Has it really been more than a month since I last posted here? I know I said that "no news is good news" but several followers commented that they would like to continue receiving news about how I am getting on. So here's an update.
Today we made the return trip to Carlisle to keep an appointment with the oncologist. We learned nothing new. He asked how I was, I told him I was feeling fine considering, so we received a new appointment to see him in three months' time.
In truth, I'm feeling better than I have at any time since the treatment of my brain tumour began. In fact there are times when I completely forget that I'm ill at all, never mind have a terminal illness.
I'm not back to my original fitness though. I tire more easily than I did before and I don't think I could climb much of a hill, though I'm starting to venture further afield. I still get bouts of vertigo that make me sometimes nearly lose my balance when I am walking, and cause me to use both hands on both rails when coming down the stairs.
I have lost most of the excess weight I had gained whilst I was on steroids: I'm down to 91kg now and I had been over 100kg. That makes me feel better too. I still have the goal of getting down to 89 kilos which was what I was BT (before tumour.)
The one thing that disappointed us is that I was not given a date for a new MRI scan. The doctor said that as I'm not having headaches, vomiting or seizures and am feeling fine there is no reason to have a scan. But I'd prefer it if we could keep an eye on things. A glioblastoma multiforme grade 4 is considered incurable. So I believe that there is still some tumour left and expect that one day it will grow back again. I'd rather find out when this happens before I start experiencing headaches, fits and vomiting.
I don't really want to live with a time bomb in my head and have no idea what the fuse is set for.
7 July - Losing weight
I think this blog is reaching the point at which no news should be assumed to mean good news. The treatment to hold back my incurable brain tumour has been completed and we are now in "wait and see" mode. I think we would all get bored of daily or weekly updates just to say "hello, I'm still here."
My weight, which has caused me some consternation as it topped 100kg, is now down to 94.4kg and decreasing at a rate of a couple of hundred grams a day (sorry, I gave up pounds and stones several years ago.) To what extent this is due to the diuretic tablets proscribed by our GP, or giving up cakes and desserts I don't know. but while it continues to work I'm sticking at it. Moving around is now a lot more comfortable and I can once again see the bones in my feet.
I still have to overcome one problem which has plagued me ever since the treatment started and that is my loss of balance and the vertiginous feeling when I have to descend stairs. Our GP warned that there may not be anything that can be done about that. I hope it will just wear off. Until it does I won't feel confident enough to leave behind my walking stick or go out without Olga's reassuring presence.
Olga and I have been discussing what improvements we can make to our home to make things easier for me when my mobility becomes limited (as it almost certainly will judging by the experiences of other brain tumour victims.) We had a meeting with a lady from Social Services who told us they can fit a rail on the opposite side of the stairs of the stairs so I can descend hanging on with both hands, which will help with my vertigo. They also offer such things as raised toilet seats to make it easier to get off the pot, and can loan us a lift to help getting in and out of the bath. That would prevent potentially embarrassing incidents such as occurred a month ago when I couldn't get out of the bath.
That's all for now and hopefully for a while or at least until I experience major improvements in my fitness.
My weight, which has caused me some consternation as it topped 100kg, is now down to 94.4kg and decreasing at a rate of a couple of hundred grams a day (sorry, I gave up pounds and stones several years ago.) To what extent this is due to the diuretic tablets proscribed by our GP, or giving up cakes and desserts I don't know. but while it continues to work I'm sticking at it. Moving around is now a lot more comfortable and I can once again see the bones in my feet.
I still have to overcome one problem which has plagued me ever since the treatment started and that is my loss of balance and the vertiginous feeling when I have to descend stairs. Our GP warned that there may not be anything that can be done about that. I hope it will just wear off. Until it does I won't feel confident enough to leave behind my walking stick or go out without Olga's reassuring presence.
Olga and I have been discussing what improvements we can make to our home to make things easier for me when my mobility becomes limited (as it almost certainly will judging by the experiences of other brain tumour victims.) We had a meeting with a lady from Social Services who told us they can fit a rail on the opposite side of the stairs of the stairs so I can descend hanging on with both hands, which will help with my vertigo. They also offer such things as raised toilet seats to make it easier to get off the pot, and can loan us a lift to help getting in and out of the bath. That would prevent potentially embarrassing incidents such as occurred a month ago when I couldn't get out of the bath.
That's all for now and hopefully for a while or at least until I experience major improvements in my fitness.
26 June - One year on
Another milestone passed. This is the day the doctors said I would never see. One year ago today a doctor broke the news that I had a brain tumour, that it was incurable, and that I could expect to survive "a few months to a year."
