Cancer One Year On: Under Siege

Today is a special day.  It's exactly one year since I went to the doctor to ask about the strange lump in my breast. 

There is so much to celebrate.  It's difficult to remember now how dark things seemed in those early days, when my liver scan suggested a possible metastatis and we worried that I might not live to see this anniversary.   My mastectomy scar has healed up beautifully, chemo is a distant memory and radiotherapy is all done.

And yet....It's not quite the celebration I had anticipated.  It's as if the battle is over but I am still under siege.  For much of the past year I have been in full fighting mode, focusing on getting through one day at a time and kicking Cancer's butt!  I expected to feel awful, so even on my worse days it was just a question of taking one step at a time.

But I suppose I thought that by now - a whole year since this war was declared - things would have gone back to normal.  And, indeed, things are much improved: Cancer is no longer the focus of our family life and I feel much better than I have for a long time.  And yet I still don't feel 'normal' -  my chest is still post-radio-sore, my arm has gone stiff and needs stretching yet again, I am suffering side effects from Tamoxifen that are very mild compared to chemo but I worry that I'll be stuck with them for the next ten years.  I worry generally.  I have tingling in my fingers and I worry about lymphedema.  I feel dizzy and I worry that there is an undetected tumour in my brain.  I worry that I used to be a person who never worried about her health, never went to the doctor, and now I am turning into a hypochondriac.

So that's what I mean when I say I feel under siege - open warfare is over and life has a semblance of normality but the enemy is still camped at the gate.  I can imagine fighting my way through the miseries of surgery, chemo and radio with a brave smile on my face - only to be ground into the dust by the minor, daily discomforts of Tamoxifen.  I can see why the oncologist warned me that this is often the time that women experience a bout of depression.

So - I will not surrender to the darkness camped at the gate.  I will celebrate my new, funky (if still rather short) hairstyle and the fact that I can finally go out bareheaded.  I will stretch my stiff arm and be glad that it has come so far from the days just after the operation when I was sure I would never have full movement again.   I will rest and be gentle with myself when I'm tired and accept that my body has been through a lot, and exercise and push myself when I can because I need strength in my body to face the future.  I am strong.  One year on and I am alive... and that is a lot.

Not Ready to Hang Up my Headscarf

At the weekend I bared my head in public for the first time since last September.

Appropriately, it was for a thank you party in our house for all the people who helped out during my treatment, so it was an easy audience for my new hair.  I got lots of compliments and I've got to admit, all things considered, I am quite happy with the way my hair is coming through.  It's different from the long, sun streaked fair hair I used to have but - having been worried that I would be at least temporarily, totally grey - I'm quietly pleased with my new dark-haired (if shot through with grey) pixie-look.

There's a big difference, however, between sharing my new look with people who are in the know and have seen my metamorphosis all the way through, and people who might think that this close cropped look is the way I actually choose to style my hair.  I mean, it's okay, but the truth is that  I look somewhere between a wannabe arty type and a council estate vandal. 

So I'm not sure I'm ready to face world bareheaded just yet.

And if I'm really honest, there's a deeper fear lurking beneath my headscarf too.  Last summer, losing my hair felt so scary, like I was being forced into a Public Declaration of Sickness ('Look at me in my headscarf - I've got CANCER and might DIE!').  Of course, my super-cool wig saved the day and let me go anonymous when I chose to but increasingly I found that I was more comfortable going out in a headscarf.  I didn't mind that people could see what I was going through any more, in fact it made life easier ('Look at me in my headscarf - I'm Sick so you'd better be nice to me!').  And there's something socially liberating about going through chemo: all you have to do is turn up to things and smile and everyone thinks you are some kind of heroine. ('Look at me in my headscarf - aren't I Brave?').

Am I ready to go back to being just a mum with a dodgy hairstyle??

My friend's mum has glaucoma and is now almost blind and has been issued with a white stick.  The stick is not, however, really to help her find her way around.  Instead it is a signal to others that they need to be patient when she can't read the menu, or struggles to enter her PIN number.  People are much more tolerant with an almost-blind person than they are with a regular old lady.

And I confess, my headscarf has become my white stick.  It reminds people, friends and family as well as strangers, that I still get tired sometimes even though treatment is finished.  It is my signal to the world that my head is still very much in Cancer Patient Mode even if my hair is beginning to suggest that I should be Normal again by now.  I don't feel Normal.  I don't feel ready to be treated as if I am Normal just yet. 

So this morning I cleared up after the party and slipped my headscarf back on to go and do the shopping.

Look at me in my headscarf.

And be patient for a little while longer.

