Still Counting Blessings Despite Everything

I wrote my last post yesterday, saying innocently that I was looking forward to a couple of days of doing summer-fun things with my kids while I still feel well, before I head into treatment.  Life seems, however, determined to test us.

In the last five months, my two children have broken two arms and one leg between them.  Last night, my daughter added yet another arm to this miserable tally.  It was a bad break, her arm was weirdly bent.  We rushed her up to hospital (St Luc's, the very place I have spent far too much time recently doing tests and where I will spend most of next week for my surgery), and the doctor gently told us that she needed a general anaesthetic so that they could realign her bones.  As ever, the care was outstanding and I was able to stay with her when she was eventually checked in at 4.30am for the rest of the night.  So I got to use my newly-purchased Hospital Pyjamas unexpectedly early.

It's not the end of the world, the arm will heal.  But there will be no amusement park for us this weekend before the operation, and it won't be so easy to rest and recuperate post-op on  holiday.  The cast is enormous and heavy and I expect I will have to contend with a hot, miserable child when she would normally be spending hours playing in the pool or scrambling in the woods.  I'm exhausted after a sleepless night and overwhelmed with everything and I want to scream about the unfairness of it all.

I can deal with the Cancer if only Life would stop throwing all this other crap at us.  I am so unutterably fed up with trying to look on the positive side of things and count my blessings!

I was proud of her though.  As we left today, she said tearfully,  "At least we've still got the most important thing," she said.  "We've still got each other."

Perhaps it's only when we are really tested that we properly appreciate our greatest blessings.

Preparing for the Mastectomy

I spent today preparing for my mastectomy.

Step one: shopping.  A quick Google search suggests that I won't easily be able to put T shirt tops over my head after the op.  So that was a great excuse to go shopping for some cute button-up-the-front shirts, loose enough to disguise the flatness.  I also found a couple of dresses which naturally puff out above the waist so I'm hoping that should disguise a fair amount.  I have no idea what I will do about bras at this point - I haven't really got time to worry about it so will have to figure that out afterwards.

I had a moment of feeling sorry for myself, but I had to laugh when my dear husband flicked his eyes over me and pointed out, in the nicest possible way, that I'm not actually going to be parting with  much.  Then he held me and told me that I would still be beautiful and he would love me with just one boob.  Which, given I had just told him I wouldn't love him any more if he gets fat again, was quite sweet really.

Step two: packing.  I bought new pyjamas with a button up top as well as a zip-up robe to take to hospital with me.  And some new underwear (I'm so fed up of going for tests and realising my knickers have holes in them).  My friend advised packing disinfecting wet wipes for hygiene and sunglasses in case you feel rubbish and the light is just too bright.  I've put some relaxing music on my phone and put in the eye mask and inflatable pillow that another friend gave me as a get-well gift.  These two friends have more experience of time in hospital than anyone should ever have so I am prepared to take their advice seriously.

Step three: photos.  Yup, I want a photographic record of my boobs.  Unfortunately, the only friend I might have asked to do this for me is on the other side of the Atlantic.  So I did my best with delayed shots and the camera balanced on the top of a suitcase.  The results aren't going to win any prizes but, in sepia, they don't look so bad.  And actually, when I look, my husband is right.  There's not much to lose.

So now I have a couple of days to enjoy being with the family before my body gets screwed up by medical procedures for the foreseeable.   I'm planning a trip to an amusement park.  I want to do a real roller coaster for once.

One Sunny Day

It's a glorious day.  The daily, cold rain that drenched me on every visit to the hospital last week has vanished like a dream.  All day, I've been in and out of the sunshine in the garden, playing with the kids and generally lazing.  I'd looked forward to having lots of these days over the summer but now I'm just grateful to have one.

One sunny day with no tests hanging over me, no grabbing the phone to see if it's the hospital calling, with my body still whole and seemingly well before surgery and not a single drug yet poisoning my system.

How ironic that right now, when I am sick with a deadly disease, I feel so well and so healthy.  By this time next week, I will have had the mastectomy.  At that point, I might be cured and yet I probably have months ahead when this kind of health and energy will seem a distant memory.  The Cancer will never have made me sick, it's the treatment that will steal my wellbeing.

I'm at the top of a roller coaster ride, the moment when the plunge ahead is horribly visible but the car pauses, just for a second, and everything is unbearably peaceful.  I'm high above the world and it's sunny up here.

Hormone therapy (Tamoxifen)

I promised another post on hormone therapy.

Perhaps one of the most shocking outcomes of yesterday's results session, is that I'm almost certainly going to be advised to take a pill every day for the next ten years.  Ten years!  So forget 'getting through this and going on as if it never happened by Christmas'.

 

And yet I'm also told that this is a good thing because, luckily, my Cancer has hormone receptors. 

