This is Me - Going Out

This is me, getting ready for an evening out with friends.

Wig no longer an option as getting too itchy but hair no-where near public scrutiny.  So choose headscarf to go with my nice green dress.

Put on nice green dress.  Realise nice green dress does not look so nice over white cotton T shirt that radiologist insist that I wear next to skin during radiotherapy.  Look through stuff and find black vest top that will not show and is also 100% cotton.  But not white!  Radiologist specified white!!  What will BLACK do to my vulnerable skin???? Decide that this is ridiculous and put on black vest top with nice green dress on top.  Readjust headscarf which is now attractively over one ear showing lots of stubble on other side.

Look in mirror.  Nice green dress is too figure hugging and shows lopsided shape of chest area (cannot wear bra and prosthesis during radiotherapy).  Experiment with pretty scarf around neck to hide flat bit.  Realise that pretty scarf around neck + headscarf = fortune telling gypsy look.  Do not want to spend evening reading people's palms.  Take off pretty scarf.  Experiment with pinning onto black vest the fake cushion boob provided by hospital after operation.  One boob now weirdly high, the other depressingly saggy.  Lovely.  Not.  Plus weirdly high boob fairly obviously....well... a cushion.

Take off nice green dress and headscarf and start over.

Eventually find baggyish top worn over black vest with re-pinned cushion boob and matching headscarf.  All in purple shades so also matches the purple lines drawn on my chest for radiotherapy that show around collarbone.  Look obsessively coordinated.

Drawn in eyebrows and paint liquid eyeliner on top eyelid to compensate for absent lashes.  Realise I haven't used liquid eyeliner since I was teenager.  Look like I have two black eyes.  Can't tell I'm lashless though ;).  Wash off and try again.

Hallelujah!  I am ready to go out.  End up arriving late because husband was not ready.  Seriously???

Radiotherapy: Getting my Tattoos

If I told a psychiatrist that I had dreamt that I was lying naked while two young men drew purple patterns across my chest, he would probably tell me I had all sorts of issues.

This was not, however, a dream.  Just the start of radiotherapy.

I had the first preparatory session on Monday.  A nice young doctor showed me into a cabin and told me to strip to the waist (why do they always give you privacy for this when you are going to be naked and manhandled for the next half an hour anyway?).  Then I had to lie on my back on a machine with my arms up behind my head.  It wasn't the most comfortable of positions, a fact which became increasingly obvious over the next twenty minutes while they told me repeatedly that I MUST NOT MOVE.  At all.  Not even an twitchy little bit.  That's the cue for the nose to start itching but I was soon distracted as things got increasingly surreal.  After the machine had whirred around for a bit, the two young men arrived with their pencils and one stood on each side of me, drawing patterns on my skin with deep concentration.  That was quite soothing, but then the tattoo guy arrived and pricked spots across my chest which was not so great.

Apparently these lines and dots are to help them put me in exactly the same position every time I go for treatment.  At the moment it looks to me as if some very drunk people have been trying to play noughts and crosses on my chest though my daughter thought, rather more poetically, that they had covered me with stars. The lines will eventually fade though the tattooed dots will remain.  I have therefore ticked off one of the things that appears on many bucket lists of Things To Do Before Turning Fifty: I have my tattoos.  It's a kind of Join-The-Dots tattoo.  Perhaps I should turn them into tiny flowers?  But no, it hurt!

Thanks to a little miracle, it hasn't been a problem driving to the hospital.  After last time, when we got stuck in their full, claustrophobically small, underground car park, I was nervous about driving in every day.  But then a friend asked what help I needed during radio.  Jokingly I told her that I needed only one thing - a parking spot at the hospital.  Okay, she replied without missing a beat.  It turns out that her daughter's boyfriend lives opposite the hospital and I am now armed with the code that allows me to park in his compound - incredible!   Another friend explored the tram option with me and (after getting a bit lost in the Bois de la Cambre) I now also know how to get the tram and walk across the park so I have another option for the spring-like days that will undoubtedly arrive any day now.

My second preparatory session today resulted in a few more lines and the conclusion that everything is set for the actual treatment so I am ready to go tomorrow.  I will look  a little lopsided for a few weeks as I am not allowed to wear my bra and prosthesis under the cotton T shirts that I must wear every day and I am no longer allowed to use soap or deodorant so I might smell a bit as well.  But nothing can be as bad as chemo so I am feeling quite jaunty about this next adventure.  Just six weeks and the invasive treatment will all be over.  

Don't Fall in the Nocebo Trap!

I read a fascinating article today about the 'nocebo effect' - the thought that can make you sick.

