For those of you who know me, you’ll know I’m a big fan of the Wonderful Big Bang Theory. If any of you also like it enough not to miss an episode ( even when repeated for the umpteenth time) the phrase above will be familiar. Leonard I’m sick ! At which point Leonard is on his way out of the front door dragging on his trousers at 6am on a Sunday morning. When Sheldon gets no response o his plea he rings Leonard who claims to be in work on an emergency call.
Well poor Julia is having a Leonard week and she couldn’t even get out of the front door without being seen by me. Not that she’s renowned for being up at 6 am and not that she’s famous for hearing my calls anyway.
This has been coming on a week. Constant coughing with me swearing I’ll be able to shake it off usually leading to a trip to the doctors and very often a little holiday in hospital. This year I was determined, no docs, no hospitals. I didn’t do a Sheldon by inviting everyone to comment on the colour of my phlegm. Mossy green looked close enough. Monday I went out for a while with Ju’s sister and her husband with whom I’m very close and heard all the comments about looking white, looking pasty and looking below par as well as “Isn’t this chocolate Indulgence drink fantastic.” I was glad to get home. My breathing was getting worse and the constant coughing exacerbated that.
Yesterday was meant to be a very short trip out to collect something but I couldn’t manage it. Last night I went to bed about 10pm and slept till two when I was wide awake coughing. I answered messages on the computer till 5 am then went back to bed till 8.30 which is quite a lot for me. In between coughs I tried to giggle as I rang the bell Ju had left me with in case I needed her. Perhaps she didn’t hear it because it said ring for peace and quiet. If only they sold one that said ring for Armageddon. She didn’t hear me so I swung myself out of bed and went to wake her, give the girls their morning treat and put the kettle on. I just laid her tea on the table as she arrived to get the girls out for a play. I took my meds and ambled back to my bedroom to check the mail.
Very oddly I found myself nodding off over my keyboard, of course I didn’t realise it until I actually woke with a start and realised I’d no idea what message I was dealing with, whether I was answering them with balderdash or just deleting them. It all seemed such an effort. I really felt so odd ( yes, other than my usual self thank you Oz) I had to lie down and the next thing it’s 11.30 am and Ju’s asking me what I want for lunch. Because of the knife in her hand I forebore to mention I hadn’t even had breakfast. Anyway we lunched and in order to satisfy the diet tabs I had egg toasties. Almost straight afterwards I must have fallen asleep. Ju gave me a gentle shake at 1.15 pm to say she was going to her riding. Hugs were exchanges as were I love you’s and she left. I saw a little news and decided to come back to my mail for another go. I was doing really well and had cleared it by just gone 3.00 and thought the afternoon film at 3.15 appealed. I turned on and promptly fell asleep though of course I denied it when Ju walked in about 3 40 pm. I made her a cuppa and settled to the film again. Viewed though my eyelids it was quite different. That over I was fine between 4.45 and 6.oo for part of an antique show and a quiz. By that time Ju was ready to relax in comfort in bed and I came through here again to catch my messages. I’m going to urn in soon because I feel tired, my breathing is atrocious and the coughing is annoying me. In honesty I’d go out and leave it if I could,
So, if any of you hear a plaintive little cry of ‘I’m sick’ tomorrow morning, it’s not Sheldon so you’re safe. It’s me, get over here with the chicken soup and brow soothers as soon as possible.
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.
Yesterday we returned to the hospital to see the oncologist and get the results of the scan Julia had back in March. Our daughter and nieces accompanied us again but that was probably in the hopes of seeing Dr. Drop Dead Gorgeous. They were to be disappointed since we saw the lady from our last visit. Though she is honest in where we stand she always tries to temper that with some enthusiastically given ‘Good News’.
Today we were told that the tumour has grown back to the size it was when Julia was first diagnosed and before the chemotherapy shrunk it so much. This was said with the speed of a machine gun spitting out bullets so that it had just hit home when the speech slowed slightly for the good news. “But” she said ” it hasn’t spread to any other organ, and since you’re not currently uncomfortable ( in pain), and you’re currently trying to live as normal a life as possible, we’ve decided to continue on the path of no treatment. To offer something now could exacerbate the growth and reduce your quality of life. We need to reserve treatment for a time when you start to feel the effects of the tumour again.”
Everyone seemed delighted with the news that the other organs were currently clear and that no treatment was currently needed. I held myself in check asking just a couple of questions, the main one of which was to see if chemotherapy could be restarted at a lower dose of the gemcitobene if needed as the other treatment option is to take tablets daily which have only a 10% success rate. The prevaricating answer is that they could look at the option. I thought Julia was happy with the news too until we got home. She told me she’s scared that the tumour is back at the size it is and she worries now if she’ll survive to see our daughter married or if she’ll hold a grandchild of that wonderful union. I did all I could to stay positive and remind her she’s still riding and relatively pain free.
My own worries though aren’t so easily dispersed since I’m wondering if the scan was six weeks ago, how much growth has there been since then? Will it grow beyond the limits of the splanchnicectomy and cause the pain to return which can only be controlled with large doses of morphine ? I don’t even know how fast the growth is. It could have started growing slowly in December when the chemotherapy stopped and taken till March to reach this size, or it may have only started growing a week before the scan and got to this size quickly. This again leaves me wondering where we are size-wise now.
We return to the hospital in 6 weeks unless Julia feels any discomfort in which case we go back straight away. But, if we manage the six weeks I shall feel I have to ask for a new scan to give me a better idea of how we stand. I will worry though that Julia and the girls will see this as a sign of desperation on my part and start to feel the same way. At the moment all I can do is hope Julia continues to enjoy the horse riding and doesn’t start to feel enough discomfort to lessen her quality of life.
Friday addendum. It seems I was wrong as Julia has told me today how upset she is that the tumour has grown back to it’s previous size. She’s wondering now if this is the beginning of the end. Staying upbeat and keeping her positive is that little bit harder now. But, as I pointed out, great strides are being made every day and by next Friday she could be cured and driving me to drink.