Beautiful orchids from Irish friend Addie - my brother from another mother. My sista from another mista. I couldn't believe it when this decoration suddenly appeared at my door. Well, no. Trust her to send us flowers.
Sometimes people ask me in disbelief why there is nothing that can be done to cure my husband's brain tumour. They are adamant there must be something - "why don't you just insist upon another operation to remove it?" "Why don't you demand that new medicine they've been researching in Sweden? I've read that others are getting it!" "Don't listen to the doctors, question them, challenge them!" This is all directed at me.
The other day I had to go through his entire illness with two of his best friends - the diagnosis confirmed to us after surgery in October 2013, the prognosis, the type of tumour. It surprised me that they hadn't caught on to it all before, but perhaps there's a sort of denial involved here.
My husband's brain tumour is called Glioblastoma, one of the most aggressively malignant cancer tumours there is. It occurs only in the brain and has not spread from any other part of the body. Medical research has not yet been able to reveal the cause. It's not hereditary, it has nothing to to with lifestyle or diet. It can hit anyone, but is most common in men between the ages of 50 and 70, less common in women. It is basically a rare disease. The average survival from the day of diagnosis - with radiation and chemotherapy treatment - is 12 to 15 months, without any treatment it is 4-5 months.
Today - February 1st - we count 15 months and 21 days since my husband's surgery.
Surgery involves removing as much of the tumour as possible and then keeping development stable with treatments, but sooner or later it will start to regrow. The doctor at the post-op meeting described it as an octopus with tentacles that wind their way into all parts of the brain. This is what has happened to my husband now. The tentacles have now attacked the visual cortex and have made him blind. The tumour, which is on the right side of the brain, pushes his brain leftwards and thereby paralyses the left side of his body - his mouth droops that way, his arm is useless, and he can't walk properly with his left leg, but drags it behind him.
This week everything took a turn for the worse. I can't believe how quickly changes appear now. Saturday a week ago we were at a friend's house for dinner, this Saturday we couldn't have made it.
The eye specialist we saw on Tuesday merely said: "There is no more functionality in your eyes. The pupil activity is gone." Then on Wednesday was the monthly appointment at the radiation hospital, to decide on a new round of chemotherapy. The doctor said: "No more chemo. It's useless and might do more harm than good at this point."
I made a praying gesture behind my husband's back - PLEASE. I saw my husband's disappointment, and he said: "What will I set my hopes on now?" Hope is important - until the very last. Even if it's mixed with an element of denial.
So the tall dark handsome doctor - who looks like he comes straight out of a hospital TV series - said: "Ok. Another round of chemo it is."
At the end of the session with Dr Clooney and the lovely nurse Julia I mentioned that my daughters had been on to me about getting some help. Another stay in a Hospice, home carers and nurses. I have refused up until now - perceived it as a bit of an interference really. How can they manage better than me?
Oh wow. My remark started a landslide.
The doctor said to me: "You are unique. I have never seen anything like it. You do the work of a team of nurses." To my husband he said: "Your wife is one in a million. Anyone else would have sent you to a home, or a hospice, or had nurses in - a long time ago. And your family! Those daughters of yours. You must have done something right!"
I bet Dr Clooney says that to all the girls.
We keep receiving aid stuff from the municipal office. I call this our stripper pole. My husband wonders if he's meant to put on a show, especially considering we have no curtains yet. (It's supposed to be grabbed so that he can raise himself out of bed).
Well. On arriving home I simply sat down alone - and whimpered. For a few minutes. Then I rang everyone there is to ring - Hospice, home nurses, the lot.
End of story - the nurse has been here Friday, Saturday, today. And she's coming now, in just a few minutes. This was long overdue.
I need to let go. I need to give up my huge sense of responsibility and control. I need to learn to receive help.
Perhaps now my husband and I can be a couple again. Now that I don't need to be his nurse 80 per cent of my time and the nasty girlfriend the remaining 20.
Granddaughters have stayed for three days. Getting up at 6.30 and driving them to school… well, I deserve a medal for that….
Driving them to school in darkness and picking them up in almost darkness at 4.15 pm. But we're getting there - the days are longer now.
Beautiful porcelain candle holder and old fashioned candy (also known as Dr Clooney's Remedies) for my husband, from brother Harald and sister-in-law Tone when they visited the other day
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