133. The VIP lounge revisited

Ah, the VIP lounge. Can I ever forget?

The chemotherapy chair

If you have followed this blog, then I bet you remember it too. In fact my observations written whilst sitting in my chemotherapy chair have worked their way up to the top of the "most read blog post" list, past my observations on the advantages of having cancer rather than depression (currently, and quite rightly, number 2 on the list) and my thoughts on my mother's grave (strangely, that one stands at number 3).

Yesterday, I found myself back on the chemo ward.

This is how it happened.

Despite working as a researcher at a university that sits in the hospital building, I haven't had much to do with the cancer wards before. But last month I was contacted by a film maker who wanted make a short educational film about cancer and learning disability for Macmillan Cancer Support. She was looking for someone with learning disabilities who could talk about what it's like to have cancer. Almost inevitably, she had found her way to my door (not many people specialise in this area).

"You want Amanda!" I said.

I have told you about Amanda before (long time ago, but worth reading again: she is a rather extraordinary woman). Amanda has learning disabilities and has recovered from cancer. The whole rigmarole: surgery, chemotherapy, radiotherapy.

Last week, we all squeezed into Amanda's flat. Standing room only. As always, she spoke eloquently of her experiences, remembering them vividly, even though it was over a decade ago.

Filming at Amanda's flat

Now here's the thing. When Amanda and I first wrote her cancer story, I thought it was a story about learning disabilities. That was nine years ago. But when I re-read that story on the tube on my way to her flat, I discovered it was a story about cancer.

Most of Amanda's cancer experiences could have been mine.

It made me cry.

In fact, during my chemotherapy treatment I'd been wondering how on earth she managed to get through it all. I needed an iron will to return to the dreaded chemo chair again and again. How much harder for people who may find it difficult to understand why they need to sit in that chair and be poisoned.

Amanda not only understood this, but she had the necessary iron will. I went to talk with her a few hours before the film crew arrived, because I wanted to know more.

Yet again, Amanda spoke of her mother who had died of cancer when she was young.

"I know it sounds stupid," she said, "but when it was really hard, I talked to my mother. I felt that she was there with me."

Only now do I truly understand that this is far from stupid, and far from strange. My mother, I told Amanda, was there too, at my bedside in my darkest hours, even though (or perhaps because?) she was dead.

Next up was me.

The film crew came to my office yesterday. I was willing to be interviewed (although much less of a natural screen presence then Amanda, which you will certainly agree with once the film comes out). But I insisted that there should also be a "real" nurse in the film, on a real hospital ward.

Which nurse? Which ward? I rang the hospital's learning disability nurse specialist. What would he recommend?

What he recommended was Lovely Nurse on the chemotherapy ward.

So there I was, last week, back in the VIP lounge to find Lovely Nurse and ask her if she was willing. I walked in with my new curly locks and my professional badge, feeling much happier being Staff rather than Patient. Would anyone recognise me?

Saviour Nurse did. Immediately. She looked up from what she was doing and rushed over, hugging me: "Ooohh, how good to see you, how nice of you to come back here!"

I was impressed. Different looks, different context, and it's six months since I had my last shot of chemotherapy.

Most other nurses did a double take. I could see them thinking... I know that woman from somewhere, but who is she? But it didn't take them long to figure it out. This is an excellent ward with excellent nurses. Lovely Nurse herself remembered me too. She treated me once, when I had to rush in with a suspected bladder infection.

And yes, she was more than happy to be filmed.

It was a rather different arrival-on-the-chemo-ward yesterday.

Instead of turning up with a supportive husband/daughter/friend, an undemanding magazine and a comfortable T-shirt, I came with a camera man, a film director and side kick, a colleague/actor/friend and a confident mascara-and-lipstick smile. It was only Amanda and Lovely Nurse that needed filming, so I cheered them on from the side lines.

Knowing the ward had its uses. When I spotted that there was a free corner in the VIP lounge (two patients in adjacent chairs had just left), I knew other patients might be waiting but there was a possible gap. Could we film there perhaps?

We could.

Amanda and Lovely Nurse in the VIP lounge

"What is it like," the film director wanted to know, "being back on this ward?"

"Fine!" I grinned. "Much nicer this time round. No problem at all."

So I thought. But then I had to rush into the Ladies with a sudden bout of nausea, retching into the toilet bowl.

