Well, it’s been a couple of weeks now since I’ve been out of hospital, having been admitted early in the new year. I’ve been keeping my promise of resting more by way of staying off the computer a bit, though not sleeping more as a ‘good’ night is between two and three hours and a bad night just over one. Being off the computer seems to have aided the daytime napping a bit, though I’d love to know why it happens during programmes I enjoy watching and not during the times the TV is on for background noise only. Have I annoyed another of the gods apart from Somnos. Anyway, I realise that I’ve been remiss with the photo sharing so this week I decided to make up for it.
The family New Year’s eve 2017, also Amelie’s birthday.
My brother Dil and his newest grandson Elliot.
Adding a picture of Dil was something I um’d and ah’d about since I don’t normally allow mention of his name in this house if he’s been cheating at cards. By cheating I mean winning of course and by winning I mean against me. Wednesday this week was totally awful. Yahtzee was going quite well up to round 6, we were 3 apiece but typically he had to spoil things by going 4-2 in the next 6. I’m sure he casts a spell on the dice somehow. I did enliven the halfway mark of the evening by going A over T when I caught my foot on the edge of a chair. I fell forward and bounced off a display cupboard which wobbled and sent three heavy glass heads of Buddha hurtling to the ground. At this point hat’s where I was, flat on my back. One bounced off my kneecap the other two bounced on the laminate and were fine. He who shall not be named returned from the loo in time to help me up which meant I had to stop calling him names for a while. Nomination whist and Cribbage both fell to his cheating ways leaving me sad and lonely once I’d thrown him out and locked the door behind him. I was hoping for rain on the way to the car. Not that I’m a bad loser you understand.
I’ve had two visits this week, one from the podiatrist who was really pleased at the condition of my feet. Though she can’t tell if the cellulitis is on it’s way back. She clipped my toenails and said she’s see me in about 3 months. The other visit was from MuJo, the first since before Christmas when my health was so bad I wasn’t able to much for Christmas for them. I was able to make it up to them this week with a few extras I’d been able to buy. One of which for John was one of the globes I’d mentioned at Christmas which floats electromagnetically between the two points of what looks like a large letter C. He loves it but then he always enjoys novelties. They both liked their other gifts including their Christmas gift from Yvonne which I’d been trusted with. She’s have done better delivering it herself.
Saturday was reached without troubles. But the cracks in my week started appearing as I tried to convince Mike it really was a new day and that he should get out of his bed and meet it. In the end I told him his coffee was on his chairside table. I left an electric fan pushing the aroma of fresh coffee i his direction and returned to my emails. He did get up eventually muttering something about the middle of the night. We were a little later than our usual 7.00 am leaving the house. Shopping was easy-peasy and we stopped for breakfast at our second supermarket. I had my second breakfast of the morning, the first having been at 3.00 am. After all the usual stops and home to put away the frozen food we thought of lunch. It turned out we were wrong about the date of our Dragon’s Rest Cafe reopening. We ended up going to Abakhan Fabrics Mill. I had a baked potato with beans, Mike had some kind of spiced pork with rice. No real complaint about the quality of the food but it was just £2 less than a full carvery lunch for the two of us. In the afternoon Mike shaved and disappeared to take a lady friend to a birthday meal, see, the man could eat for Britain as an Olympic event.
Sunday……. I actually slept until almost 4.30 am and went through to take my meds and have some toast for breakfast. Maybe it’s as a result of sleeping so much but I woke up feeling very sad today. There is a real weight on my young shoulders (shut it you lot, no need for all that laughter. It’s unseemly.) I don’t suppose the situation has been helped recently by taking my nighttime tablets in the morning and vice versa due to laying them out in the wrong pots. I got Mike up about 8.30 am to go to what turned out to be a very disappointing sale, make note of this, I bought nothing. After lunch at the Cookhouse we went to a supermarket and I still bought nothing. This confusion with the tablets might be good for the savings (ha ha) but it’s sending my reputation as a serial shopper downhill.
