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sandraW
Posts: 1010
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thanks for sharing your experiences . . .

Postby sandraW » Thu Sep 15, 2016 9:48 pm

Night night Mo, I hope you have a better nights sleep tonight now you know what path you are on, sandrax xx

Proud Wife
Posts: 720
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Thu Sep 15, 2016 10:47 pm

Hello mo

I will reply fully tomorrow as its late now but as a diabetic myself, I feel I should perhaps comment on peters diet. Was it mrs huge fat dietician that told you lots of carbs because if it was, I believe she was talking our her big fat bottom. I can call her that as I too am of large proportions or well fed as my husband used to say before he crossed the PC divide.

Did she realise or know that peters blood sugars were that high? Take it from me, at 29.7 no wonder he was feeling ghastly from that alone without any of his other problems. Carbs although needed for a balanced diet will push his sugars up. He needs to have the slow release kind such as oats, sweet pot sit and whole grain bread in moderation.

I must make it clear as per forum rules I'm not qualified to give any advice and perhaps there was a.good reason to suggest loads of carbs but surely not from a diabetes perspective. I can understand you being told to feed him up with high calorie food but carbs?

Please check with the doctors tomorrow just to make sure the advice you have been given is correct.

Wishing you both a peaceful night xx

Proud Wife
Posts: 720
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Thu Sep 15, 2016 10:59 pm

Mo I have just re-read your post. Perhaps I am wrong. Maybe the advice for carbs was for weight gain and insulin to deal with blood sugars. Rather than delete my post in case I'm wrong and in PC, carbs should be eaten in bulk despite diabetic status? My hubby never needed creons or had high blood sugar so I'm talking as a self inflicted obesity related diabetic .... Only because I gave up smoking to become healthier only to gain 4 stone and become diabetic!!! I'm not on insulin so perhaps it's different?

Just check in the morning though would you if you have any doubt or callour lovely specialist nurses here .

Hopefully you are both sleeping soundly in the land of nod and you've not even read my ramblings!!!

I will of course happily delete both posts if I'm wrong about the carbs as the last thing I want to do is confuse anyone!

Justamo
Posts: 444
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Fri Sep 16, 2016 7:58 am

Oh, thank you so much PW, Peter does need to gain weight. In February this year, pre PC he was 12st, about 1st 7lbs overweight. He went on the 5/2 and came down to 10st 8lbs in June and was delighted. Then in July he'd lost more weight, despite finishing the diet and during August all the trouble started, with him being 'official' diagnosed on 31 August. I had guessed the outcome in early July. No, I don't know why either, but I first came onto this website round about 9 - 10 July.

Yesterday he was 9st. He says he's 5ft 7 but since a laminectomy 30 years ago he's 5ft 5.

I'm off to Lidl shortly to buy butter (last bought that in 1970 - is it still three shillings and sixpence a quarter ?), full cream milk, and those yogurts you usually leave on the shelves after scanning the little box on the side. Then I'll check Diabetes UK for weight-gain diets and I'll phone our lovely nurses after the diabetes specialist nurse has been round.

I gained a stone after stopping smoking, but made Aran jumpers for everybody I knew which kept my hands busy, and after a couple of months the weight came off naturally. I was a career smoker and had persevered since I was about 13. I was 67 when I had surgery which was offered as an alternative to the strong possibility of having my legs amputated in a couple of year's time.

Thanks for your posts though because it's prompted me to research this a bit further.
You're so kind PW and I'll probably have more diabetic questions for you soon. Thus morning's blood was 14.7 - a huge variation from last night.

Enjoy your day everybody, I'm doing shopping, Peter's doing TV and dozing and Boris is doing sleeping.
Love, Mo

Proud Wife
Posts: 720
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Fri Sep 16, 2016 10:13 am

Yes, agree that you need to try to fatten Peter up. I managed to get just under 4 stone on hubby at one stage which helped his overall survival time I'm sure...simply because he had reserves when he needed them most.

