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Extreme fatigue

nelly the elephant
Posted by

My husband is suffering from extreme fatigue and we neither of us really understand why. He has a terminal diagnosis with stomach cancer.  He is not eating a great deal. His specialist palliative care nurse keeps saying Gordon is not showing any signs of being in end stage which i understand.  But he also doesn't think the fatigue is related to the tumour.  G is so frustrated as he struggles to stay awake.

Any thoughts??

Penny 

Needing friends
Posted by

Hi penny, I'm no expert, but I have thought of a couple of things. Would a blood test give any indications as to why he is tired, to ensure he is not anaemic or even loosing any blood.? Also, would his fatigue be a result of all the stress he's been under. If he's not eating too well I guess his energy levels will be down.  I would  speak to his doctors. It's so hard I know and I hope I haven't just stated the obvious, things you've already done, if so please forgive me. Wishing you well, pam xx

nelly the elephant
Posted by

Hi pam. Don't worry, i know you're trying to help. His bloods are all fine, no sign of infection, haemoglobin levels are good (his nurse says better than his!!), kidney/liver functions good. Total mystery. 

Thank you for reaching out!

Best regards

Penny

Granny Sue
Posted by

Is he on pain relief medication can cause fatigue ? Also treatments can cause fatigue especially radiotheraphy .Sometimes I think its the sheer fact of having to endure all that cancer throws at you .The palliative nurse should be able to get hold of a booklet called dealing with fatigue Bill my husband was given one by the radiotheraphy team it might help. Bill dosent eat much these days still trying to get pain under control from his original op 3 and a half years ago .He had oesphageal cancer which metastasised to the brain .Think we are in the same boat as you he isnt so well but not at the end stage yet .We arnt having any more scans or treatment just deal with symptons .The last lot of radiotherapy slowed down the brain tumour but latest scan showed a small increase in the area could be tumour or scar tissue .In the brain unless you actually go in and examine the tissue its hard to tell what it is .Thank goodness for this group I feel now its only the people on here that really understand friends and family are brilliant but they cant really understand because they arnt in the situation .Take care lots of hugs xx

Granny Sue

nelly the elephant
Posted by

Thank you for your response.  Gordon has had no sign of metastatic spread according to scans. We are trying to control symptims too, mainly acid reflux and cramping pain.  He is on pain medication but has been for some time and it's only recently that he has been struggling with the fatigue. Last scan was 5 weeks ago. Not planning any more, just symptom control and trying to pass the time.  Gordon is such a doer that being unable to be active and about is doing his head in! 

People always say make the most of the time you have left but difficult when you can't do anything!!! I'd drive him to see his granddaughters but it's too much for him.

Lots of hugs to you too. 

Xxxx

Granny Sue
Posted by

Exactly we cant do anything either as you say its such a shame as its a window of oppurtunity .We have twin grandsons and although Bill loves them the reality of them is too much .They will be six in January and all they know is Grandad not being well  .I think these next few months will be difficult we have good palliative and g.p support see how we go .Someone put it really well on here grieving for the life we have lost will have to dig deep into my powers of endurance now thank you everyone for all your support x

Granny Sue

Needing friends
Posted by

Just wanted to say that yes, it's virtually impossible to make the most of time left. We went to the forest of Dean for the weekend a couple of weeks ago. He had wanted to go abroad but he was the only one who didn't realise it would be impossible, anyway, if he could have come home the first night he would have,!, not because of anything wrong with the place, he was just exhausted. The only upside is that I'm not bombarded daily about trying to get insurance for abroad. He is in the hospice today waiting for an ultrasound to see 8f they can dra2 his abdominal ascites. I shall go visit soon to make sure he doesn't discharge himself if it hasn't happened yet xx

Needing friends
Posted by

Quick update, after being adnmitted yesterday afternoon he's just being sent home, no one to do an ultrasound til Monday,! It's enough to make you weep! 

liza28
Posted by

Hi nelly

I'm new to the group, just wondered how your husband was getting on with his fatigue? My mum has bowel cancer and is currently suffering from what I would describe as chronic fatigue. She's just completed her first course of palliative chemo but has been told to stop (it's made her very weak) and focus on "quality of life" - hard to do when she's so tired!

For her it is very much a symptom of her cancer. Her appetite has been poor but we saw the dietician last Friday and have been given lots of nutritional supplements for her to try, to see if we can increase her calories and give her more energy that way. She did have a 2 week course of steroids before the chemo, and they definitely gave her a boost.

The consultant who advised stopping chemo suggested short courses of steroids "and other medication" to try and get her back to doing some of the things she enjoys for whatever time she has left. But we seem to be in limbo at the moment - she's been referred to the district nurse but no contact from GP or consultant so we're not sure who we go to about the steroids. I know she would love to be able to enjoy what may be her last Christmas with her two grandsons but she is just feeling wiped out at the moment.

nelly the elephant
Posted by

Hi there

G's fatigue is still with him. It's really hard - on the one hand you want to enjoy whatever time you have, on the other, there's no energy to do anything.

We are in the care of the palliative care team at the local hospice and they look after g's meds and tweak them as necessary. If you have still not heard anything from gp or dn, i would suggest you chase them up. You haven't got time to waste. 

I make g a chocolate and banana milk shake sweetened with honey, made with fortified milk. I fortify whole milk with 3 tablespoons of dried milk powder per pint of milk. He enjoys it and it's stuffed with calories. 

There's not much else i can say.  Fatigue is just part and parcel of cancer, cancer treatment, meds etc, etc. 

Best of luck with this, i know it's really frustrating and upsetting .

Regards

Penny