"This is bringing back memories," Amanda agreed. "I feel... not upset, but strange. I have butterflies in my stomach."

Clearly, a cancer year is not easily erased. We enjoyed the experience, but afterwards we needed to sit down together with a cup of tea.

Even now, looking at that chair in the photograph at the top of this blog post, I feel faintly sick.

The only thing to do, we knew, was to laugh about it all. We had both brought our chemo wigs, just for the fun of it. We thought we might put it on a PowerPoint slide next time we give a talk about cancer together.

So here we are. Onwards and upwards.

Don't we look fetching in our wigs!

Less fetching perhaps in each other's wig... 

87. The REAL end of chemotherapy

Well done, you've finished the chemo! people said to me after the final drop of poison had dripped into my vein, three and a half weeks ago. You must be so pleased!

But it's hard to feel pleased when you're laid low, which you are, in the post-chemo weeks. I knew in my head that the worst was over, but it still felt bad. You, faithful readers, know all this. The deepening exhaustion that follows each bout of chemotherapy; the tears when things just don't seem to get better. 

Only now do I begin to realise, and believe, that the chemotherapy really has come to an end.

Since the beginning of August, "recovery" meant: hide yourself away during the worst of the side effects (about ten days, usually); then take a deep breath and keep going, because you have to recover just enough to cope with the next dose, which is just around the corner. It's always - always - just around the corner.

Perhaps that's one reason why I felt so low and weepy recently. I think that in my mind, I had to be better three weeks after my VIP session. You always have to be better three weeks later, because that's when the next blow comes along. So you do your very best to stay positive, because if you don't, you just can't cope with another chemical attack. But it gets harder every time, and recovery takes longer every time. I started to wonder whether I'd make it to the three-week-date. Wouldn't I still be too exhausted?

This time, the magic three-week-date came and went. It was four days ago, and it heralded a subtle but significant shift. It was only then that the end of chemotherapy became real.

No more chemotherapy. 

There I was, feeling too tired to do much, but this time, it didn't matter. If I had needed eight cycles (as some women do), I would undoubtedly have pulled myself together, taken that deep breath, put on my smile, gone back to the VIP lounge, here's my arm, I'm ready. You can force yourself to be ready, if you have to.

But I don't have to. Not anymore. So the recovery and the tiredness take longer, simply because that's OK now. And boy, the relief! That feels good! It didn't, three weeks ago, because my body didn't quite believe it. But now, hurray and hallelujah, I can just sit back and watch my energy seep back in, and not worry that it's going to be knocked out of me again by an ever-imminent trip to the VIP lounge. 

(You may note that I am conveniently ignoring the radiotherapy-induced tiredness that I've been promised. I just can't believe it will be as bad as the chemo. Famous last words perhaps, but hey, just leave me with my illusions for now.)

Slowly, slowly, things are getting better.

Every day, I can sit up a bit longer, walk a bit further, talk a bit more sense, do a bit more Christmas shopping.

I am clawing back my old life.

Yesterday, I picked up my guitar for the first time in, oh, months and months. Everything needs building up again. My calloused fingers have softened with the non-playing, and softened even further with the chemo-induced skin-peeling. One song, and the guitar strings were imprinted deeply and painfully on my baby-soft fingers. Never mind: my muscles will strengthen. My hair will grow back (one day... at the moment I'm still losing it). My fingertips will  harden.

I almost cried, sitting there, plucking the strings and singing. Singing! I can get through a whole song without fainting! Oh, the joy music-making can bring.You know what? I'm going to sing in church tomorrow, guitar and microphone and all! Before I could change my mind, I emailed my fellow musicians with this plan. 

And I did it, this morning. Ave Maria and Oh come oh come, Emmanuel. And unlike last time, I didn't collapse. I cannot tell you how wonderful it was to be back playing music and basking in everyone's delight to see me.

Last night, I went to a Christmas drinks party. Haven't been to a party since the spring. I needed an afternoon snooze in order to manage it, but still, it looks like I don't have to keep saying Sorry, I can't.

(And the compliments keep coming. You look wonderful! Nice skin! Nice scarf! Nice everything! I don't know how you do it! I can tell them how it's done: a steroid-induced moon-face and a make-up lesson combine in covering up cancer-induced misery. But it's nice to hear, all the same.)