Not sure if Peter has no appetite, can't face food etc in which case there are high calories products your GP can prescribe but if he's able to tolerate a normal diet, then go for double cream, butter, cheese etc. Another tip I was given was to add ground almonds whenever I could. So if you are making meals from scratch, fry everything and see if you can hide the ground almonds so it adds calories not flavour. Ground almonds are good to add to milkshakes with ice cream but subject to what dietician says about sugars and carbs, you may want to get diabetic ice cream.

I don't know anything about insulin controlled diabetes (I am type 2 on medication only) but if the team say he can have loads of carbs but with the appropriate amount of insulin to control blood glucose, then that's the way to go!

Good luck xx

Marmalade

Re: Thanks for sharing your experiences . . .

Postby Marmalade » Fri Sep 16, 2016 5:01 pm

Hi Mo,

So sorry to read of your experiences but read your comments to my daughter who was terribly upset about the timing of you seeing the anaesthetist only a day before the scheduled op and the shock you faced.

She puts it like this to her patients, a surgeon will decide if it is technically possible to perform an operation. An anaesthetist will consider whether the patient will survive the operation taking into account all their medical conditions and what survival beyond hospital looks like.

She also tells me that the MDT is really only about treating the cancer, Surgeon, Gastroenterologist, Oncologist etc and rarely has an anaesthetist on it. It does not necessarily consider pre existing conditions or non cancer related issues.

I am not sure what other options you may consider now or if Chemo is being offered, it usually is. Often people try it as it can always be stopped if it is too much for them. Nothing ventured attitude. Louis decided that he didn't want to waste time or have the stress of going to hospital for tests and being messed about with for marginal gain.

Our daughters advice to us was to get out of the hospital system as soon as possible and into good quality palliative care with your GP and the local hospice. The hospice approach is about comfort and quality, they have fantastic doctors of their own who have lots of experience, can offer courses for you both on coping and caring and have a wealth of experience in dealing with everything from finances to alternative therapies and diet. Having your GP and staff fully mobilised on your team will help tremendously. These people are there to help you and Peter get the most out of your time together. Palliative care does not mean that his symptoms and issues will be ignored, quite the reverse. He will get help from people who do nothing else but help keep people comfortable including any procedures required.

We found that doing the courses and clearing up finances and organising things at the outset left us free to not mention them again. Louis always said that he could drop down with a heart attack or aneurism at any time so he was not going to wait for the cancer to get him, he was going to forget about it as much as possible and carry on doing what he liked doing.

My thoughts on diet, Louis also had the big sugar highs and these can be controlled with medication. Our daughter and the GP agreed that at this point in Louis life, and with his decisions made, the most important thing was to enjoy it. Eat something, anything, and enjoy it and let the medics manage the side effects. Palliative care is a different philosophy and it often comes as a blessed relief.

If you would like to be in touch privately then just contact the nurses and they will give you my email.

In the meantime don't feel pressured into hospital treatment or palliative care, take some breaths and try and have a chat about what is important to you, what your fears are and what you want to do with the time you have, however long that be. When you have decided what is important the way forward will be clear and easier to follow.

Much love M xx

Veema
Posts: 424
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thanks for sharing your experiences . . .

Postby Veema » Fri Sep 16, 2016 8:39 pm

Have just laughed out loud at the fat dietician...I remember going to see the doctor when I was about 26...I have massive boobs and wanted a reduction...she told me there was no way, as I was clinically obese (I was about 10.5 stone and I'm 5'2", so technically, yes)...the doctor was about 30 stone!!!

If I'm totally honest, I think this is the right thing for Peter. If there was a better chance of the cancer not coming back, I'd say go for it, but with it being a huge risky op, with a still high chance of recurrence, then it's probably not worth the trauma.

