I’m generally supposed to be an intelligent man, well educated, well informed and pretty on the ball. How is it then that I can enter the clinic to see the oncologist like that and come out totally confused? How is it that four people can enter and come out having heard four different things? It’s obviously not the oncologist himself because it happens with the other one we see as well. All I can suggest is that we either hear things we want to hear or we all have different perceptions of words used every day. This would at least be an explanation of why a rumour started at one end of a chain of people has totally changed context by the time it reaches the other end of the chain.
Today we had a visit to the oncologist. It was not an expected visit and we’d only been notified earlier this week, As far as we knew the next one was on 7th June. Julia had phoned to see if she could speak to one of the Doctors last week to enquire about her lack of energy. She wasn’t able to speak to anyone at that time so it was possible that this was as a result of that call- we hoped. Not so. Dr.G. had called Julia in as he wanted to ‘catch up’ with her since it’s been Dr.S the last two visits. After asking how she was, Julia explained about the fact that her appetite is poor and sometimes the thought of food makes her nauseous, and also that she lacks energy much of the time. She can get up at 8.am and be asleep again not long after 2.pm before she heads back to bed at 7.pm. Though she watches a bit of TV in bed, I often have to go in and remove her glasses and turn the TV off. If sleeping was an Olympic event Britain has the gold medallist here. Anyway, he prescribed steroids for a week to try and promote an appetite and a little more energy. This is good since Ju is determined to carry on riding.
However, that problem addressed. Dr.G broached the subject of further treatment. Since so far the concensus ( Doctor led) is that it’s better to do nothing unless Ju’s condition starts to deteriorate and it becomes likely the quality of life is diminishing. When I entered the room that didn’t seem the case. Now here’s Dr. G asking if Julia would like to start a tablet form of chemotherapy. Yes there are side effects he tells us, nausea, hair dropping and other things similar to the previous treatment. This time though it would not attack the lungs ( or shouldn’t) but on the other hand, there are extra contra-indications like the nerves in the hands and feet may be affected. Yet he seems to be proposing we consider this treatment despite Julia still feeling reasonably OK and the pain being controlled by the low morphine dose she takes.
I broached the subject that troubled me last time which was the size of the tumour. We know that the scan 6 weeks ago showed it had grown back to the size it was when found last July. But as the previous scan was in January showed it still small following chemotherapy and the April one showed it large, I wondered at what speed it’s growing. My reasoning was that we don’t know when it started growing again. It seems I’m the only one to puzzle about this which is why I say we all hear different things. The Doctor says it started growing straight away and they can’t do scans too often so can’t see where we are now. My daughter seems to agree that is valid. Working on that premise that it took 14 weeks to go from small to large I’m worried what increase there’s been in the last 6 weeks. Yvonne thinks if it’s grown huge Julia would be feeling pain as the tumour would have outgrown the area where the nerves were first cut. I argue that perhaps the mass is growing up like a mountain rather than outwards beyond the bounds of the operation ton cut the nerve ends. I suspect the trouble is that neither of us wants to face too much truth.
It worries me that the Doctor is suggesting taking treatment now after resisting it before. Is it possibly because we’re on 10 months and he said today that few survive the year? Originally you may remember we were told 6-9 months maximum. Julia has defied so many odds so far and is enjoying her life. She loves her riding and is with a particularly good instructor at a great riding school. ( http://www.pennantparkridingcentre.com/ with Carl Crofts and his lovely wife Storm ) and she has our daughter’s wedding in September to look forward to. Is the Doctor expecting the quality of life to take a nosedive now? Anyway, he’s given us ( Given Julia I should say) 4 weeks to think about it before her next appointment but even she is asking why an appointment so soon when they’ve been further apart. In thae car coming home she wanted to talk and I wasn’t helpful. I was determined that Julia shouldn’t accept she’s dying and should just fight on. She says I refuse to accept the truth. She may be right but you see I did promise her a miracle. I swore I wouldn’t let anything bad happen to her and I’m powerless to stop it. I jump at every new miracle cure I see from aspirin to turmeric and hope something will help . Julia is my life and I don’t want to lose her, she’s much too young and has so much ahead of her. She has to stay around if only to handle the pets I tell her, on my own I’ll be bitten to death by them. She just laughs and says I’ll get by.