I have to apologise in advance (and, it seems, retrospectively) for the strain of slightly sick humour that runs through these blogs; I blame it all on my family, as my father started it and it was more than ably continued by my brothers, so you could say it is in my genes. That’s my excuse and I’m sticking to it, but it does serve its purpose. There are particular situations where humour is a very necessary release from unbearable tension. For instance, some 20 years ago we were gathered at our parents’ house. Our Mum had died three weeks previously and our Dad wanted to have a little family service in the garden to plant a rose bush in her honour. Unfortunately he was taken ill very shortly afterwards and then died at home of a heart attack the following day. We were all clustered downstairs waiting for the undertaker to come (the same one who had handled our Mum’s funeral) not really sure what to do with ourselves as we were all very much in shock. One of my brothers suddenly said, “You could say that to lose one parent is unfortunate, but to lose both could be construed as carelessness”. After a second to take in the enormity of the words, we burst out laughing and that really broke the ice. There were loads of sick jokes after that – like asking the undertaker if he could give us a discount for bulk purchase, ditto the florist….it goes on. Sick, but you need it. You can’t carry on at such a pitch without something giving.
I had a moment like that yesterday. We had a pre-Stem Cell Transplant appointment with my (wonderful) consultant which was, to put it frankly, incredibly depressing. He needed to go through all the drugs I will be given during the six days of intensive chemo and their possible side effects. Don’t we love that one? The good old litigation lawyers have made it so you have to be told absolutely every single thing about the treatment so you can’t then sue the NHS if there are ‘complications’. And I hate them for it. It is bad enough that I have to go through all this without having all the negative side effects (and I have enough of a struggle with those anyway, as you know) written out in full; the process can’t help but eat away at the careful cloak of positivity that months of hard work and introspection have wrapped around me for protection. (Why a cloak? Because underneath I confess to feeling scared and vulnerable. But having it protects me while I grow strong.) Liver damage? Yep, no problem. Kidney failure resulting in the need for dialysis? Absolutely! Sepsis (blood poisoning) leading to life threatening conditions – need Intensive Care for that one. Of course! Wondered what the food was like up there anyway! Heart failure which might result in a stay in the Cardiac Unit? Bring it on. Having read through all the information and listened closely while it was all explained, I was then shown the dotted line on which to sign. And then it happened. My (lovely) consultant knows me by now so he started chuckling as soon as the words were out of my mouth. “This is it – I really am signing my life away, literally, like never before, aren’t I? Signing a mortgage form has absolutely nothing on this!” And it is true. The whole thing about consent forms is ridiculous. I have been in Ward 10, busily having bloods taken or whatever, while other people have been given their chemo. When a new patient comes in the nurse giving the treatment has to read through all the side effects and get the patient to sign the form, just as I did. Only some of these patients are not the full ticket due to their age, and also probably because by their appearance they have been round the chemo wheel several times already and are back in with yet another relapse. I saw a lovely old guy, completely deaf, being prepared for his treatment. The nurse had the form ready. “I just need to go through the side effects with you so you can sign the form, then we can get going”. Blank look. “I just need to go through the side effects with you so you can sign the form, then we can get going“. Still blank. “I NEED TO READ YOU SOMETHING SO YOU CAN SIGN THE FORM“. A flicker of understanding. “THIS DRUG MIGHT MAKE YOU SICK“. He nods. “IT COULD ALSO GIVE YOU HEART FAILURE“. He nods. “AND YOUR KIDNEYS MIGHT FAIL“. He nods. “CAN YOU SIGN THE FORM NOW?” He nods and smiles and duly signs. “NO PROBLEM, LOVE“. Did he understand? Possibly not. Are the NHS and Big Pharma off the hook? Absolutely.
I had assumed that my appointment yesterday was going to be a really quick “see you next Tuesday” affair, but there were reams of paperwork to complete and a whole battery of tests to be done before I go in. This battery of tests should have been done during the last week but a ‘communication breakdown’ meant that none of the requests were filled and I wasn’t called to any appointments. So far from having some hospital-free time until the stem cell transplant I am more than adequately having every day filled by round robin visits to most of the hospital departments. We had to leave our appointment mid-stream to go up for a heart trace. Some hurried phone calls from the assisting nurse had resulted in “please go up now they are waiting for you”, which was probably a blessing for the posse of patients outside still waiting for their appointment. We returned some minutes later clutching the resulting printout, jumped the queue and duly received the paperwork for more blood tests and a chest x-ray, all of which I did today. I also saw my (chuckling) consultant again so I could sign another form to waive all the rights to my poor body. He was in a reflective mood today. Yesterday’s meeting was sort of manic and there were a lot of people in the room. Him, me, Stephen, student nurse, stem cell transplant organiser, so there was a lot of laughter and the opportunity to fool around for an audience. More bad humour to relieve the tension.
Today was different, just him and me. I signed his form with a sigh and passed it back. He was very thoughtful. He said, really gently, that if there was another option he would use it. He said that in the circumstances the risks were very much outweighed by the benefits. He also pointed out that the benefit and objective of all this is to achieve a long term remission, not a cure. Gulp. I knew that, I just hated him for saying it, but of course he had to. Then he said that when I have been in remission for ten years he will call it a cure, all with a big smile on his face. This man really knows how to get inside my head.
On Thursday I am going for a lung function test which sounds exciting as I have never had one of those. I am hoping that the years of yoga and meditation and watching the breath will have paid off and that they will discover I have splendid and enviable lung function. I think I am free until the transplant then, which will be nice. There is just a teeny shadow on the horizon of an otherwise very sunny day. My blood tests show that my platelets aren’t recovering very fast and they have to be at a certain level before the transplant can go ahead. He isn’t sure why that is. I am taking folic acid to hurry the process along and will also be eating an awful lot of lamb’s liver before I go in, but if the platelets are still low on Tuesday I will have to have a bone marrow biopsy to find out why. This is an incredibly painful procedure which I really do not want. I don’t want it because it hurts, but I also don’t want it because I don’t want there to be anything wrong that we don’t already know about. Any spare moments you have to send healing thoughts with this in mind would be very welcome.
And tomorrow? There has been no mention of tomorrow. This is because our wonderful friend Crispin has offered us his beach hut for the day and we’re not going anywhere near the hospital. SO happy. Except that I only found out yesterday that I can’t sit in the sun (after a whole weekend of sitting in the garden!) because my skin is extra photosensitive due to the chemo. And I won’t be able to sit in it for another six months, so there goes the cruise…. :-(. But every cloud has a silver lining – at least I will be able to sit by the beach, all tucked up in the shade, just relaxing and reading some seriously good chick lit. Which is about all my brain can cope with just now.
Big hugs to you all,