The doctor explained it like this.  Imagine the hormone receptor is an antenna on the Cancer cells.  Normally, oestrogen attaches to this antenna and tells the Cancer cell to divide and so the Cancer spreads.  But hormone therapy, in the form of Tamoxifen, mimics oestrogen and attaches even more easily to this antenna.  Then, instead of telling the cell to divide, it blocks the oestrogen and clings on until the cell eventually dies.

So they recommend taking Tamoxifen for a minimum of five years to prevent the Cancer coming back.  That's all that will be reimbursed under the Belgian medical system, but trials have shown that taking it for ten years increases its effectiveness still further.  It doesn't cost a fortune, so it makes sense to pay to keep going for the full ten years.

Of course, there's a downside to all this jolly good news.  Tamoxifen does not have as many side effects as chemo, a quick Google search tells me.  Thank goodness for that!  But common side effects include hot flashes and night sweats.  So it's a bit like menopause at age 43.  Great.  Less common side effects include blood clots, cancer of the uterus, cataracts and stroke.  Oh, what fun!

I'm not going to worry about this yet.  It's far down the road ahead.  But I'm beginning to realise that this journey is going to be a long one.

Mastectomy and then into the unknown

Be careful what you wish for.

In a previous post, I weighed the difficult choice between taking the chemo path in order to shrink the tumour before a lumpectomy versus simply having a mastectomy.  I have also been heard to say that I hoped I wouldn't have to make a difficult decision.

So here is what they told me: I'm booked in for a mastectomy in a week's time and I'll probably need chemo afterwards and possibly radiotherapy too.  Hooray!  No difficult choices after all.  I'm going to have a fake boob AND fake hair!

It seems that there is some confusion about my lymph nodes.  The last agonising aspiration produced lots of fluid and when they tested it...they did find Cancer cells.  The shock of hearing that made my face burn, it sounds like my Cancer decided to go travelling after all.

But nothing is ever as clear as you'd like it to be in the world of medicine (which, of course, could turn out to be a good thing so I suppose I should be grateful).  They didn't actually find any lymph cells in this fluid.  So it could be from some weird ectopic breast material or glandular fluid (depending on which doctor you listen to) and not from my lymph nodes at all, which still look quite normal.  The only way to find out is to operate, remove one and test it.

And so, to the operation.  They have a three stage grading system for tumours: below 2cm, between 2cm and 5cm, and over 5cm.  Mine is weighing in at a hefty 5cm at the moment but it's only a best guess.  Lobular cancer mimics the shape of the breast rather than forming a hard lump like ductal cancer, so it's difficult to see the tumour even on the MRI.  It might turn out to be bigger.  Or some of the material might actually be pre-cancerous and the tumour itself might be smaller. 

But they all agree on one thing - the tumour is large and it's been there a while.  As the doctors candidly, but politely, pointed out, the tumour may be large but my breast is not.  A lumpectomy will leave me with a miniscule, misshapen breast that will be difficult to reconstruct so the surgeon said with a shrug, mastectomy is better.  Reconstruction of a small breast is easy, she said lightly, so I'll get a better cosmetic result in the end.  Not so easy, I suspect, but that's another bridge for another day.

I'd mentally prepared myself for a mastectomy so I took the news without weeping for my poor breast.  In a way, I'll be glad to be rid of this treacherous breast tissue in case it betrays me a second time.  What shocked me was that it might not be enough.

I might still need chemo.

Of course, if it's in the lymph nodes, then I will need the works: radiotherapy to blast it in location and then chemo to deal with any drifting cells left wandering in my system.

But even if it's NOT in my lymph nodes, I'm still likely to need chemo because there's a risk that a large tumour will have found a way to send cells wandering out of the breast.  I hadn't understood that.  I thought clear lymph nodes meant a clear body.  Unfortunately not.  At least in this scenario I won't need radiotherapy because they will only have found Cancer in my breast and...there won't be any breast left to blast.

I had hoped that results day would set out the path to follow.  But it only took us to the next junction: mastectomy and more waiting for results.  From there, I might be sent down the roughest path through the jungle of radiotherapy, chemotherapy and hormone treatment.  We'll just have to wait and see.

Oh yes. Hormone therapy. I'm going to need that too, but I think I'll cover that in another post because if you are anything like me, you head is probably spinning by now.

Yes, I'm spinning but I'm holding up alright for the moment.  I admit to leaking a few tears in the doctor's surgery when they told me mastectomy plus probable chemo.  But there is such a relief in getting on with it all that it's giving me strength to keep smiling and counting my many blessings

In one week's time, they will cut this killer from my body and I then I've just got to do whatever it takes to make sure I am here to enjoy my blessings for many years to come.