Our Thanks for Kindness Shown.

All our friends have been so kind following the progress of Julia on my blog. Actually the only reason I share it is to get visitors here anyway.  Today wasn’t a day I was expecting to share anything but laughs about releasing trapped wind but it’s fair I share the truth.

Julia and I arrived at 3.30 for our 4.00 pm appt. Despite the fact we were meeting with Dr. Hotlips we expected to be alone as Ju was to have the drainage done on her distended stomach. But, rather than pass up a chance to leer, one of my nieces dashed there from work to join us. At 4’45 we were still sitting there and there were still others waiting. When we checked they were all for our oncologist with earlier appointments than us. Somehow the glazed eyed staff had managed to double book everyone and the list was running about an hour and a quarter late according to Dr. Hottie’s nurse. The chances of getting the drainage done today were fading fast and Ju was in pain from sitting.

This morning our own doctor had descended upon us at home to check on us both which meant to roast me about not going very often and to give Julia a new prescription for her morphine at an increased dose AGAIN to try and control the pain. Ju had decided to start them tomorrow.

To our surprise and that of the people before us we were called in at 4.50 pm. The oncologist sat us down and picked up the report from the scan. He told us there wasn’t much fluid trapped and there wouldn’t be a drain. That was a major surprise after what we’d been led to believe by him, the scanner ( sounds better than scan technician) and the MacMillan Nurse. While my niece and I were still taking it in Julia asked whether the welling was then a direct result of the tumour. You could hear the regret in his voice as he answered a simple “Yes”. Taking the bull by the horns at this point she asked whether she’d still be here in August. I’ve suggested that the gap left between question and reply was big enough to run a London Bus through. He eventually replied “I can’t answer that” but his face did.

Julia shows strength and determination on the outside but I saw her diminish in size. Dr McHottie asked if she would agree to go into a hospice for a few days at least to try and get the level of morphine right to control the pain. She agreed and it’s arranged for tomorrow morning. This will be an opportunity for her to decide if she prefers a hospice later on or would rather be at home which is what I’d prefer. No-one knows at what speed this monster will travel now or whether we’ll be able to talk about treatments like radiofrequency ablation which our daughter found. This is a form of killing the cancer by burning it out but can it be done when the evil thing has wrapped itself round major blood vessels?

So there we are. A day we weren’t expecting and one I’ll never adapt to. I want to thank on behalf of both of us all our wonderful friends who’ve visited to keep up to date with Ju’s treatment and who’ve left messages of such positivity to keep us going. Sorry but there’ll be no windy jokes today. xx Hugs to you all.

What to do, what to do.

I’ve mentioned recently that neither Julia nor I are at our best at the moment which may account for my lack of forethought today. All will be explained.

Last Friday we had a visit from the Macmillan Nurse in response to a request and telling them that Ju’s stomach was/is very distended and painful. It’s fortunate that apart from her regular prescribed morphine she also has emergency doses for times like this. She wouldn’t have had them still if she’d let me have them when I dropped a knife on my toe last week though. Still that’s by the by. ‘M’ for that’s the designation I shall give the Nurse thought it possible that there was a large fluid build up which needed draining. As it was too late to do anything on Friday she’s arrange for bloods t be taken on Monday this week and she’s speak to the Oncologist about seeing Ju as soon as possible.

The ‘LEECH’ came on Monday and removed the obligatory armful from Ju and left the rest of the day free for us. I reminded Ju of something we needed from the next town over to distract her and then said that on the way we could drop off  prescription request with my doctor. This we did and just outside the surgery Ju suggested making an appointment for me. My distraction hadn’t worked but with a sigh of relief I pointed out how full the car park was meaning it would be unlikely there would be free appointments now, and that we couldn’t make them for Tuesday in case the oncologist called. We went and picked up the non-urgent item, had a coffee and returned home. No phone calls Monday.

Tuesday we did nothing exciting but despite the wait no phone call. On Wednesday we went to collect my prescription from the surgery but I still had the excuse of not knowing when her far more urgent appointment would appear. As we got home there was a message on the phone from the hospital’s resident Macmillan Nurse to say she needed to  speak to Ju but try as we might we couldn’t get hold of her. Today we needed to go out to the bank which of course meant having a coffee out. On our return Ju had a call from our daughter who is a little less patient than we are. The Oncologist would see us at 2.30 today. She wouldn’t be able to be there to see Dr. Drool with us and was sad but Ju was to faithfully repeat every phrase in his delightful accent on our return.

We arrived at 2.00pm and decided t have a glass of orange rather than torture ourselves with tea or coffee from the League of Fiends kiosk. It was lovely but a mistake as I then needed the loo. Dare I go in case Ju was called or should I just persevere with crossed legs? I decided to go in case it became a case of crossed eyes and a total inability to walk. I made it back safely before Ju was called. The great weigh in showed there is another loss of weight which led to guilty looks from Ju. I know cancer patient lose weight but she doesn’t help by not eating much. Anyway, I told tales on her to Dr.Sex Bomb and got her a new course of steroids to see if we can improve the appetite. He palpated her stomach and decided we’d better have a new ultrasound scan to see how things lie. I bit my tongue at this point as I’ve said before now we need to see what’s what in there. But the silken tones of the Good Doctor Gorgeous placated even me this time. Actually he distracted me by asking where his fan club was this time.                The appointment will probably be the beginning of next week.