The thought of doing the MoonWalk has really inspired me.

It is giving me hope and something to aim for. The Night Owl Team has grown to 12 walkers, with more people planning to join or sponsor us (which you can do here... hint hint), so I can't let the side down. I've even bought myself a new pair of walking shoes.

These shoes are made for walking...

So here I am, facing a rather lovely Christmas break because there is nothing to worry about.

I look back at 2014 and see some pearls shining in the mud. I won't go as far as saying that cancer has been A Good Thing. It is never a good thing. It's bloody awful. I would never, ever choose to have it. I wouldn't wish it on my worst enemy.

One day, a while ago now, I made the mistake of looking at blogs of other breast cancer patients. Mistake, because those blogs absolutely don't help me have a better understanding of my own situation. I don't really want to hear other women's stories, because my own is quite enough, thanks very much. But that day I couldn't help myself, and once you start blog-browsing, it's rather hard to stop.

I found the blogs that were full of Cancer has been a wonderful thing to happen to me! I have discovered what matters in life! especially annoying, however true I know it is that cancer helps you (re-)discover what matters in life. I can think of better ways of discovering such truths.

I am saying this to validate the rotten feelings of other breast cancer patients reading this blog, before I dare go on to say...

...there have been definite pearls, in the shape of the love and support I have received from family and friends and even relative strangers. 

One woman's response to another blogger has stayed with me, because it was so very sad. Sadder, almost, than the blogs by women who are looking at incurable cancer or even imminent dying. (Warning to other women with breast cancer: Do Not Read Such Blogs!). Here it is.

"I am almost 69, live alone, divorced, childless and - unlike most bloggers it seems - I don't have the requisite army of friends and family waiting to rush to my aid! All the self-help books and general info seem to stress the importance of a support network, but surely there must be SOME folk out there who don't have one? Friends are ok for one-off stuff, but regular visits? Not really. It's bad enough having to deal with this vile disease without having anyone to rely on. People tend to make vague promises but don't follow through, so I will likely have to rely on paid professionals to help as I daren't assume anyone is going to step up to the plate! It's a bit difficult to feel positive or hopeful right now."

I look forward to Christmas, knowing that I am loved, and that I have not had to face this devastating disease on my own.

Last year, I might have hoped that to be true. Now, I know it. How lucky is that?

80. A preview of old age

There is a pattern that I should recognise by now, but my reluctance to believe it is one of its symptoms. 

More than a week after the chemo infusions, emerging from the worst of the side effects but still feeling so weak and tired that it is hard to stay positive. I can't really believe that I will ever be fit and well again. 

It is like having a preview of old age. Very limited amounts of energy, strength, puff or concentration. Stiffness and aches everywhere. Having to reserve the most comfortable and most coveted chair, and nobody questions it (although there are wistful looks). This morning, I had to ask my younger daughter to open a bottle of orange juice because I couldn't twist the lid.

My sister arrived yesterday and I found myself sitting behind the geraniums, looking out of the window, watching and waiting. Honestly. It's what my mother used to do if she expected a daughter's visit. I would never, ever be like that. I would always have other things to do whilst waiting for the doorbell to ring.

What I hadn't realised was that when your strength fails, waiting for your sister to turn up becomes a major event that needs focus. Back to mono-tasking.

I am convinced that nobody is interested in my tales of woe.

This is a recurring theme. Why write a blog? What to write? Why bore the world? The combination of bed and iPad makes writing one of the few things I could do, but I lack the inspiration.

I'm writing this only because people have started asked me how I am, so I suppose I'd better put word out that I AM ABSOLUTELY FINE. 

Really, I am (so I tell myself). Fundamentally, deep down, things are fine. 

The side effects are manageable. There were a couple of truly miserable days, when you just have to wait for time to pass. Shivery, aching bones, utter exhaustion, that kind of thing. Think flu. I've watched the thermometer in alarm as the numbers crept up towards 38 each evening, four nights in a row,  but it never quite got there so hospital was avoided. Thank goodness. I did pack my bag though, in case of an emergency exit.

I am now left with that overwhelming tiredness. Not just tired, but physically frail and weak. It really does get worse every time. My muscle strength has gone. For the first time in living memory, there is flab instead of tight muscle, on my calves, my stomach.

