Haven't been able to blog since last Saturday evening when a 'nice young man' parked his Nova in a neighbour's hedge back and demolished the telegraph pole. Not only did it knock out the land line and Internet, it also affected my iPhone, such a pain.
Anyway, to update, I went to the Nuffield for the results of my CT scan on Tuesday and everything looks normal. It would appear that my suspicions have been right all along and my bowel problems are due to spasm or IBS, exacerbated by anxiety. One source of anxiety is travelling to a site with poor toilet facilities. So, I've been prescribed Loperamide to take the night before I have to travel and I'll take Merbentyl 3 times daily. It's hoped that with the medication, things will gradually settle back to normal.
Interestingly the Consultant did not think I should stop having the Herceptin and still maintains the view that it is not responsible for my bowel problem.
Friday, 26 February 2010
Friday, 19 February 2010
Thurs. 18th Feb. 2009 'Herceptin No.14'
Busy day today - had a routine Oncology appt. at York District this morning. After the last one I wasn't expecting much, and I wasn't disappointed. It was the same Oncologist as I saw in October, but he did have a nurse observing, which in my experience always makes them raise their game a little. He was quite obviously aware that I'd chosen to see my own Oncologist privately and dismissed my recent tests with a smugness.
Once again he suggested that I could stop the Herceptin treatment and I think I caught him off guard when I asked how this would affect my prognosis, as my understanding is that the full 18 infusions should be completed. He said there is research available to suggest that only 9 treatments could be beneficial? Could be, might be.... well, the problem is Herceptin is still in it's infancy and not much is really known regarding it's effectiveness, or it's side effects yet.
He asked me if I had any other problems - ha, that's a laugh. I said "yes, numerous, but nothing I feel I can discuss here as these appointments are obviously time limited". So basically a waste of a morning, his only concession being that he'll see me again in four months.
On the way home I decided I might just finish the Herceptin, but I think that was because I was cross and just wanted to finish treatment and get on with life. However, I discussed it with the nurse who came to do my Herceptin, and she confirmed what I was already thinking and advised me to finish the course.
It took four attempts to find a decent vein today, but it still wasn't as traumatic as my CT experience. Speaking of which, I mailed a letter to the Patient Liaison Services yesterday and received an acknowledgement within two hours, so it does work.
Once again he suggested that I could stop the Herceptin treatment and I think I caught him off guard when I asked how this would affect my prognosis, as my understanding is that the full 18 infusions should be completed. He said there is research available to suggest that only 9 treatments could be beneficial? Could be, might be.... well, the problem is Herceptin is still in it's infancy and not much is really known regarding it's effectiveness, or it's side effects yet.
He asked me if I had any other problems - ha, that's a laugh. I said "yes, numerous, but nothing I feel I can discuss here as these appointments are obviously time limited". So basically a waste of a morning, his only concession being that he'll see me again in four months.
On the way home I decided I might just finish the Herceptin, but I think that was because I was cross and just wanted to finish treatment and get on with life. However, I discussed it with the nurse who came to do my Herceptin, and she confirmed what I was already thinking and advised me to finish the course.
It took four attempts to find a decent vein today, but it still wasn't as traumatic as my CT experience. Speaking of which, I mailed a letter to the Patient Liaison Services yesterday and received an acknowledgement within two hours, so it does work.
Friday, 12 February 2010
Fri. 12th Feb. 2010 'CT Scan of horror'
I've been so moved by all the prayers and good wishes as a result of my recent blog entries - they were all passed on and I thank everyone on behalf of Lisa, James & of course baby Isaac who was laid to rest this morning.
CT Scan - YDH. Drank 1000mls of "Klean Prep' which tastes like a mixture of ice-cream that's gone off, mixed with paint thinner (not that I've tried paint thinner). Once on the scanner table I was subjected to several very distressing attempts to site a cannula. The last attempt, which was carried out by the 'unit Doctor', was frankly the most incompetent, ham fisted, painful attempt I have had to go through since this whole damn thing started. I think I nearly broke the nurses fingers and felt like planting my knee in this so called Doctors private bits.
Why are they so poor at this, they must have to do it quite often and I'm definitely not the first person with post chemotherapy invisible vein syndrome! Anyway, the upshot was that they gave up, so I had a 'lesser' scan than I should have, which won't be quite as effective at picking up any problems. Well tough, 'cos I ain't going back for another!