On coming out Julia and I went off to the pharmacist and as we waited for the steroids Ju decided to text Yvonne to say how she’s got on and also texted one of my nieces. That was where my problems started since I hadn’t told the girls where we were going and who we were going to see. We were back in the car coming home before Ju’s phone beeped with a text. I cringed. All has been peaceful since Sunday when my nieces were here and I knew things were going to happen, and not good things either. When we got home I nipped to my bedroom where I’d left my phone. There were three outstanding messages from Niece Number 1. Starting with why didn’t I say we’d got an appointment, to how could I go to see Dr. Yummy without their support ( read- without them ogling him) to have I got my doctor’s appointment yet? Niece Number 2 has still to come back to me but it’s written in stone she will. I’m semi safe tomorrow as I know it’s main shopping day and as Yvonne is meeting us it’s just a case of staying out long enough to make sure it’s too late for an appointment then. For now I asked Ju to text my niece and say my phone has no credit so I’m safe tonight. But tomorrow…… What to do, what to do?

Changes to sleeping works.

Yesterday Tuesday 6th November was our latest visit to see Dr.G whom the girls refer to as Dr.McSexy or variations on the theme. The appt was changed to a Tuesday and was later in the day than usual which had it’s good points and it’s bad. The good points- Ju was uncomfortable and in pain and was able to describe the feelings to him directly. The Bad Points- Ju was uncomfortable and in pain.

Attending yesterday were my daughter and her new husband who took us for lunch on the way after which we stopped and had coffee at garden centre where Yvonne and Julia were able to drool over the beautiful ( and very expensive ) Christmas decorations. When we arrived one of my nieces was waiting for us. I have to say that the whole family has been marvelous about Julia’s illness, either wanting to be kept informed or actually attending the appointments. My niece Karen rarely misses any though whether it’s for Ju or not or to ogle the oncologist remains to be seen. At least my daughter wasn’t going to be saying “Phwar” with her husband in such close proximity.

While we waited to be called in I found myself remembering last month’s argument because I wanted to get a more up to date picture. I can understand the point of view of those in opposition but as I spend all my time with Julia, knowing how things stand would give my brain facts to work on and I’d know how far to push and /or encourage Ju in various things. Eating, sleeping and going out. Anyway Ju’s name was called and I suddenly found myself not wanting to go in with them. Ju had promised me she’d be honest in telling him how she felt rather than the automatic “Fine Thanks” when asked how she is. Everyone went in while I the coward dashed to the loo to settle my now churning stomach.

I came out and decided a cigarette might be a good idea to calm me while they were all inside. I just finished it in time to see them all trooping out. Dr.G had asked Ju if the MacMillan nurse had been in touch to which we were able to answer no. We know he’d requested it a month ago. He left the room. Reports say that after a short absence Karen was heard to say, ” Boring without Dr McHottie isn’t it”. He’s also checked why the pain management clinic hadn’t yet responded with an appointment and chase it up. We are to give it to the end of this week before reporting back if there has been no action.

I sleep for roughly four hours a night. In recent months Ju has been going to bed for comfort at about 6pm then watching TV till about 1 am before sleeping. Then I have to rouse her at 8am to deal with the pets ( a playtime they all look forward to with her). On a Friday it’s usually 6 am for shopping. He asked about the pain and about her sleeping before prescribing a new medication which helps with sleep and pain. Last night I went in at 10.30 and she was spark out until I woke her at 8 am today. She was also much more comfortable and we were able to go out for coffee this morning. I think the medication also plays tricks on memory since when time to pay came she remembered she’s left her bag in the car. It’s funny, but this particular medication has been working for months before it was prescribed.

Her weight was the last subject for discussion. Ju is happy that she hasn’t lost any weight in the last month whereas I’m unhappy that she hasn’t gained any despite my hard work. She’s shrunk from a size 14 to a size 8 which is ridiculous. Anyway Dr McBrownEyes has doubled the dose of appetite increasers and suggested  ( with some force) that Ju tries grazing continuously throughout the day. This mornings expedition that led to coffee was to a supermarket to find lots of things which she likes the taste of so she’ll be encouraged to eat. The fridge is now full of yoghurts and rice puddings with a large packet of milk chocolate digestives- for the sake of balance I made sure we got a large packet of dark chocolate digestives too.

So now it’s back to the drawing board. No scan means we ( I ) don’t know how things stand but things are going to be great if the sleeping pills/pain relief continue to work and give her pain free nights. They will be great if we can have a lot of much more comfortable days too. Things will be magnificent if when we see Dr McDon’t it make your Brown EyesBlue, I can report that Ju’s memory has improved and she remembers her purse when it’s her turn to pay. I need her help to choose Christmas presents so she has to buck up. I’m almost done but my brother in law is proving difficult and Yvonne is giving me no idea this year apart from a coat for her birthday. I wanted her to take it now since she was shivering in our arctic blasts of yesterday , but no, she said blue suits her.

Thanks every one for letting me blow off steam like this and indulging me. I love my wife dearly ( and I mean expensively)and there are times I don’t know which way to turn. Am I doing the right thing?  Who do I talk to? What can I do next? Talking to you all helps me considerably and I do appreciate those who follow the blog and comment.