So I have found myself occasionally bursting into frustrated tears, feeling sorry for myself. (Thankfully, I also keep finding myself grinning broadly at the realisation how lucky I am to have a nice comfy bed and a supportive family. It's up and down, up and down.)

What has kept me going this time round is the happy knowledge that I won't have to do it again. 

Ignoring the minor issue of radiotherapy. At least there won't be a top-up of Poison. Chemotherapy seems to be the hardest of all cancer treatments. It will take months and months to purge my body of the vile chemicals, but at least I can tell myself now that the only way is up.

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)

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.

70. Never stray too far from the chemo ward

"I am back at my desk this morning and should manage 3 working weeks now," I emailed my manager today. "Unless I pick up an infection."

I have been given a week's grace before the final cycle of chemo, because of a conference I am due to chair at the end of the month. So instead of three weeks, I now have four weeks in-between my poisonous sessions in the VIP lounge.

It is an unexpectedly cheery prospect. I am slowly emerging from the battlefield, but instead of having to go back for more chemo next week, I can now wait until the week after that. I hadn't quite realised how relentless it has been since the start of chemotherapy in early August. Never more than a handful of good days before being knocked down again. Having this extra week feels like being given an unexpected day off school.

Hence the optimistic email message. I glossed over the slowness of work. Sitting at my desk is tiring, but at least I've got a part-time job that can be done in stages, stretching my three working days across the entire seven-day week. (How on earth do people on chemotherapy manage more demanding, full-on day jobs?)

And, stupidly, I glossed over this morning's niggling symptoms of a urine infection.

I had been planning to take myself off to the south coast today, along with my laptop, to spend a few rejuvenating days in the countryside. My husband had worried about me being there by myself, but I was feeling fine, so what could possibly go wrong, far away from the sniffling crowd? I was unlikely to pick up an infection from rabbits or foxes.

I hadn't counted on bladders misbehaving. Hm. Better give the hospital a ring then, reluctantly. They won't share my "wait and see" approach,"  I grumbled to my husband. They'll want me to come in. Left to my own devices, I would just have drunk gallons of cranberry juice and hoped for the best.

At least it was weekday hours, so I got the lead cancer nurse instead of the on-call doctor. She summoned me into the VIP lounge rather than into A&E, which was far more efficient.

My email message was not so much Wishful Thinking as a failed attempt at a Self-fulfilling Prophecy.

Two hours later, I was back on the chemo ward.

Blood sample, urine sample, temperature, etc etc. Thankfully, none of it was too alarming. No need for IV antibiotics this time; tablets would do. Five hours later I was sent home again with a week's worth of pills.

What seemed to alarm them much more was the sight of the vein in my arm, which started reddening after someone took blood during my hospital admission three weeks ago. "Don't worry," I was told at the time. "Just keep an eye on it. You don't want it to track all the way up your arm." It hasn't tracked up, but it's got redder and redder, as if the vein is trying to break through the skin. In fact yesterday it seemed to have reached that goal.

Saviour Nurse, busy with someone else, spotted it from afar. "That's not from taking blood," she said to the nurse tending me. "That's the chemo. It's caused by the Docetaxel." And to me: "You'll need steroids for that."

She was right, of course. She always is. So along with the antibiotics, I now have steroid cream and must take pain killers. ("But it doesn't really hurt!" I protested, reluctant to take pain killers at the best of times, let along at times when there is not much pain. No matter. I need it for the anti-inflammatory properties, apparently.)

So here is today's lesson, which I've been taught before but keep forgetting.

Don't plan anything. Things can change within a matter of hours.

On the way home from hospital, I bought six litres of cranberry juice. I've cancelled the trip to the countryside, but I'll be back at my desk tomorrow morning. In London, within spitting distance of the hospital. Better be safe than sorry, I suppose.

69. Things have been worse

There isn't much to report, so this is just a quick update to stop you worrying about me.

This round hasn't been too bad.

Yes, I've been tired. Still am. Too weak to sing in the shower (I tried and almost passed out: not enough puff).

But the bone pains were bearable and lasted just a couple of days (I'm not counting general weariness and stiffnes: that's just my new state of being). And tiredness, well, you learn to live with it. At least I am able to sit up and do stuff on the computer, read books, watch backdated episodes of Escape To The Country. It's only when I try to get active that I realise I am a shadow of my former self.