I wish you all a very happy new week filled with Hugs.
I’ve found myself being rather quiet recently. Conversation isn’t coming easily as I don’t much feel like being flippant. But in life, things have a way of catching you out don’t they? After the shock of last week I’d placed an advert on a degu site asking for a home for the three degu girls. I realised that it would be impossible for Julia to cope when I brought her home. As I’m quite allergic to them ( and the rats) there’s not much I could do either when it came to cleaning. But lets face it, I’m a man and never realise when things need cleaning anyway. I’d also added to the advert that I had the rats too and if anyone was interested………. All I’d specified was that I wanted someone fairly local so that we could keep an eye if needed and they didn’t have far to travel.
Unexpectedly I got an immediate answer and had messaged the young man who replied. Julia had been home a few hours when I mentioned the degus would have to go, I was pleased when she agreed (reluctantly) which was just as well because he arrived. Within half an hour the degus had gone and I was sure it was to a good home. While he was here he saw the girls and said ” About your mention of the rats in the advert. I’d like them too.” I saw Ju’s face change and begin to crumple. As I went through to my room to get something she followed and tearfully asked that the girls not go just yet. What could I do? But, as luck would have it, he’d come in a car and the girl’s cage is quite a good size and would not slide into the car upright. I couldn’t let him take the cage on it’s back as the girls would be standing on wire rather than their solid base. After explaining that Ju was reluctant to say goodbye to them just yet I pointed out that they’d be safe and still here for him later. He left with that promise.
Since then, Ju has risen every morning without fuss to play with them before they go to bed. As she’s usually the one to open the cage while I make her a cuppa, the routine goes like this.
Priya will run straight for Ju’s dressing gown sleeve.
Bernie will go straight for the opening at the neck and wander down to her waist. Sometimes Ju sits down on the settee then until they emerge again. Then it’s up to the cage.
Penny will climb out onto the top of the cage and then onto Ju’s shoulder while Amy will tuck herself into one of the tubes they sleep in and wait to be lifted out. I will deliver Ju’s cuppa and then go back to take my meds. That done I have to pour myself a bowl of cereal because of the diabetes ( at least that’s the excuse) and go sit on the settee. Bernie will have been sitting on the arm in anticipation of my arrival. I have to give them each a shreddie on my spoon and they run off to hide and eat them. I daren’t take a mouthful yet as it’s not long before they return. Bernie first for her second one which suffices followed by Amy, Priya and Penny in quick succession and only after they’ve taken their third one can I carry on.
Ju uses this interval to take her tablets and a drop of her tea. My part in the performance is usually over in five minutes and it’s play time for a while with them raiding pockets for tissues to play tug of war with or running in and out of dressing gowns. There’s a blanket over the back of the settee and they love crawling under it. Eventually I’m off duty and Ju takes over again as the drinks lady.
Here’s Priya with a cup of tea.
For the not too squeamish, here’s Penny getting her breakfast the cheeky way.
Me fighting for food with Penny.
There are some very distinctive styles of drinking. Penny will always cup the liquid in her hand and bring it to her mouth like a gentile lady. Bernie’s quite happy just to stick her nose straight in. Priya on the other hand tries both as if she’s unsure what she should do. Amy is always on guard so she’ll pass it from hand to mouth too. Then usually she’s straight up on her back legs to check for danger in the air. maybe she expects the Red Baron to appear.
Half an hour is about as much as Ju can take of playtime now but I’m so pleased she still shows the same interest. The biggest surprise for me is her determination to maintain the riding. So, on Wednesday afternoon we’re off to see if she can actually cope. We can only attend the RDA stables as they’ve got a mechanical hoist to get riders to horse level. Great news on the charity front though as our friends at a local cafe have a giant teddy bear they’re going to raffle off for Pennant Park Wishes and we’ve just heard that planning permission has been granted and building is about to start. All those that have donated to the Riding for the Disabled Charity at Pennant Park have my undying thanks. I’ll let you all know how Wednesday goes.
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.