Breast Reconstruction: It's OK To Say No

Now that the active part of my breast cancer treatment is finished and my mastectomy scar has healed, several friends have asked when I will start reconstruction of my breast. 

I shrug and tell them that I will meet the surgeon in due course and explore options.  But I'm not in a hurry because I don't think I will follow that route.  I think I will leave my lopsided, scarred chest exactly the way it is.

I've been surprised by how shocked many people are by this response.  It seems that most of my friends didn't even think about whether I would undergo reconstruction.  They try and reassure me, thinking that I'm either afraid of the surgery itself or worried that the end result will not be what I'd hope.  Give her a bit of time, they seem to be thinking, and then she'll see sense. 

But I've had time to think about this.  Yes, I am afraid that the surgery would be a long and painful process.  Yes, I do worry about the end result because it will never be quite the way was before.  But this isn't just a negative 'I can't face any more procedures' kind of response - even if I could wave a wand and have my old breast back I might have to think about it (I have mixed views about breasts these days).  I completely respect women who decide that reconstruction is for them, but I also worry that society and the medical profession have a tendency to simply assume that reconstruction is just the next, inevitable step in the process of treating cancer. 

From my point of view, I am now as healthy as medicine can make me.  Surgery will not affect my chances of cancer recurring one way or the other and my scar has healed up nicely and doesn't need any medical intervention for health reasons.  So why would I undergo more surgery?

To be comfortable in public?  I can understand that a silicon prosthesis might simply not be a practical solution for larger breasted women: it can be heavy and uncomfortable and it's never going to offer a cleavage.  But for me, an A-cup girl, it works really well.  I have the best fitting bra I have ever had, it's comfortable and gives me a great shape and I never had a cleavage anyway.  I admit that it's a fairly solid bra so it limits evening dress a bit but I can live with that.  Even my swimming costume looks good.

So should I do it for my husband?  Well, maybe if he was seriously disturbed by my new shape and didn't find me attractive any more I'd have to give it more thought.  No doubt, if you ask him, he might confess that he'd prefer my old body.  But we're both getting a bit saggy and baggy and padded round the edges in middle age - I'd rather he still had the body he had ten or twenty years ago too but that's okay.  Our scars and extra baggage are reminders of the life we have shared together and that's not a bad thing.

And what about my kids?  We're pretty relaxed about nakedness in my immediate family so inevitably the kids have walked in on me coming out the shower and seen my new shape.  They've got used to it and don't really care one way or the other.  And I can't help feeling that it is a good message for my pre-teen daughter: yes, my body is not conventional but I'm comfortable in it and that's just fine.

So that just leaves me to strip away everything else and take a good long look at myself at the mirror.  I have to ask honestly, am I really happy with the way I look?  Can I live with the scars or will I always feel uncomfortable, however well I disguise them?  For some of us, the answer will be no.  And to them I say, that's just fine - surgery is, I hear, really great and will result in a shape that you can be proud of and enjoy.  Go for it! 

But for others, like me, we'll think we look just fine the way we are.  I don't mind looking in the mirror and seeing my scar.  More than that, I'm proud of it.  It marks a journey that I have made.  When I look at the space where my breast once was, I don't see that I am less, I am reminded that I have learnt more about what matters in my life and the blessings that I had all along but didn't always recognise.  

When the time comes, I will meet the surgeon, get all the information and make a final decision.  But I doubt she'll change my mind and I'm happy that I'm making a good, positive, informed choice for me.

So don't ask me when I will start reconstruction - ask me whether I will reconstruct.  There are good, positive reasons for either answer.  The most important thing is that society and the medical profession remembers that this is the question that needs to be asked first.

Prescribing exercise?

I am very lucky - I've been treated for my breast cancer by a hospital that takes exercise seriously.  Twice a week, throughout my treatment, I have attended an exercise class with other women in various stages of their breast cancer treatment.  But today I heard that the course might be under threat because the hospital cannot get funding.

That raises the question: Should exercise be provided as part of the prescribed treatment for breast cancer?

The science is certainly there to show that regular exercise reduces the chances of breast cancer recurring.  I have to admit, however, that there is little scientific about the class I attend at hospital: we do some abdominal and weight exercises and use the cardio-vascular machines in exactly the same way as most Bums and Tums classes and workout regimes.  So should the hospital provide something that could be found at any regular gym?

I strongly believe that the answer is 'yes' and it's less about what we do and more about the environment.