Without other debilitating side effects, this chemo cycle has been much more manageable. The thought of "only one more" is rather cheery.

I am now building things up again.

The first hint of recovery is when you find me sitting at the kitchen table, orchestrating cups of tea as the children trickle in from school. The second hint involves stirring pots on the stove. I've done both for several days now.

Four days ago, I had to abort my walk around the block, as I found myself unable to breathe properly. By yesterday, I had built it up to a half hour stroll. Today I did an hour, although judging by the subsequent length of time on the sofa and the muscle aches, that might have been over-ambitious. I'm not quite training for the London Marathon, but it certainly feels like it.

For now, it's another stint on the sofa. No stirring of pots tonight: there will be instructions to teenagers about leftovers and the microwave, and call me when it's ready.

Life could be (and has been) worse. As long as I don't let Frustration through the door, let alone Ambition, I'll be alright.

67. More chemo... Pushing on regardless

Back in the VIP lounge, hooked up to the now familiar drip stand, ready for the full wack of chemo.

I took this picture of the VIP lounge after-hours, when I was hospitalised. Empty of patients, I can now show you the whole room. My sister-in-law, who came to pick me up, was amazed. "I'd imagined it to be a bit more private!"
But I quite like the squashed-close-together effect. It makes it more interesting.

I recruited my son this time to be my personal assistant, it being the half term holidays. Following hot on the heels of a week with a German family on a school language trip, I reckon he'll have had his fill of Cultural Experiences. I've shown him round the ward ("This is where I was admitted," and - crucially - "This is where you make the hot chocolate", which is mostly what he's here for). Cancerland probably has more of an alien culture than Deutschland. Beer beats NHS hot chocolate, I suspect.

I've urged my nurse to slow he drip right down, remembering last time's collapse, so we'll be here for several hours. My son has wisely brought his homework and his headphones and a gadget with a film on it. 

Unfortunately, the nurse has put the drip in the back of my left hand. Every time I type and flex my fingers, the machine beeps in protest, so it's slow one-handed typing.

I told my consultant what some doctors had said about the cause of my temperatures.

In absence of a clear source of infection, they thought, it was probably simply a way of my body protesting against the invasion of Docetaxel (the vicious chemo drug). The consultant batted this theory away as if it was a noisy but useless insect.

"I have never heard of that," she said in a What on earth do they teach the doctors these days kind of voice. "You must just have had one of the more obscure viruses that we haven't tested you for."

This is the problem with an imprecise art like chemotherapy. Or with any kind of medical intervention, come to think of it. Doctors and nurses contradict each other, sending me to search the archives of the British Medical Journal and The Lancet for the research evidence. But this time, I took the consultant's word for it.

So I agreed to her suggestion that we push on as planned. She did offer to reduce the dose by 10 or 20%.

Oh dear... Ten minutes into the Docetaxel, and suddenly I can't breathe. Head swimming. Excuse me a minute...

90 minutes later:

Back again. It was a mild reaction this time, just shortness of breath and a whoozy brain. I've had extra drugs, making me rather sleepy, but never mind, I've got "Bed" booked in for the next fortnight. Aromatherapy Man has been round to work his magic, adding another soporific layer. Now the Docetaxel is back on, and I'm determined to finish writing this blogpost.

"And the rationale for reducing the dose of chemo would be...?" my husband wanted to know.

Well, there wasn't really one. Not a physical one, anyway. But this particular chemo drug, she explained, is renowned for knocking people out completely. I have this image of myself, running, walking and then crawling to the finishing line, flattened by each round of chemo, and every time I scramble back to my feet I get another wack over the head, sending me face down into the mud again. "Getting there! Only two more!" people tell me encouragingly, but at the face-down times that seems an impossibly long way to go. Don't tell me... Two full rounds, almost two more months of eating mud. Help.

"I saw a patient this morning," the consultant went on, "who was so knocked out by her first dose of Docetaxel... I thought, if I give her the same dose again, I won't be able to get the last ones in."  

"She won't come back", was the implication.

And who could blame her? Why willingly come back for more, if it makes you so very ill? Sometimes, the misery just outweighs the benefits. I also think of the many people who have little grasp of possible benefits hiding far into the future, people with dementia or intellectual disabilities or simply live-for-today attitudes. The mind boggles. Even I, with all my professional expertise and quiet fortitude, have to brace myself at the sight of the VIP lounge. Don't go in there! my body warns, sending me a complimentary wave of nausea just to convince me. They do nasty things to you!