Today we went to Newcastle, to the Royal Victoria Infirmary where I had the brain surgery, and saw the same doctor, one year later. As I anticipated, we didn't learn anything new. It was a rubber stamp exercise to put "closed" on my case as far as the surgery goes. (Carlisle will continue monitoring the tumour, of course.) It was uplifting to see the looks of genuine surprise as the doctor read through my file and saw the reports of how well I have done.
So, five hours of travelling for a five minute consultation. But I'm not going to grumble. They did a good job.If they hadn't, I really might not be here at this moment.
Today we went to Newcastle, to the Royal Victoria Infirmary where I had the brain surgery, and saw the same doctor, one year later. As I anticipated, we didn't learn anything new. It was a rubber stamp exercise to put "closed" on my case as far as the surgery goes. (Carlisle will continue monitoring the tumour, of course.) It was uplifting to see the looks of genuine surprise as the doctor read through my file and saw the reports of how well I have done.
So, five hours of travelling for a five minute consultation. But I'm not going to grumble. They did a good job.If they hadn't, I really might not be here at this moment.
20 June - Cold turkey
Finished the course of medication for the shingles. I haven't noticed any reduction of the rash but there don't appear to be any new blisters. Fingers crossed.
In the meantime Olga has been doing some research into why I have been feeling so lousy since giving up the steroids. She found that after effects of coming off dexamethazone - such as stiff and aching joints and muscles, loss of appetite, weight gain and tiredness - are a common complaint on cancer forums. Some people have been unable to give up the drug at all.
The best way to give up dexamethasone seems to be to decrement the dose by microscopic amounts such as a quarter of a tablet every few days so that the body doesn't notice. We were told by my oncologist to reduce the dose from 2mg to 1/2mg in just a few weeks which appears to be just too fast, so I've been suffering from "cold turkey" withdrawal symptoms.
We have just managed to get my weight down below 100 kilos. By sticking rigidly to a small helpings, no snacks, no cakes or desserts rule it seems to be going down by an average 100g a day. If I can keep this up then hopefully I'll eventually start to notice a difference.
In the meantime Olga has been doing some research into why I have been feeling so lousy since giving up the steroids. She found that after effects of coming off dexamethazone - such as stiff and aching joints and muscles, loss of appetite, weight gain and tiredness - are a common complaint on cancer forums. Some people have been unable to give up the drug at all.
The best way to give up dexamethasone seems to be to decrement the dose by microscopic amounts such as a quarter of a tablet every few days so that the body doesn't notice. We were told by my oncologist to reduce the dose from 2mg to 1/2mg in just a few weeks which appears to be just too fast, so I've been suffering from "cold turkey" withdrawal symptoms.
We have just managed to get my weight down below 100 kilos. By sticking rigidly to a small helpings, no snacks, no cakes or desserts rule it seems to be going down by an average 100g a day. If I can keep this up then hopefully I'll eventually start to notice a difference.
12 June - Shingles!
If it isn't one thing it's another. Just when I was hoping to feel better after the cancer treatment I get shingles.
A couple of days ago Olga noticed a rash on my body. I didn't notice or feel anything so we didn't do anything about it. Last night it was worse and Olga applied some Spilanthes to the affected areas. This morning the rash wasn't any better. Olga consulted Dr. Google and told me that I probably had a type of herpes commonly known as shingles.
Olga managed to get me an appointment with a GP straight away, which was more than I could achieve (I play John le Mesurier to Olga's Hattie Jacques.) The GP confirmed our diagnosis, issued us with a prescription for some antiviral tablets.
Apparently, shingles is related to chicken pox and people who have not had chicken pox could catch the virus from me. So I have been warned to stay away from pregnant mothers, babies and small children, something that will cause me no pain at all. Shingles can also cause aching muscles and a general feeling of tiredness, which explains a lot about how I've been feeling lately. The virus is dormant in the body and probably appeared because my immune system had been compromised by the chemotherapy.
A couple of days ago Olga noticed a rash on my body. I didn't notice or feel anything so we didn't do anything about it. Last night it was worse and Olga applied some Spilanthes to the affected areas. This morning the rash wasn't any better. Olga consulted Dr. Google and told me that I probably had a type of herpes commonly known as shingles.
Olga managed to get me an appointment with a GP straight away, which was more than I could achieve (I play John le Mesurier to Olga's Hattie Jacques.) The GP confirmed our diagnosis, issued us with a prescription for some antiviral tablets.
Apparently, shingles is related to chicken pox and people who have not had chicken pox could catch the virus from me. So I have been warned to stay away from pregnant mothers, babies and small children, something that will cause me no pain at all. Shingles can also cause aching muscles and a general feeling of tiredness, which explains a lot about how I've been feeling lately. The virus is dormant in the body and probably appeared because my immune system had been compromised by the chemotherapy.
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