We've all heard about the placebo effect: the positive results that a simple sugar pill can have if the patient taking the pill believes that they are taking medicine that can make them better.  The nocebo effect is the opposite: the power of the brain to make us feel ill if we believe that we will be ill. 

The brain has an astonishingly powerful effect on our physical state.  In many trials in which placebos have been used, not only have patients receiving the placebo reported positive effects in the belief that they are being treated, but many have also reported experiencing the negative side effects of the real medicine even though they are only taking sugar pills.  And we're not just talking about people convincing themselves that they feel nauseous: patients have also developed rashes, skin complaints and even shown elevated liver enzymes just because they expect to redevelop these physical symptoms.

Yes, that's right, patients have developed measurable physical conditions simply because they expect those conditions to develop.

That's a really important realisation for those of us on chemotherapy.  When we start our regimes, we know that we face a possible raft of side effects.  It's important to know about those side effects so that we can prepare ourselves.  And yet, what if that knowledge is actually making side effects more likely?

I don't mean to belittle the very real side effects that we experience on chemotherapy.  Of course the chemical cocktail does genuinely have an impact on our bodies.  Even if the side effects are the result of a nocebo effect, they are nonetheless very real.   But if we recognise the power of our brains over our physical symptoms, both for good and for ill, can we harness that power to help us cope better?

It's easy to see how the nocebo effect can suck us in.  It happened to me when I convinced myself that I was ill because my white blood cell count was low.  I had, in fact, been obliged to postpone chemo several times for this reason and had felt weak and low each time.  On this occasion, I remember sitting in the waiting room at the hospital feeling awful again, waiting for my blood test result and being quite convinced that my white blood cells were low again.  I was utterly miserable because it meant cancelling a week away with my family to accommodate my new schedule but there was no doubt in my mind that I was in no fit state for chemo.  Half an hour later, I had seen the doctor and been told that my white blood cell count was (inexplicably) massively higher and I would be able to go ahead as planned.  Suddenly I felt dramatically better.  Not just less miserable, but physically better.  And yet, nothing had actually changed.

On better days, I managed more successfully to harness the positive power.

Last summer, before I started chemo, I was lucky enough to stay in a beautiful mill by a stream in sunny Portugal.  Every day, I stood on a stone in the middle of the stream to do my post-mastectomy exercises.  Looking at the glorious view and soaking in the sunshine, I told myself over and over that I was strong.  In that wonderful place, I felt strong, as if I was a battery being recharged by the sunshine and tranquility. 

Later, when I was struggling with chemotherapy through the dark winter months, I tried to put myself back in that place.  I remembered the warmth of the stone beneath my feet, the gurgle of the water dancing in the stream, the smell of the summer flowers.  And I told myself over and over that I was strong.

Did it help?  I think it did.  Did it mean that I didn't suffer side effects?  Of course not.  But I'm sure that I suffered less than I would have done otherwise.

 When we go through chemo, we are out of control for months at a time, pumped full of chemicals with long lists of side effects and seemingly helpless in the face of it all.  So it is perhaps an important reminder that we carry within our brains the power to make things better.... or worse. 

Getting it right doesn't mean we will sail through symptom-free, nor does it mean that we are not being positive enough if we feel really rotten.  But it does remind us to avoid the trap of making ourselves ill simply because we expect to be ill - and it arms us with a powerful weapon to fight to be as well as we can reasonably expect to be.

Finished Chemo and Having Fun

If I've been quiet on the blog recently it's for the best of reasons: I've been too busy having fun.

What a joy to have a few treatment-free, needle-free weeks to spend having long lunches and day trips!  And I am finally really feeling better.  I have a lot more energy: the limb-dragging fatigue has gone and now I just have the sleepiness that comes when you are finally sleeping at night again.  My embarrassing itch bothers me much less, as do the hot flushes which come less often and more mildly. 

It's easy to forget how far I've come: yesterday I knelt down and realised that I felt no pain at all.  Just a week or two ago, I couldn't kneel without intense pain down my thighs.

But there is always some two-steps-forwards-one-step-back.  My left arm - where I had the lymph nodes removed- has been stiff and sore again .  Apparently this is normal, my physio described it as something like fibrosis of the lymphatic system.  I have a new exercise which involves hanging onto the top of a door or high shelf and twisting: I'm finding lots of places that have never been dusted but it's working.

I have a new discomfort too, though this is rather more positive: my wig has become itchy and uncomfortable because my hair is growing.  But the new growth is so short, fine and white that I still look completely bald, so it's headscarf time.  I think my eyebrows might be coming back a little too, tiny fair hairs have appeared between the old, black ones.