But here I am, and it's not just because the consultant has convinced me that my body will cope. It is also because I look back through the distorting tunnel of time, and I think, Well, it wasn't too bad, really. I've just got back onto my feet and I can see the finishing line myself now. Who said again that I had only two more to go? Thank you! Now there's an encouraging thought!

Back me up here. It wasn't that bad, was it? Fevers and hospitals aside, I feel better able to cope with tiredness-beyond-tiredness and bone pains than with the nausea and chemo tongue combo. And, I reported to the consultant with a certain degree of relieved triumph, I didn't get the numb fingers thing! Hallelujah!

"No," she dropped in casually, "you don't usually get that until the second time." Oh. There I was, counting my chickens, or, as they say in Holland, selling the hide before I shot the bear.

My bag of Docetaxel has almost emptied itself into my veins. I'll go home soon to an empty diary and a beckoning bed. I'm almost, almost looking forward to it. But this time, I've got my hospital bag ready just in case.

Goodnight and see you in a while.

Let's just hope that at the end of this chemo cycle, I'll have some hatched chickens and a bear hide to sell.

63. More hot chocolate

There I was yesterday, on the phone to the on-call cancer doctor at the hospital, trying to convince her that it wasn't too bad really. I've kept a careful temperature chart and it's been up and down, but I've just had two readings of 38 degrees and I'm doing as I'm told, which is to report in as soon as that happens. 

(I was tempted not to. Wait and see. Don't want to be summoned back in. But then I decided that it was not worth risking my life.)

The doctor was having none of it. Solid temperature? No excuses. Got to come back in, and yes, you'll have to stay overnight. How soon can you be there? Hurry, hurry!

This time, my children barely looked up from their homework. Mum going off to hospital again? OK, bye bye, see you. Although my younger daughter gave me a big hug and handed me a quickly scribbled piece of paper on my way out. I don't care if your sick or not I will always love you. Aahhh.

It was evening time, a full house in A&E, people queueing in the corridor. My husband marvelled at the queue jumping power of a cancer patient on chemotherapy. We were whisked through again, more fluids and IV antibiotics, waiting for a bed. But this time, I didn't feel half as ill or frightened..

So I'm back on the cancer ward. Same room.

Same hot chocolate making facilities (although I'm pleased to see Jenny has made it home).

I'm a bit puzzled and frustrated because unlike last time, I am now sitting here feeling fine (well, everything is relative). Last night's temperature has settled. My white blood cells have taken heed and multiplied so spectacularly (probably thanks to the daily boosting injections) that any bug with invasion plans would be foolish to even consider me a target.

And yet I've just been told I will have to stay in at least another two nights. They want me to have IV antibiotics for a couple of days. They don't want to risk another temperature spike at home.

So it's back to making patients' beds and finding our what their stories are. 

And finishing my book, and looking at cats on Facebook. And keeping my fingers crossed that I don't have to pull out of our short family break to Paris in three days' time.

62. Hot chocolate on the cancer ward

My fellow patients on the cancer ward are a seasoned lot.

As I am wheeled into the four-bedded bay, they welcome me warmly into the sisterly fold. They nod and smile with knowing resignation, yes, we're all in this together.

"Hello, I'm Jenny*," says Jenny from across the room as she passes my bed with an empty cup. "We usually have hot chocolate before bed. Would you like some?"

Actually, I would. I haven't eaten since lunchtime. I can just about sit up to drink it before collapsing again. 

The relief of arriving here, into the relative calm with a soft and pillowed bed and competent nurses, is enormous.

All I want to do is sink into the mattress and not get up for several days (which, as it happens, is exactly what I did). I am happy for my husband to go home. There is a family to sort out. I think of my mother who, in her dying moments, didn't want me to stay because she worried about my children being without me.

"Did you have to wait long downstairs?" asks Jenny, ready to settle in for a good old chat around the hot chocolate. I can just about gather enough energy to form the words "No... sorry, but I'm really tired," feeling a bit rude, but what can you do? She understands.

In my feverish fog, I wonder about the strange uniforms nurses are wearing these days, but then I realise it's Tabiq*, the patient next to me, pressing the buttons on my drip stand to stop it beeping.

