow would have been chemo day, but I've been given an eight day reprieve. You may remember, I'm due to chair a conference next week. It's in Scotland. I'll need enough energy to get that far: the train to Glasgow takes twice as long as the train to Paris.

It is hard to exaggerate the relief I feel at having a week off.

It's not even a proper week off, because that would imply not feeling ill. The past week was meant to be my Good Week, but Good clearly is a moveable feast. I vaguely remember how during chemo cycle 1, my Good Week involved long active days reminiscent of how things were, once, when I was at the peak of health.

Nowadays, good means not in bed.

It no longer seems to include long walks/swims/bike rides. Or, for that matter, short walks/swims/bike rides.

I am managing the sedentary parts of my life quite well (working at my desk, reading the newspaper, chopping onions, chatting to teenagers, that kind of thing), giving me an enjoyable illusion of not-being-ill. Until I get on my bike, as I did this morning.

I hadn't cycled for weeks. Worried that my tiredness is partly due to a lack of physical activity (well, doesn't that seize up your muscles and stiffen your skeleton?), I thought I'd do the five minute ride to the swimming pool. It took me twice that long. I almost got off to walk the rest. Short of breath, palpitations, and worst of all, leg muscles screaming at me that I should stop. It is not any better than last week; if anything, it's worse.

I never, ever thought that this might happen to me. Getting off my bike after five minutes? I never even thought that cycling qualified as exercise. It was just an easy means of getting from A to B. What happened to the girl who merrily cycled to England at the age of 19, from Amsterdam to Belgium and from Dover to Milton Keynes?

Swimming was better, but only just. Ten minutes is about as much as I can manage these days.

Mind you, it did make me feel better. But it also brought home how weak and fragile I am, and how glad I am to have this week's grace. With each round of chemo it takes longer to crawl back from the brink. This time, I have been much more of a hermit than before. I've been more careful about going out, not only because of the exhaustion but also because of the infection risk.

It wouldn't take much to dip into feeling useless, low, or even depressed.

Thankfully, I have avoided that pitfall so far (well, apart from the sudden collapses and the weeping in woods), but I can see how easily it can happen to the most cheerful of cancer patients.

We had quite a discussion with my consultant about the wisdom of delaying the final dose of chemo.

She was keen on giving me the highest possible doses of poison in the shorted possible time frame. I was keen on making it to Scotland, but not if it risked scuppering my chances of a long life. Would it?

Well, here's the difficulty: nobody quite knows. It seems unlikely that a couple of sneaky cancer cells escape extermination because the final attack was delayed by a week, but I suppose you never know. Chemotherapy, I have now realised, is an imprecise art.

"There might not have been any cancer cells to begin with," said my consultant. "Or if there were, they may all have been killed off with the first cycle of chemotherapy. Who knows."

Now there's a thought. I can't decide whether it's a happy thought (Hurray! No cancer cells! I'm cured!) or a sad thought (All that effort for nothing!).

There is a whole world of research out there. I've read some of the papers, but it doesn't really help. What do these studies show? Percentages of women who survive for 5 years, 10 years, 20 years. I don't like looking at the statistics, because in my mind, I have a 100% chance of surviving 20 years. Actually, make that 40 years.

Research papers on treating women with early stage breast cancer talk about survival rates of anything between, oh, 65% and 98%. (I notice that none of them say 100%. Shame.) It depends on the cancer, the treatment, the era, the country. So many imponderables - it's best not to ponder.

I remember discussing with my surgeon whether I could delay my mastectomy. She rattled off some statistics (they sounded quite good), but then she said, wisely: "It's only numbers, Irene, and you know it could just be your number."

So they're guessing, really, all these cancer doctors.

And because it's so complicated, I'm happy to leave the guessing to them - most of the time. But in the case of this week's delay, I listened to my breast care nurse instead.

"Oh, she would say that," she laughed dismissively when I told her that the consultant wasn't keen. "She's a doctor. But honestly, lots of people miss a week. They pick up an infection so they have to delay things. It happens all the time. And if going to your conference makes you feel like a normal human being again, that's worth something, isn't it?"