Good luck with the diet...I managed to get Nige nicely bulked up after his op, he's like {comment deleted - moderator}

Vx

Justamo
Posts: 444
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Sun Sep 18, 2016 1:24 pm

Slowly, oh so slowly, getting into a routine. Peter is getting the different testing and insulin procedures muddled up. I think it's important that he does things for himself so that he feels that he is 'in control' of everything, so I do my best to offer subtle reminders and nudges, but sometimes he looks at me blankly. Yesterday morning I heard him in the kitchen at about 0630, and I rushed downstairs just as he was taking toast out of the toaster. I casually handed him his blood test monitor and he just didn't know why. I reminded him that his blood test has to be before meals, and then the penny dropped. As soon as we'd recorded the reading I handed him his insulin pen, and he said, "But I thought we already did that". I showed him the chart the Nurse left us and the spaces we had to fill in, and he complied quite happily, but I think he had completely forgotten what we are supposed to do.

Marmalade, did Louis get vague about things if his blood sugar was whooshing up and down the way Peter's is ? We go from off the scale on the meter (It says Hi, and I thought that was nice and friendly until I read the instructions again - it means it's too high to register) down to 7.7.
Having been on a diet this year Peter is very co-operative indeed about high carbs/high fat foods and keeps on suggesting forbidden fruits like pizzas (definitely not part of your 5 a day) and dolcelatte cheese.

I have been on a sortie in a brave new world in Tesco - the pastries and cakes aisle ! And the butter and cream section ! Our lovely nurses have given me plenty of get-fat-quick tips, and I think I will make some marscapone ice cream. Easy to pile the calories into that, and if I top it with forest fruits then it won't be too cloying. If the GP will give me some Fortisip I can incorporate that into a vanilla ice cream, and of course there's the ultimate treat : Fried Rice. I haven't made that for years and years. Mackerel is a favourite too, and that's been rationed a bit this year. (Bossy Google has just tried to change mackerel into smacker - why ?).

I've always thought that food should be a pleasure, not a therapy, and as Marmalade said as far as I am concerned Peter can have whatever he wants to eat - the only proviso is that he enjoys it. Of course we'll keep filling in the charts for his diabetes and then the medics can tweak the doses of insulin accordingly.

We've had two hospital appointments through the post. The first is for an overnight stay to remove the plastic stent and replace it with a metal one under sedation. Mr XXXX certainly sorted that one out quickly. The second (on the following day) is to have an endoscopy, and I think that's for the investigation into the enlarged adrenal gland that Mr XXX has shrugged off but Ms Consultant Anaesthetist questioned. I'm not sure if these two hospital departments are actually speaking to each other or not and if they really want to do the two procedures so close together, but we're seeing Peter's GP tomorrow so I'll ask him to check it out.

Our lovely nurses have sent me lots of information on diets, creon and pain relief. I don't really know Peter's GP terribly well, but I'll tell him that I've got this info and then whip it out of my handbag if he seems happy about it. If he doesn't I'll write to him and enclose it - you never really know just how receptive doctors are to outside agencies, or if they're going to be all precious about it and start talking about MY Patient. If he gets stroppy I'll offer DandyGal a million £s to come and sort him out.

Once again I'm wittering on and on. Somebody please tell me to shut up. I hope all of you are OK or at least OK-ish and I've no doubt I'll be back on here tomorrow with some drama queen hysterics. Meantime all is calm, and if not actually bright there is at least some happiness in the air again.

Talking of bright, did anybody else see that fabulous harvest moon on Friday night ?

Love
Mo

Proud Wife
Posts: 720
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Sun Sep 18, 2016 2:45 pm

Missed it Mo!

I don't think you will find anyone on here that will tell you to shut up, just the opposite. I like your sense of humour, my blood glucose meter says "hello fatso, stop eating, lose weight and get better control" so I suppose Peter's is kinder! Good luck for tomorrow, I hope you find Peter's GP as supportive as most of ours have been. Marmalade's GP sounded EXCEPTIONAL! with something like PC, I'd like to hope the GP would be only too happy to have the experts advise and for him to give support and answer questions when needed.