First, it is deeply reassuring to have physios overseeing our exercise routine.  I didn't need to have specific appointments with a physio after my mastectomy because I was seeing my physio twice a week at my exercise class anyway.  And she was still there to advise me a couple of months later when the problems with mobility in my left arm resurfaced.  She was there to reassure me that it was fine to take part in the exercise for my arms without worrying about lymphedema and she told me how to keep going when I was in the middle of chemo and just looking at an exercise bike sent my heart rate through the roof.  Now that I have finished the active treatment and headed into a period when it is known that women often suffer from depression- she's still there with her bounce and enthusiasm to encourage me on my way.

Meanwhile, I have also done the journey alongside a good crowd of other women going through the same process: we compare the hair appearing on our bald heads, encourage each other when times get tough and keep each other going when the slog all seems too much.  After all, if they could keep going through chemo, then I knew I could too.

Yes, I could have joined a regular exercise class and doubtless met another great crowd of women.  But would I have been brave enough to take my bald head to a class of gym bunnies with nice hair, to keep turning up when the exhaustion of chemo meant I couldn't really keep up, to try arm exercises when I was terrified of lymphedema or to reveal my lopsided shape under a gym T shirt when my radio-burnt skin meant I couldn't wear a bra?

Probably not.

Whereas now, I am physically more confident, my hair is regrowing, soon I will be able to wear my bra again so no-one will know my curves are not my own and I've even got some muscle in my arms.  I've learnt to love my bi-weekly exercise hit rather than seeing it as a necessity and, when my hospital course comes to an end, signing up for a regular gym will be a priority. 

So, as a result of my relatively inexpensive hospital-organised class, I am much more likely to incorporate regular exercise into my regime which will reduce my chances of having to come back for expensive chemo and radiotherapy treatments by an amazing 25%.

That's got to be a good investment, hasn't it?

Hooray for Coffee!

How I love to start the day with a black, sweet, steaming cup of coffee!

When I was going through chemo, I imposed a fairly strict regime on myself: no alcohol, lots of fruit and veg...and no caffeine.  I still maintain that this totally unscientific approach helped me both physically (if nothing else it meant that I tended to drink more water which seems important when your body is being pumped full of chemicals) but it also gave me a sense of having something I could control at a time when otherwise I had no choice about what was being done to me.

But, the very first morning after my last chemo, I celebrated with a glorious mug of morning coffee.

I felt a little guilty as I slipped back into 'bad' habits but now some nice scientists in Sweden have come up with some wonderful results that mean I should actually be drinking more coffee - ideally two cups every day.  How great is that?  It seems that coffee might make Tamoxifen more effective and can reduce the recurrence of cancers by 50%.  Oh yes, you read that correctly - indulging that caffeine habit alongside your daily pill can actually reduce your chances of getting cancer again by half.

I'm always a bit cynical about these trials - sometimes it seems as if scientists can prove anything if they put their mind to it - but they aren't the first to identify coffee as cancer-fighting: an earlier test in the US linked coffee consumption to a reduction in the incidence of skin cancers.  That's good enough for me.

Time to put the kettle on and breathe in the glorious aroma of cancer-busting coffee.

Radiotherapy Postscript: Still Cooking

It seems that my cheerful assessment that radiotherapy was 'not much worse than a series of X-rays' was a little premature.

Two days after my last radio, I came out in an alarming rash across my chest and the skin felt more fiery than ever. As I had just started applying the cream given to heal the skin, my first thought was that I was reacting to the cream. But I soon noticed that the rash exactly followed the right angles of the box marked out on my chest, despite applying the cream rather less precisely. The hospital confirmed that it was likely to be a late reaction. 

Basically I was still cooking. 

Over the next few days the skin went a deep red colour and, while the skin on my chest calmed down, my armpit became very painful - too painful to sleep on that side. I also had the 'cording' issue return, so when I stretch my arm it hurts and I feel a cord pulling it back like an over tight guitar string under my arm. 

 Meanwhile I had started tamoxifen and begun to notice a mild return to menopausal symptoms: gentle hot flushes and the beginning of the terrible embarrassing itch caused by vaginal dryness. I was lying awake at 3am again thinking, is this a return to endless insomnia?  Is this my future on tamoxifen? And then struggling through tired, uncomfortable days. Post radiation tired? Or hormonal tired?
 
It's now over two weeks since my last radio and first tamoxifen.  The skin on my chest is still an angry, purplish red but it doesn't hurt unless it is rubbed.  The skin under my armpit is black and peeling rather alarmingly but otherwise feels much better. The cording is still there but is responding to exercises, I'm tired but sleeping better and my other tamoxifen side effects have also subsided again...so far.