Another couple of weeks and I will start radiotherapy.  This worries me a lot less than the chemo did, somehow I'd rather be zapped than hooked up to chemicals.  Besides, when you have slogged through five months of chemo, a mere six weeks of treatment doesn't seem that bad even if it is every day. 

The thing that was worrying me the most was (of all things) the parking at the hospital.  With my enormous car, the prospect of navigating the tiny basement car park and hoping for a space big enough to manoeuvre into every day was much more terrifying than being zapped.  But I have now had a little miracle.  A friend asked me what I needed during radio and I jokingly replied: a parking space.  And she has found me one!  Her daughter's boyfriend lives right opposite the hospital and has parking that I can use. 

So that's the logistics sorted, now I have another ten days to enjoy having fun before the treatment starts again.

Why Do I Need Radiotherapy?

One step at a time: that's been my philosophy for getting through my cancer treatment.  My doctors have wisely taken the same approach, giving me just enough information to get through each stage without overloading me with information.

But now that the mastectomy and chemo are over, it is finally time to turn my attention to radiotherapy.  I have been prescribed 25 sessions, so that means going to hospital every week day for five weeks plus an initial week with two preparatory appointment.  That's when they will decide how I will be positioned and mark me with small tattoos so that they can recreate that position exactly for each session.

Last week I met my radiologist and I had various questions for him, starting with - why do I need radiotherapy at all?  After all, the operation removed my entire breast and the infected lymph nodes, then the chemo supposedly killed off any cancer cells that had escaped in my body.  Hormone therapy should hopefully prevent any new cancers, so what is the point of radiotherapy?

First, he explained the criteria for prescribing radiotherapy.  If my tumour had been small and contained in the breast, then the mastectomy would have been enough.  But if the cancer is also in the lymph nodes (yup) or there is more than one tumour (yup) or there is one tumour larger than 5cm (my two tumours had joined to create one 5cm monster so I guess that's another yes) - then radiotherapy is prescribed.

That's because surgery cannot reach all the problem areas.  A mastectomy cannot remove absolutely all breast tissue and there are lymph nodes in places that would be too invasive to reach with a knife.   And in theory chemo should take care of anything left behind by surgery but in practice it isn't 100% effective, particularly around the breast area, possibly because the surgery removes the routes the chemicals need to travel.

So, where will I need radiotherapy?  They will blast areas where localised cancer cells might still be lurking i.e. the chest wall and the lymph nodes hidden behind the sternum and the clavicle.  And finally they will blast the armpit where first-level nodes have already been removed but, unlike surgery, the radiotherapy will be able to reach the second or third level.

If I wasn't yet convinced, the statistics helped me see that it is worth making the trip to hospital every day for six weeks.  Without radiotherapy, there's a 15% chance of localised recurrence.  Radiotherapy reduces that to only 2% after a lumpectomy.  For me, post mastectomy, radiotherapy will reduce my chance to 1%.  Those are odds I like.

And how does radiotherapy work? They will blast me with high energy x-rays in small doses that will break down the DNA in all cells.  Healthy cells have a repair mechanism so will have repaired themselves before the next session.  But abnormal cells and cancer cells don't have this ability, so will be unable to reproduce and will die by the end of the 25 sessions. 

That sounded like a good result but not much fun for my healthy cells.  So my next question was - Won't it hurt?  My radiologist promised that I will feel no pain during the sessions and, in fact, will have no side effects at all until the last couple of weeks.  By then I may get some dryness and redness on the skin but no burning (large breasted women can burn where the skin folds but, as I have had a mastectomy, I should be fine).  There might also be some fatigue towards the end...but not as bad as chemo-exhaustion.

Well okay, but shouldn't I buy some protective creams?  He almost rolled his eyes at this one, clearly he despairs of the advice people receive.  Ignore what everyone says, he pleaded, don't use cream or oils, soap or deodorant.  Just wash with water.  To keep yourself comfortable, avoid wearing your bra or prosthesis if possible and wear white cotton T shirts next to the skin.  I have, of course, been advised to buy a 'wonder cream' that a friend (who survived radiotherapy unscathed) swears by.  I'm hesitating...but I think I'll stick with my radiologist's advice for now.

Finally he explained that I should have four weeks recovery time between the end of chemo and the start of radiotherapy.   But my last question was, can I wait a couple of weeks longer?  You see, I told him, the kids have a week's holiday and I really don't want to come to hospital every day when they are not at school...  He agreed, though the gap couldn't be any longer.  So now we can go on a family holiday during the break and get a week's rest and relaxation before the next phase starts. 

One step at a time.