Restless, anxious about my husband
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53 posts since
28 Jan 2020
I am trying so hard to be strong for him. Tonight he said he thinks he’s “had it” I asked him why and he said everything seems to be gearing up for the end. He felt that the Marie Curie nurse visit last week meant he would go soon. I said I kind of understood his fear but she is there to support him. I suggested he talks to her about this next week when she visits again.
I sat on the edge of his bed and talked about the holiday we’ve booked for March. He said it’s only 26 days away, so at least it’s given him something to aim for. He’s counting the days He’s anxious about travelling. There is a hospital with an Oncology unit about 8 miles from where we will be staying. I think it’s best if I call them before we go to check they’ll be able to help him if he got taken ill
Hes got his sickness under control and that’s helped him a little. He’s not eating much but he has an appointment with the dietician next week.
My heads still in a whirl, I’m not sleeping properly I don’t really know what to do or say I’m simply being guided by him. I accept what he says and reassure him as best I can.
Im going to try to be brave and ask the nurse some questions next week
This is the worst thing to happen to us all but we are trying to make the best of now
Kuiper
26 posts since
12 Jan 2020
So sorry for you but your husband is lucky for your support. Do you think a holiday will be enjoyable when he’s so sick? It might be extra stressful. It’s so hard for non cancer sufferers to know how bad this disease can feel or how sick it makes us. The doctors will be honest with you if you ask what the prognosis is. You can only do so much, sometimes reassuring a cancer sufferer can backfire because I’ve had people tell me ‘it’s not so bad, you get all the support you need’. This is not realistic. I cry with pain every day and meds can only do so much. Listen to your husband, if he feels he’s getting worse or not strong enough I would take that on board. It’s a wretched disease. Your kindness to your husband must be the best comfort.
53 posts since
28 Jan 2020
Hi Emeraldstar
Thank you so much for your lovely reply to my post. It’s good to have a reply from someone going through this personally. It gives someone like me an insight
Ive reassured him as regards speaking to the oncology nurse, the fact that the consultant has given him chemo arranging radiotherapy to try to prolong his life up to 12 months. I can’t give him false hope or promises that wouldn’t be fair.
His prognosis is 4-6 months without treatment or possibly 12 months with he opted for treatment
Weve finally made a will, organisedpower of attorney for finance health and well-being. We should have done this long ago. My husband said he feels happier knowing this is sorted now.
He booked this 5 day coach trip with his sister and brother in law. I don’t care if we don’t end up going as long as we are together but he loves the Lake District and said he really wants to go. There’s no pressure on him I promise
We have a kitten who is so incredibly gentle with him and she’s a great distraction
please stay in touch and I’ll have a read of your thread too
once again thank you Emerald
865 posts since
3 Dec 2019
Hi kuiper i understand what you’re going through but from the other person I’m a lot different to your husband, I’ve got prostate Cancer gone to lymph nodes, spine, ribs, pelvis and a lung. Was diagnosed Feb 2016 been on palliative care since. I’m fighting all i can. I promised my darling wife in 1973 that if she married me I’d look after her when she got old she’s nearly 14years older than me. She now has Alzheimers and parkinsons, so it can be awkward but we manage and I’m sticking to my promise. YOU BOTH have to fight for what you want. Good luck and best wishes…………….. Billy
53 posts since
28 Jan 2020
Hi Billygoatt
What a lovely post! It’s so great that you’ve fought for you and your wife. Your love for her comes through so strongly it’s lovely.
My husbands care is palliative but he’s clearly not realising/accepting this yet. When the Marie Curie nurse came last week she realised this so she just discussed his meds. She’s due back next week.
The chemo and radiotherapy are also palliative Again he hasnt realised that either. He knows the prognosis is not long so maybe he’s just not letting on. I’m letting him take the lead at the end of the day this is about him
Please take care of you both
love Kuiper
865 posts since
3 Dec 2019
Hi kuiper, is there anyway you can get your hubby more positive and to fight more. I’ve had palliative hormone therapy and palliative chemo. Oncologist said I’d need more chemo before the first year was up its been four years now and still not had second one, you and him have to be positive and fight try to be as normal as possible, definitely fight for that holiday at least then fight for the next thing. It certainly can’t make things worse. Thinking of you both you can have some of my positive thoughts and welcome to them……….. Billy
P.s its wrong to give a time line they don’t know someone has worked it out averages years ago but treatment has improved since so it’s out of date. Best wishes…
53 posts since
28 Jan 2020
Hi
Thats sound advice you’ve given to me. After the holiday the caravan season starts on the 27th. I’m hoping he’s well enough to get up there and we open up our caravan. He loves fishing up there. He loves the peace and quiet and calm. I told him I don’t want this disease to come between what we would normally do but I would understand if he wasn’t well enough. I agree that we need to fight for each goal no matter how small
i loved what you said about the timeline, let’s face it medicine has advanced immensely. I wish there would be a cure for everyone really soon
He is fighting as best he can, we are a very close family and he hates seeing how upset our daughters and son are. They put on a brave face, crack jokes but you can see the sadness in their eyes
please take care
Kuiper
1 posts since
6 Feb 2020
Hi Kuiper…don’t allow the doctors prognosis to take away your hope. They do not know our expiry date. My mother was diagnosed with gall bladder cancer in May 2019. It was found during a routine surgery for gall stones. Her CT scan at the time was clear and she was scheduled in for a liver resection in Leicester in July. On opening her up they discovered that it had spread to her peritoneum and so they just closed her up again. We were told she was now stage 4 – inoperable. Don’t give up. Wishing you and your husband strength.
