Tuesday, 28 September 2010

What was it all for?

28th September.

I had a great Saturday. Attended the London School of Painting and Drawing in Kensington, such a good class. I have been going there since it began about ten years ago. They have a life class once a month, with two models in natural and artificial light. When I got home I carried on painting till about 9pm then I noticed a red ring right round my middle, and itching under my arms and down my shoulder blades. It went on growing from there, a terrible rash, which spread all over, up the back of my head, behind my ears, but not on my face.

I was scared and had a night of Lord Peter Whimsey and other crime and sci-fi hours which all blurred into one.

On Sunday I could not go to church as I was covered in Calomine lotion and would have looked like a zombie. As usual in this day and age, I looked myself up on the internet and saw under side effects of chemo, a rash that covers the body and spares the face. Something called, macupapular which can strike at any time during the post-chemo cycle.

Feeling anxious I rang the oncology dept at Hammersmith, some how the word “oncology” doesn’t really seem to apply to me. No one answers. Try Charing Cross and get a friendly doctor who says it is a reaction to the Steroids. He suggests I go in to the A & E.

Decide not to go in as I would almost rather die than spend Sunday sitting in an A & E department, and I do not have a temperature so it can’t be that bad.

Spent the day feeling listless and lost, longing for company. The shock of it and realising that for once I had nothing much in the fridge made me feel lonely. A friend called at my request, dropping off some washing up liquid and a she added a box of chocolate ├ęclairs. She didn’t ring the bell though, as she thought I was asleep.

Living alone certainly has its down; the art class, I hadn’t been there since April, before the start of all this. I was uncertain whether anyone would greet me or say anything about my bald head. They were friendly but I wasn’t sure. As a single person I am always like a college fresher, out to meet new exciting people, always waiting, hoping for a good response but always uncertain.

Felt very gloomy by tea time but got on with some painting. I’ve set up a still life tying to make objects and ordinary things suggest unease, they probably will without my trying.

Tuesday it’s Garry for my last blood test before my last chemo. I hardly dare say it, I hope so much never to see the place again but feel I can’t really be that lucky. This feeling stops me being really happy that the thing is nearly over.

The clinic has become part of my little world, a tiny Ambridge full of gossip and human feelings. It's my lucky day, for the first time there is only one other person there waiting. Anne has been chatting to the Singaporean phlebotomist, who says he is Spanish. Apparently he has been in the job since January and before that he was in catering – in a restaurant.

Well now he gets to swank about in a white coat, touching up the nurses. In the narrow corridor between the doctors’ rooms and the nurse station see him put his hand on a nurse’s back and let it lie there until she shrugs it off, not looking up from her sheet of notes.

Ask to see a doctor, I didn’t have to, but I am looking for reassurance since the last one said that as my cancer was “aggressive” it was more likely to come back than a non aggressive one.

See a doctor I haven’t seen before, two other people, probably students are sitting in. The atmosphere is jovial, even skittish. When I tell him about the rash he laughs says it must have been caused by fruit juice. He says it would only have appeared right after my last treatment not a few weeks later.

He also says that statistically ovarian cancer is almost certain to come back within two years.

“There are only about two to four percent of patients where this doesn’t happen," he said, as if this would cause no reaction in me.

"With that level of disease, it is very doubtful that we can have found all the microscopic cancer cells out and removed them," he went on cheerfully.

I remembered a letter passed to my doctor saying that the disease was "well contained within the ovary" and had not spread. They had removed all the cancer, and my blood test was down from fifteen to ten, totally normal. But his words struck me such a blow that I couldn't keep hold of this information against his.

As I went out he said, “Fingers crossed,” with a cheerful grin.

Walking out of the hospital, up the tunnel which leads from the north side, feel I want to burst into tears, but can’t as it is too embarrassing. Desperate to get home again but there is the long wait for the bus.

On the way back, go over it, this way and that. He said most people with stage 4 ovarian cancer have a nodule in the diaphragm, up by the navel, I didn’t have that. Nothing has gone to my vital organs, my blood is clear, everything was well contained, but he said, “It is unlikely that we have removed all the microscopic cancer cells. Only a small percentage don't come back.”

I have to live with this, this waiting for it to come back when I have to start living with it as part of my life, the "chronic condition" they talked about when I was in hospital. It feels like an overwhelming nightmare and I am right back to the first time I went down that passage in tears, thinking, not me, why me?


  1. hi Jayne

    So sorry to hear about your adverse reaction to the drugs, Robin has had problems of side effects with most of the drugs he is on. For him sadly the issue is that they cannot give him any more radiotherapy for his brain tumours and chemo is ineffective. On the up side his head is not troubling him for now, though he finds the side effects of the morphine disconcerting. As for his spinal tumour, this is causing him enormous pain and mobility issues over the last few days, a real retrograde step unfortunately, though he can have more radio and possibly chemo for that so it is not the end of treatment; we do however have to wait for a scan and the results until we know for sure what the prognosis is. All we can do for now is try to manage his pain relief to make it as effective as possible, the local hospice staff have been of invaluable help with this, if it wasn't for them I am not sure how he or for that matter I would have coped.

    I will keep my fingers crossed for you that the final lot of chemo has worked well for you and pushes your cancer into remission for some considerable time.


  2. Is there no chance it can now go away forever?

  3. There is always a chance in fact there is a 1 in 2 chance as you found out from Loretta Oliver, so here is hoping.

    We are waiting for the next scan to see what next - they have upped his morphine again, unfortunately a little too high I think as he now has occasional hallucinations - very disconcerting for him. But if we lower the dose then the pain from his spinal tumour isn't controlled adequately. It is a bit of a juggling act at the moment.

    He is also getting very frustrated as he keeps comparing how is now to how he was before he was diagnosed with the mets and that upsets him, no matter how much I reassure him that he is better than or no worse than yesterday etc.