So here I am, merrily trucking along doing wonderful things and telling anyone who will listen how wonderful life is. And it is pretty wonderful at the moment – my life is a lot of fun.
But then, out of the blue you get a punch in the face. Something comes along to remind you how lucky you are, while simultaneously scaring the shit out of you.
Earlier in the year I was asked by my transplant nurse at The Christie (cancer hospital) to speak to a patient who had exactly the same form of rare Non-Hodgkins Lymphoma as me. Diagnosed 6 months after me, we introduced ourselves and shook hands as fellow ‘Anaplastic Large T-Cell Lymphoma’ sufferers. So rare that only 80 people in the whole of the UK each year have the pleasure of its arrival. We were both members of a very exclusive club.
But whereas I always knew that my cancer had a high relapse rate, and that unless I had high dose chemo and a stem cell transplant after my first six rounds of CHOP chemo (to soften it up), it was likely to return. My fellow T-Cell buddy, who was treated at a different hospital, was told that the first six rounds of CHOP would do the trick. It did for a little while and he was told it had gone. But it came back and after a botched central line insertion which had left him with a collapsed lung, by the time he arrived at The Christie, he was a very sick and very scared man indeed.
My job was to speak to him about having a stem cell transplant and to try and reassure him. He wanted it warts and all.
And there is no way of dressing it up, it was pretty warty - more warty than a warty toad with an extra vile verruca. But before I started to answer his questions, I said ‘Whatever I tell you, look at me now, nearly a year on. Look at how well I am. It’s not pleasant but it’s a means to an end.’
It was really hard to see him there, sitting in the same chair that I sat in a year earlier, going through the same stem cell removal procedure. Four hours each time of blood being taken from one arm – spun – filtered and returned back through the other. This is on the back of having chemo whose job is the ‘encourage’ your body to release stem cells into your blood.
And all the time, you are willing your bone marrow to produce the required number of stem cells for a transplant to take place – when you know that a transplant is your only option.
It’s fair to say it was a bit of a low point for me.
Unlike me, my T-Cell buddy had small children. Unlike me, he lived a good hour’s drive away from The Christie (I live about 15 mins). Unlike me, he had a choice. I never had a choice. I was always going to have a transplant and was always going to hope it would work. Though I knew there was a 60% chance that it wouldn’t.
My T-Cell buddy however did have a choice. Have a transplant, be really, really ill as a result with a 60% chance of it not working and say good bye to any quality time with his wife and young family. With the failure of his previous treatment, he was very sceptical about whether the transplant would work. Alternatively he could refuse a transplant, say goodbye to any chance of recovery, but spend the remainder of his days having quality time with his family.
After we’d finished chatting, I gave him my number and told him to ring me if he had any more questions or needed anything else. He never did.
That was back in February. Yesterday, out of the blue I got a text from his wife. The exchange went like this:
“Hi Alison, It’s SR, we met at the hospital. U came 2 talk to my husband D? I was just thinking about you. I hope you are still well. Have you got married yet? If so hope it all went well. Take care, love S”
I hardly dared to reply, because I knew what was coming. I texted her back to let her know that I was well and that we’d got married as planned at Chester Zoo. I then asked how her husband had got on.
“I am so happy for you both and that’s great news re. results. I’m sorry to say that D died 8 weeks ago this Sunday. He never had the transplant but he was brave and stayed at home till the end with me and the children x”
Holy shit – I should be an expert in all of this, but what do I say to that?
“I’m so sorry to hear that. Cancer is a bastard. It sounds like he was very brave. Big hug. Alison x”
“It is, but it did give us 18 months 2 make sure we said all that needed saying and that he was able 2 make books & DVD’s for the children and grandchildren. 21 years of being 2gether gives u a lot 2 be happy about. U take care and enjoy married life. I know we did x :-)”
In a strange ‘cycle of life’ co-incidence I was just off to the hospital to visit my friend in the maternity unit. As I drove there, it struck me. That’s what I’m doing with this blog. I’m creating my legacy. While proving that I’m doing great stuff with this extra time I’ve been giving and making it count, I’m actually also making my ‘books and DVD’s’ just in case my cancer comes back.
|Baldy Al, struggling a bit, but on a boat 4 months after transplant.|
|Hat had just come off - proudly showing my new hair.|
Usually my blogs are light and frothy - today not so. But if ever I needed a reminder that life is not a rehearsal and to get out there and do it – this was it.