The drip stand is pressed into serious action. There are medicines and bag after bag of fluids - I stop counting at seven litres. I don't sleep much, kept awake by beeps and snores and fever and the hourly run to the toilet (courtesy of the 7+ litres of fluids) and the discomfort of having to keep my arm straight because they've put the line just in the crook of my elbow, and nurses turning the light on when someone needs them at 2am.

And by the newly arrived and quite severe bone pains. It feels like having a very bad flu, what with the aching hips and muscle pains. Except that now the bones in my feet are especially painful, which is very strange.

There's also Geraldine* opposite, who has someone ringing and ringing her mobile at 5.30am (why on earth??), just an hour or so before she sleeps through the annoying ring of her mobile phone alarm clock (nobody else does). Every morning, as it turns out.

The fevers last about two days, spiking up and down. The bone pains, too, last a couple of days.

On Sunday, I am again given the option of going home (despite temperatures still approaching 39 degrees), and again I choose to stay. I can hardly sit up (too exhausting) and am quite content to just lie here, making an Irene-shaped dent in the bed whilst things happen around me, without me.

The nurses, I notice, are kind.

On my post-lumpectomy/mastectomy ward, there were quite a few nurses who would come and do things to me without even looking at me. Here, I've met only one or two of those. They are usually the ones who move about in a resigned and bored-looking manner, taking blood pressures and temperatures without a word or a smile.

(Same in the Resus Room. All nurses and doctors there were excellent, introducing themselves clearly, explaining what they were doing and why - but you still get that one nurse who just comes in, looks at my notes, writes in them, fiddles with syringes, and leaves several minutes later without having said a word to us. Why become a nurse if you don't want to look at patients?)

Most nurses here, though, seem to enjoy their job and like being with patients.

Having said that, there is a quiet efficiency and competence running through looking after us that has just a touch of the conveyor belt about it. This strikes me when, during the bedside handover on my first morning, one of the day nurses turns to me with compassionate eyes and says, "It will get better, you know. It will."

I realise that this is the first time any of the endless doctors or nurses has acknowledged that this episode must have left me feeling miserable, frightened or despondent (in my case, all three). It almost makes me cry. For the first time, I feel acknowledged as a human being with a story.

Most nurses, kind and competent thought they are, have no idea who the patient in bed 16 is. Perhaps it doesn't matter... at least they're saving me from collapse, and that's the main thing.

She is right, though. It does get better.

By Monday, my temperature has dropped sufficiently for me to be able to read a book (although not enough to make me want to sit upright). Again, I am offered the chance to go home, and this time I take it. Even though my white blood count has dropped from absolutely fine on Saturday to well below normal today.

But then, with my drugs and discharge letter ready and my husband on his way, the doctor returns. "Sorry," she says, "but actually, we want you to stay in another night. Your own consultant is coming in tomorrow and we think you should see her."

Oh no. Can't I go home and come back in tomorrow to see her? No, it doesn't work like that, apparently. So I resign myself to spending another night among the snores and singing mobile phones, pondering the irony. First they want to send me home but I refuse; then I want to go home but they refuse.

By now, I am feeling much better and am even wandering about a little. When 80 year old Gladys* arrives in the bed vacated by Tabiq, looking tired and ill and puzzled about being admitted to hospital (but sporting a lovely haircut), I am the seasoned patient welcoming her warmly into the sisterly fold.

"Hello!" I say, reaching across the curtain. "I am Irene. Welcome to this room."

It is a bit like being very young again, travelling around, joining groups and communities where you sit around at midnight, getting to know people from all walks of life thrown together by a common desire to spend a few weeks marching for world peace. We stand around with our hot chocolate, chatting, Jenny and I.

"Never tried hot chocolate," says Gladys. "Perhaps I will."

She emerges from behind her curtain, looking at us with a mixture of fear and bravery in her face.

"I have taken off my wig!" she says.

So she has. This, apparently, is a big thing for her. She does not want people to know about her cancer ("they don't stop asking about it then, and I don't want that").This lovely retired school teacher, who lives on her own, had her first course of chemotherapy for cancer eight years ago. She was so insecure about her changed looks that she only went out after dark. And that was with her wig on.