Enjoy the rest of the weekend xx

Marmalade

Re: Thanks for sharing your experiences . . .

Postby Marmalade » Sun Sep 18, 2016 3:10 pm

Hi Mo,

It sounds all go at your end! Good that the hospital appointments are coming through quickly and that you can get them over with.

Yes, very high or low sugars can have an effect on memory and have other side effects too so that is par for the course.

I'm glad you are seeing the GP. The situation is that Peter is her patient, she asks other agencies and hospitals to investigate and treat but you remain that GP's patient at all times. When it comes to palliative care the relationship with the GP is absolutely crucial to good symptom control and the local palliative care team will still revert to the GP for prescriptions etc. Very lazy GP's just write out whatever prescriptions the community or hospice nurses tell them to but if you can get your GP interested and working hard for you things will be much easier for you and better for Peter. I find honey works better than a big hammer, although I am not averse to using a hammer if the need arises!

The blood sugar thing is a bit of a nightmare as, when his appetite declines again as it probably will at some point the need to manage blood sugar alters again and it is very important to get the GP to regularly review the medication. We took Louis off all "preventative medication" as most of it is pretty low level prevention and it gets in the way of top notch pain killers and other helpful drugs. The one you need to keep on the alert for is constipation. It is especially a problem with morphine. Its very common but can cause huge problems so make sure you have the right remedies to hand and use them early. Constipation is a subject on it's own, lots of different types and some remedies work by hydration and some cause stomach cramps to encourage movement, for someone with stomach pain that is not good. The doctor daughter says senna or syrup of figs at the outset but consult with the GP or dietician if you are not sure.

I'm going to buzz off now, I loved your remark about Google correcting your words, happens to me all the time!

Best love M xx

Justamo
Posts: 444
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Tue Sep 20, 2016 9:53 pm

What a lot of plans I had for today. I woke up at 3.30 this morning, my brain was in overdrive; I made lists and plans and determined to get some sort of routine going now that Peter is able to do his own insulin injections.

So I got up nice and early, rushed off to the gym, had a brief chat with the girls, and then rushed back home again to attend to my lengthy list.

And do you know what ? Peter had a dose of the blues, so I was dealing with bits of gardening and trying to listen to him at the same time when an awful thought suddenly struck me.

Would he be here to look at the results of me planting spring bulbs ? So I put away the gardening tools and cajoled him into the car for a little jaunt along the coast road. And the sun came out, and the sea was stunning, and the rowan trees are so heavy with berries it looks as though they're flowering. Peter was happy and I'll remember this afternoon for quite a long time.

Good night folks.

Marmalade

Re: Thanks for sharing your experiences . . .

Postby Marmalade » Tue Sep 20, 2016 11:04 pm

Wonderful Mo! You are absolutely right, live for the moment and spend as much time making good memories as you can while Peter is well enough, other stuff really doesn't matter.

much love, m xx

Veema
Posts: 424
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thanks for sharing your experiences . . .

Postby Veema » Wed Sep 21, 2016 7:51 am

That sounds lovely x

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Thanks for sharing your experiences . . .

Postby Ruthus » Wed Sep 21, 2016 9:37 am

That sounds lovely Mo and living in the moment is so important. To make those memories and cherish this time.
Love Ruth X

sandraW
Posts: 1010
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thanks for sharing your experiences . . .

Postby sandraW » Wed Sep 21, 2016 10:56 am

Mo, I hope Peter is starting to feel a little better now he has treatment for his diabetes, good that you got out, spending those happy times together is much more important than gardening, even though jobs do have to be done.
Trevor used to eat whatever he wanted too and we soon got the hang of the insulin though he only needed it when he was on chemo, as even without steroids his blood sugar went up amazingly, the rest of the time he was just treated with Metformin. He said he felt better when he was using the insulin though, thinking of you both, take care sandrax xx