I wouldn't go as far as predicting that I'll feel normal, but in this case, I'm happy to risk my chances of living another 40 years.

I am not completely let off going into hospital tomorrow, because I have been given an appointment for the Breast Prostheses Clinic.

That's what it says on the letter, Prostheses, plural. I suppose some women do need them in plural.

And yes, you've guessed it: it's in Clinic 2. Right next door to Wish You Were Hair, presumably. I'll let you know.

Wednesday, 12 November 2014

72. Hair everywhere

Now that we are on the subject of hair, here's a conundrum.

There is hair everywhere. 

There has always been hair everywhere, but now that it's not on my head, I sort of feel that it ought not to be anywhere else either. Not on my towel or on my jacket. Not on my desk or in the shower. Certainly not in my hat or my soup. Yet I find hair in all these places.

There has always been hair in all these places, but ignoring the long blonde ones (daughter) and the short multicoloured ones (cat), I always assumed that they were mine. It seems, however, that I have in fact been completely innocent of shedding. Clearly, other people's hair is capable of travelling through space and attach itself to me.

So now you know. You heard it here first.

That hair on your coat/plate/pillow? It's not yours.

Tuesday, 11 November 2014

71. Neither hair nor there

FaceBook has been trying to persuade me that I will look good with a Very nice short hairstyle, repeatedly sending me hopeful suggestions and exhorting me to be brave with the scissors. To me, these coiffures look positively bushy, quite apart from the fact that they will take me a year or two to grow.

Why do they keep sending me these posts? One of my friends knew. "They think you are Denise," she wrote in response to my baffled question.

This week, FaceBook (or should that be Big Brother?) has finally figured out why Denise is not responding, and has moved on to the next suggestion. Here it is:

Better be careful - before I know it, I'll be swamped with ideas for helpful facilities ranging from the Bigger Breast Clinic to the Wailing Women Support Group.

The hair loss thing has been rather intriguing. 

I have got to the point where I really, really don't mind it. I tried on Denise again the other day. Looking in the mirror, it just seemed utterly ridiculous. How could I ever think that she looked inconspicuously normal?

But then I look ridiculous in all my old photos, except perhaps the ones with the pixie cut. Too much hair everywhere. The thing is, I've got used to the status quo and no longer notice it or think it strange.

So, not wasting any energy on worrying about looks, I can turn my attention to the scientific process of chemotherapy-induced hair loss. It is not at all how I had imagined it. I thought that you lose all your hair within a matter of weeks: head, toe and everything in-between.

Not so. You may have spotted it on yesterday's picture of my arm. No? Have another look.

That's right. It's not all gone, my hair.

It has just been thinning and thinning. My leg hair has almost, but not quite, gone. If I'd been paying for my brazilian, I'd want my money back - it is, as yet, incomplete. (Almost there, but with only one more round of chemo to go, I'm beginning to doubt I'll get the full monty.) I still have one half-decent eye brow; on the other side there are so few hairs left that I could count them. (Let me do that now... ehm... it's 34. Actually, no, 33. There goes another one.) 

Only my head hair came out in vast quantities, that eventful day just before my second round of chemo, when I pulled it out in handfuls. I shaved the rest, because as you may remember, it wasn't really a good look, and no amount of comb-overs could rescue it.

I thought that would be that, the stubble would gradually disappear. No such luck. It is still growing at an apparently normal rate. I've been shaving my head twice a week, to stop the above non-look reappearing.

Looking around the chemo ward (especially at night when scarves and wigs come off), I note that people don't go bald completely. They are left with wispy tufts here and there, a style that has not, so far, made it onto the suggested FaceBook pages.

They are literally clinging on, the remaining hairs. They stay firmly attached. Occasionally, there is a day when they seem to be yielding easily to my experimental plucking, but mostly, they survive against the odds. You have to cheer them on, really.

This is all, of course, neither hair nor there. It really doesn't matter, except perhaps for one niggling thought.

If the chemo hasn't managed to kill off all my hair, how can I be sure that it has managed to kill off all my cancer cells...?