"But now I saw you, and you look beautiful, and I thought, why not? You are so wonderful and smiling all the time!" (She clearly hasn't seen me when I came in here. And she hasn't seen my quiet and exhausted weep behind the curtains, in my husband's arms once he'd hopped onto the bed. No-one has seen that.)

But wow, Gladys. I have been puzzled before, and am puzzled again, about why I have seen no-one else with a bald head in either the VIP lounge or the cancer ward. I can't even imagine what it must be like to wear a wig in this place. My head is sweating so much, I have to keep wiping it dry. Even a scarf is bad news. But people seem to wear their wigs even when they sleep.

"I thought that too!" says Jenny, who is around my age. "I have been looking and looking at you. You are just beautiful. Isn't it wonderful that you can be so confident."

(There it is again, the You are beautiful thing. She must be joking. Have you seen that picture of me in the Resus Room?)

Jenny has only recently been diagnosed (she is in here for various procedures involving tubes and stents in unusual places). She has amazed me with her ability to keep going and chatting all day, receiving endless visitors and nurses teaching her how to manage her new tubing systems, and paying proper attention to her hair and make-up. Despite the new cancer diagnosis, recent surgery and rather a lot of pain. She is dreading the hair loss that awaits her when she starts her chemo.

I am deeply touched that my baldness has inspired gentle Gladys to free her own head. She, too, looks beautiful, but she doesn't believe me when I tell her this. And strangely, she looks much less ill without her hair. Wigs, good as they are, can just look too healthy and voluminous, highlighting your wan face.

By Tuesday morning, I am still exhausted but no longer incapacitated.

I have sourced the linen trolley and am making my bed. Then I give the nurse a hand with all the other beds in the room as well. I can't just sit there and watch her do it slowly by herself.

The rate this is going, they'd better let me go very soon. It won't be long before I'll be handing out pills and answering call bells. You need the toilet? No problem, let me help you. During my feverish nights, hearing that oh-so-familiar sound of the patient's bells was like being a sleep-deprived parent and hearing someone else's baby cry.  You don't think: I wish that baby would stop crying. You think: Poor parent, but ha! it's not mine to deal with.

But by now, I am remembering why I chose to be a nurse; and of all the hospital wards, this is probably the one where I'd want to work. The patients and families are interesting. So many stories I'd want to listen to.

It does make it hard to be a patient myself, unless (like those recent feverish days or the days following my surgery) I feel very ill. I can't help noting what happens to my fellow patients. I hear the nurse tell Geraldine what pills she needs to take, and it tells me what's wrong with her.

I hear the doctor explain things to Tabiq, and it is clear to me that she doesn't understand a word of it.

More difficult: when my consultant finally comes to see me, and then moves on to Gladys, I understand from the brief explanations behind the curtains that Gladys is really rather ill indeed. I know exactly what is wrong with her, and what her outlook is, but I don't think Gladys does. She doesn't speak Consultant Language, however clear and easy the consultant tries to make her words. I also rather suspect she is blocking out the truth about her cancer.

It's not only people with intellectual disabilities who need help in processing bad news. Perhaps I should re-write my book for the general population?

But that's enough for now.

My consultant doesn't seem overly concerned about my weekend collapse and sends me home.

Will this change the chemo plan? She doesn't know yet, not without looking at all my notes properly. They might decide to change it to weekly chemotherapy, which isn't quite such a large wack in one go. Wait and see until we meet in clinic, pre-chemo, as planned.

In the meantime, Tuesday's blood results have come back. There are now so very few white blood cells left that I should probably start giving them names and introduce them to each other with the suggestion to go forth and multiply. Otherwise, nothing stands between me and even the friendliest of bugs. In fact, those friendly bugs that live in your mouth are already taking advantage, celebrating with a throat full of thrush.

Never mind: just be careful, phone us straight away when you have a temperature again, etc etc.

I hug my fellow patients goodbye, exchange email addressed with Jenny, thank the nurses and leave. I am so, so very grateful to the NHS for coming to my rescue.

Lovely to be home. Wonderful to see the children and talk about school days. Bliss to sink into a hot bath. It wouldn't surprise me if you've heard it, my loud Meg Ryan-esque groans of satisfaction as I sank into my own warm bed underneath my own fluffy duvet. 

Who needs a five star hotel? Home, that's what we need.


*Not their real names

Ready to go home...

...and finally, resting where it's cosy and comfy