CT Scan - YDH. Drank 1000mls of "Klean Prep' which tastes like a mixture of ice-cream that's gone off, mixed with paint thinner (not that I've tried paint thinner). Once on the scanner table I was subjected to several very distressing attempts to site a cannula. The last attempt, which was carried out by the 'unit Doctor', was frankly the most incompetent, ham fisted, painful attempt I have had to go through since this whole damn thing started. I think I nearly broke the nurses fingers and felt like planting my knee in this so called Doctors private bits.
Why are they so poor at this, they must have to do it quite often and I'm definitely not the first person with post chemotherapy invisible vein syndrome! Anyway, the upshot was that they gave up, so I had a 'lesser' scan than I should have, which won't be quite as effective at picking up any problems. Well tough, 'cos I ain't going back for another!
Saturday, 6 February 2010
Frid 5th Feb. 2010 'Rest in Peace baby Isaac'
This entry is purely in memory of baby Isaac Hodge, who's life has been too brief. Brave James and Lisa agreed on the basis of medical advice to removing his life support this afternoon and spending a few short but special hours with him at home before he slipped peacefully away. It is impossible for us to even imagine what they have been through and how heartbreaking it must have been to say goodbye.
God Bless baby Isaac, it was so good to meet you. X
Thursday, 4 February 2010
Thurs. 4th Feb. 2010 'Prayer for Baby Isaac'
This blog has always been a diary of my journey through the nightmare of cancer diagnosis, treatment and, fingers crossed, full recovery. From time to time however, there are moments or events which impact greatly on life in general and result in quiet contemplation.
The birth of little Isaac on Monday 1st was one such moment. Isaac is the first Grandchild on Graham's side of the family and we were all really excited. Sadly he needed to be ventilated from birth due to an oxygen/metabolic problem and he remains very poorly.
We went to see him today, tiny helpless, sedated and hooked up to various tubes and wires. Mum and Dad (James & Lisa) are devastated, but doing their best to be strong. They have now discovered that he has an AVM (anterior venous malformation I think), which in simple terms means he has an enlarged vein in his brain. It felt so unfair and there's little you can say to make it better for anyone. I did however avoid telling them to 'stay positive'!
Hang on in there little man!
As for me, I've received my appointment for a CT scan - next Friday 12th.
The birth of little Isaac on Monday 1st was one such moment. Isaac is the first Grandchild on Graham's side of the family and we were all really excited. Sadly he needed to be ventilated from birth due to an oxygen/metabolic problem and he remains very poorly.
We went to see him today, tiny helpless, sedated and hooked up to various tubes and wires. Mum and Dad (James & Lisa) are devastated, but doing their best to be strong. They have now discovered that he has an AVM (anterior venous malformation I think), which in simple terms means he has an enlarged vein in his brain. It felt so unfair and there's little you can say to make it better for anyone. I did however avoid telling them to 'stay positive'!
Hang on in there little man!
As for me, I've received my appointment for a CT scan - next Friday 12th.
Tues. 2nd Feb. 2010 'Here we go again'
Had a lovely weekend with family and friends, ate well and felt good. This morning was just about to set off for Middlesbrough when oh oh, the familiar aching. I had people to see at the site, so I did eventually get going having taken a peppermint capsule. I got about two thirds of the way when the gripes came back and I struggled for the rest of the journey.
Middlesbrough, unlike alot of my sites, has a reasonable toilet facility, but just my luck the bloody thing wouldn't flush, so I had to discreetly use a mop bucket to clear it. I then sat through a consultation, which frankly would have been worthy of an Oscar on my part. I was in agony and felt that any moment I would have to run out, but I managed to get through it. I did the necessary paperwork and then left for home, desperate to curl up with a warm drink.
I'm due at the Brinsworth site tomorrow, so hopefully I'll feel rested.
Middlesbrough, unlike alot of my sites, has a reasonable toilet facility, but just my luck the bloody thing wouldn't flush, so I had to discreetly use a mop bucket to clear it. I then sat through a consultation, which frankly would have been worthy of an Oscar on my part. I was in agony and felt that any moment I would have to run out, but I managed to get through it. I did the necessary paperwork and then left for home, desperate to curl up with a warm drink.
I'm due at the Brinsworth site tomorrow, so hopefully I'll feel rested.
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