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Hi sheena, Roger enjoyed rice puddings or soup and he also liked bananas and custard. Although he had diabetes there are low sugar varieties available. Hope you have some joy with your go next week.


Sue

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Hi all not a lot has changed this week.Steve is eating a bit better but Dr has only prescribed 12 steroids is this normal would of thought if they were helping Steve eat he should be taking them all the time ? palliative care nurse came home on Tuesday she was lovely and surprised we had already discussed what Steve wanted care wise.feel happier now I have her support.worked out Steve has lost 7 1/2 stone in 10months he really looks skeletal so sad .received drs Bill 2 consultations and 1a&e visit £240 the joys of living on an island.hope everyone else is ok sending hugs x

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Hi Sheena


I have no idea about the steroids although my husband is still on them, albeit on a lower dose because it certainly helps with his appetite. You say you live on an island and I don't know if I'm allowed to ask where on the forum as it's so public?


I know there are plenty of people who know more than I do so I'm sure they can shed some light on why you were only given 12 tablets. My heart goes out to you that you have to pay for healthcare though. That must feel like a real punch in the face at a time like this. Great Steve's heartburn sorted. That's a lot of weight to lose in 10 months. Hopefully the steroids (even 12 of them) will help him to eat some more and if he can put on a little weight, that should help too.


Take care xx

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Saw dietician who says Steve is taking too much creon. So had a go at her and said don't think so. He isn't allowed the fortisips as too much sugar. Didn't really learn much from her so a waste of time.


Steve wasn't feeling good yesterday so went to see chemo nurses. His blood sugar has gone up to 31·7mmols. So diabetic nurse has started him on another tablet. Took his levels today and thankfully have dropped to 17·8.


Steve is feeling irritable and is very restless - hoping he will be feeling brighter by weekend.

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PCUK Nurse Jeni

Well done Sheena in your answer about the creon!


Of course, there is no such thing as "too much", as simply, the body will get rid of what it does not need, just like what happens when a normal pancreas makes "too much".


So sorry to hear about Steve's blood sugars - very high all right, no wonder he has not been feeling well. That will also cause him to feel irritable and restless.


Did they stop the steroids, as these will definitely be contributing to high blood sugar levels?

Kind regards,


Jeni.

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No I asked about steroids and they said to keep taking them. He was only prescribed 12 so only has a few left. It's funny because Steve said since he been taking the, he has felt worse.


We have community nurse now twice a day so a bit more help. Levels today are 21·5 so not going down much. Unfortunately he isn't eating much so that's not helping.

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It's almost midnight and I can't get Steve comfortable. He has bad indigestion, belching a lot, pain in lower back. He feels sick but can't. He doesn't want to go on any more and I am crying because I feel so helpless. He wants to die and has even mentioned taking his life. Why is life so cruel? How am I ever going to pull him back from this? I am heartbroken.

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Sheena you are doing so well looking after Steve. I know how hard it is to watch your man suffering and to hear them say such things, we can only give them love and support so keep on doing what you're doing.


Nights can be the worst time, I'm sending you a virtual hug. Hang in there.


Julia x

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Sheena, I just wanted to say I understand how difficult it is for you both and I am thinking of you. Just keep up your wonderful support for Steve. The high blood sugar may be making him a bit confused in his thoughts. My husband could be like that saying things that were out of character. Catherine

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Sheena,

Sorry to hear that Steve is so down, As Julia and Catherine both said, you are doing a marvelous job looking after and supporting him, but it is so very scary, and it being night time makes it worse as you will both be tired as well. The high blood sugar will be making him feel rotten on top of everything else, I hope today sees him more comfortable, and I too am sending you a big cyber (((hug))) just wish I could do more to help, thinking of you love Sandrax xxx

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So sorry to hear that Steve is feeling so poorly, both physically and emotionally. I do hope his physical symptoms ease soon so that he can enjoy what time he has left. I fully understand how someone could feel they don't want to go on if they are feeling too ill to enjoy any part of their day. But I also know how the saying 'what a difference a day makes' can apply to PC. Dreadfully ill one day and much better the next and so on. I hope this is true for Steve and that he rallies again. Thinking of you and do try to get some outlet for yourself or some support from people round you. It is so difficult as a partner to cope with this. xx

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PCUK Nurse Jeni

Dear Sheena,


So sorry to hear what Steve is going through, and you as well.

How is he today Sheena? How is the pain in his back? Has the belching eased off? And the feeling of being sick?


Certainly, as the ladies have said, the high blood sugar is probably a culprit for the sickness. You might try peppermint tea for the belching? Its usually good to settle the stomach from wind, and also, good for nausea as is ginger.


Sheena - let us know if we can help at all, and if Steve is no better, do get him to the hospital, where he can be looked at. His blood sugars need lowering.


Hugs,


Jeni.

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Ty all. After a really bad night, the worst one yet as I am so tired, but survived the day. Got peppermint water and thank God it is working. Purchased a lot of pillows so he is well propped up and feeling more comfortable. Sugar level is down to 14·5 so hopefully will keep going down. I am sure this was the problem with his anxiety.


Have told Steve he is not going any were yet. I have fought hard to keep him alive and he ain't giving up yet. His reply was yes you are my Angel who will never give up and I won't let you down. I will have had pc for a year in March and I am going to celebrate that I survived a year.


So that is now his target to reach. Feeling more happy tonight but still worried as he really isn't very well, but tomorrow is another day.


Ty all

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Hi Sheena,

I really feel for you but you are doing an amazing job. I hope the weekend is better for you both and Steve is more comfortable. Keep an eye on those blood sugars levels as my Mums were high and then went so low she had a hypo!

I am thinking of you and I know exactly how you feel. Stay strong.

Love Sue xxx

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Dear Sheena


As a diabetic myself, I know only too well how horrible Steve must have felt with such high blood sugars alone. I can't imagine just how tough it must be on you to see him suffer. That's my biggest fear.


Late at night when you are so exhausted is the worst possible time emotionally but try to keep telling yourself you are doing your absolute utmost. My husband is only a few weeks behind Steve in his diagnosis so we are both going to celebrate one year PLUS survival together and then a lot longer after that too. okay?!!


I hope by the time you read this message, Steve's sugars are back down, he's feeling better all round and you've managed to get some much needed sleep.


All the best xx

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To all you wonderful people you are all my rock. I have wasted hours at various appointments and got more confused at each one. Most of what I was told contradicted what the last dietician, nurse , Dr,diabetes nurse etc told us. Nothing helped, BUT when I come on here you explain it all simply to me you know what works you share your ideas and it works. I am so blessed to have found you all. Steve is having a good day eaten a little, watched rugby, sugar level still at 14 but getting there and indigestion is sorted x

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Hi Sheena , just checking in, glad Steve has enjoyed the start of the 6 Nations. And 14 is still high but not too alarmingly so - hope it continues to fall and he feels more 'human'. Sending you lots of love and we are here for you. Also any tricky questions in week days, do ring the nurses on here, they are so knowledgeable and talking to them can really set you on the right path. But we are here for you too and especially at weekends! xxx

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