So overall, I still stand by my earlier post - radiotherapy couldn't have gone better.  Even if I still wasn't quite cooked when I said it.

So How Was Radiotherapy?

It was April Fools' Day but the nurses weren't kidding when they said goodbye - I have reached the end of a long road.  Nine months after my diagnosis at the end of June last year, I completed my last radiotherapy session on April 1st. Nine months?  Was it really so long?  Time has taken on that strange quality when it seems impossible that I have lived under the shadow of cancer for so many months and yet, at the same time, my diagnosis feels a lifetime ago. I have posted rarely during the last few weeks for the simple reason that radiotherapy has bitten deeply into my free time: the hospital was a good 40 minute drive on good traffic days and having daily treatments means the days vanish quickly.  But that was merely a logistical issue.  The radiotherapy itself has been quick, easy and painless.  Every day I arrived at hospital, got my hospital-issue-but- fluffy dressing gown out of my locker (not sure the NHS would give this arriving-at-a-spa feeling, my Europa hospital here in Brussels felt decidedly posh).  Most mornings I had a short wait before being called into a cubical to strip to the waist, put on the dressing gown and continue through to the radiotherapy room itself.  They would prepare the table so that I could take off the dressing gown and lie on my back with my arms up behind my head on supports.  The most difficult part of the process was getting me in position with several staff pushing me a fraction this way and then that while beams of infra-red light bounced weirdly on the lines painted on my chest.  It seemed a millimetre-precise process so, once in position, I had to stay very, very still.  There was a lovely photo of trees lit by sunshine on the ceiling of my radiotherapy room: I am now familiar with pretty much every twig. Not that the zapping bit took that long: everyone else would clear the room and then the machine would move around and make killer-robot-gun noise at me, fortunately entirely painlessly, for around twenty minutes.  Then everyone would bustle back, let the table down and that was that. And side effects?  I saw the radiologist for a last check up this week and he had a long list of questions.  Do you have swollen hands?  No.  Pain in the armpits? No.  Respiratory problems?  No.  Bone pain?  No.  Redness on the skin?  Well, a little bit.  Soreness?  A little sensitivity: as if I have sat in the sun a bit longer than I should.  But dryness, flaking skin, itchiness?  No, none of the above.   It made me realise how many possible side effects there are and how (almost embarrassingly) lightly the radio seems to have affected me. And finally, fatigue?  Like at the end of chemo?  Well, yes, I'm pretty tired.  But bone-draggingly exhausted like back in early Jan when I'd look at the stairs and wonder if I could make it to the top?  No, nothing like that.  And to be completely honest, the few hectic weeks have been decidedly socially hectic so I'm not too surprised to feel tired. My skin is now fragilisé as they say here, so I will need to use lotion on it for the rest of my life and be a bit extra careful with the sun.  But all in all, the radio couldn't have gone better.  Has it worked?  Its purpose is largely preventative so only time will tell - but the doctors are confident that the chance of recurrence is as low as it could be. Next: Tamoxifen. I took my first tablet nervously.  Who knows what side effects the next few weeks will bring? I know that some women find this part really tough.  And others don't.   As always, the scariest thing about cancer treatments is the what ifs...  So all I can do is swallow the pill and be glad that I don't have to drive anywhere and sit in waiting rooms for this part of the treatment. Meanwhile I was rather shocked to walk out of my oncologist's office and realise that I have NO MORE doctor's appointments until my first check up in July!  It feels both liberating and terrifying to be let loose alone in the world without a doctor to hold my hand.  My oncologist recognised the mixed feelings, however.  He warned that the next few months, just when you would expect cancer patients to be wild with joy, can often be a period of depression.  I guess we have to shift from fighting mode, from being the rock-star-status-cancer-victim among our friends, to getting on with normal life again.  If we can remember what normal life looks like. Fortunately my lovely hospital tries to help with this by continuing to offer twice weekly exercise classes, so I get the benefit of exercise (and amazingly I always feel better about everything after a class despite being very non-sporty all my life, what a revelation!) as well as seeing other cancer ladies and not having to wean myself off the comfortingly familiar smell of hospital corridors just yet. Better still, thanks to the classes I am in better physical shape than I was nine months ago when I was diagnosed.  My hair continues to grow - I have a dark, shaven-jailbird hairstyle just now, not quite ready for public viewing yet but getting that way - and my eyebrows (once down to three hairs in total) and eyelashes (which went entirely) are nearly back to normal.   And I'm sitting peacefully at my computer with a cup of coffee without having to rush to get out the door for my next appointment.  I don't know what cocktail of emotions will hit me over the weeks to come but right this moment, life feels good.