3 posts since
27 Jan 2020
I’m so sorry your going through this I’m also watching my husband go through the same.
My husband can’t have treatment as he has a rare pancreatic cancer and so we are just taking each day at a time.
Always talk to your nurse even if you walk her to the door when she has finished her visit if you feel you don’t want to talk in front of your husband.
Talking helps I find even with my husband as I tell him one day I won’t have him here to talk to so need to know now.
Be open with him and talk as much as you can.
I’m sitting here watching my husband sleep I have good days and bad days but I’m always here if you want to chat x
53 posts since
28 Jan 2020
Hi Taylor. Thank you for taking the time out to reply to my post. I really appreciate it. It’s a horrible helpless feeling I have and yes you’re right about making the most of now. I feel for you with your husband.
Im sorry if my posts short. I’ve had a day where my dad had a dementia assessment in mom and dads house. It took 2 hrs. I’ve come back drained. Thankfully my husband was hungry tonight but wanted hot dogs (Richmond sausages) so I did him a couple and then he had two pieces of cake. I love when he eats. I get really concerned when he doesn’t. So now if he says he wants something I just do it for him. Sometimes he will cook if he’s not too tired. Some days he barely eats
Taylor I will try to stay in touch. I’m going to try and have a short nap while he’s resting
please take care. I am here for you whenever I can and I will always reply
love Kuiper
53 posts since
28 Jan 2020
I’ve not been on for a while but everything’s ok as it can be.
We had the most amazing week at the Lake District. The weather was dry apart from one day. There was snow on the mountains and I took the most amazing pictures. I took a lovely one of him with the mountains behind him. It was a holiday of memories. I was an emotional wreck inside. On the last day I cried. This was a mixture of happiness and obviously sadness. I did this privately. However, he looked so sad and we just hugged side by side looking across at the beautiful view from the hotel. I’m so relieved we did this
So, back home to reality. He had a week of radiotherapy and it made him sick. The idea was to try to shrink the tumours on his vertebrae to try to help with the pain. It was 5 days finishing last Friday.
He’s just come up to me saying how much pain he’s in with his groin. We are going up to the hospital today to collect his chemo tablets, so he will tell them. If not we will phone the Marie Curie nurse
865 posts since
3 Dec 2019
Hi kuiper really glad your holiday was good, that’s want you both want. Hope all the photos are OK probably are digital nowadays.. Get some framed as reminder of good times.. And get other things planned,
Keep positive.
Love….. Billy xxx
63 posts since
15 Jan 2020
Hello there
i am so glad you enjoyed your holiday. What lovely memories you have made.
Do you and your husband feel that the radiotherapy has helped? What is the plan with the chemotherapy tablets? Does he tolerate them – my husband couldn’t manage them.
We are all isolated now with this virus fear and none of us wants to be near hospitals. Good luck for the next few days and weeks, we all need it.
Hugs from
Ronnie
53 posts since
28 Jan 2020
He woke up yesterday morning saying he felt sick. He vomited violently for ten minutes. He came back in almost grey looking with slight blueness around his mouth, shaking from head to foot. He got back into bed and kept saying he couldn’t get warm. I asked him something but his reply was incoherent. I got the thermometer popped it into his ear, 39 degs. Offered him paracetamol with a cool drink he said he couldn’t swallow them. He sipped the drink. I got a cold compress and put it on his forehead. 15 mins later checked temperature again, 39.3 degs.
I got his red card. I phoned the number. Hospital switchboard took ten minutes to answer and transferred my call to oncology. They advised I hung up and phoned 999. The ambulance came quickly by which time he couldn’t answer questions. He was very confused and I was scared but acted calmly.
He got taken to hospital with me because he was so confused. Long story short he has pneumonia. I was sent home as he had to be test for Covid-19. Results in 2-3 days I have asthma/Bronchiectasis lung condition
Hes on intravenous antibiotics and fluids. I can’t visit When I left him at the hospital, as I walked away I started to cry he didn’t see I got outside and sobbed
I feel so useless but I know he’s in the best place
865 posts since
3 Dec 2019
Hi kuiper, so sorry, your husbands in Hospital but like you say it’s the best place to get him sorted, bet you feel lost not being able to visit. We’re all praying and hoping for a safe recovery so he’s soon home with you, hope you can visit soon.
If you kneed to talk you know thares plenty on here will listen, your both in our thoughts and prayers.
Billy
Restless, anxious about my husband
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