Increase in steroids?: I have upped my steroids... - PMRGCAuk

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Increase in steroids?

5lupins profile image
21 Replies

I have upped my steroids from 2 to 3 with Docs permission. Now I am thinking of taking a bit more !

My John is now terminal with metastasised lung cancer to the brain and now spine. He is in a hospice for pain relief but I think when that is sorted he will have to leave.

I would like him to come home when they decide to discharge him as he is the most lovely man and we have been together nearly sixty years. It is heartbreaking.

Has anyone any experience as he cannot walk or sit and I feel very scared. Jen

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21 Replies
SnazzyD profile image
SnazzyD

Ooh that’s so tough; my heart goes out to you. I know there are other who have had a similar experience. Is there a package of help available that will be set up to support his care and support for you?

5lupins profile image
5lupins in reply to SnazzyD

Thank you so much.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Jen,

My deepest sympathy for you, my late hubby’s last few weeks (liver cancer) were at home, but at least he was still able to get out of bed occasionally, and was lucid until the end so maybe not as difficult a situation as yours.

All I can offer is that the hospice staff and the carers they employed were outstanding - nothing was too much trouble - and their remit was to help both of us, not just him.

This allowed us time to be together, to talk as much as he wanted, time for me to just be with him, to remember the good times, to plan your future and to put his mind at rest about that. Many don’t get that opportunity so I do hope that happens for, it will sustain you through the bad times when they inevitably come.

My thoughts and best wishes are with you both.❤️

PS - take what dose you need to get you through the next few weeks - it’s only temporary....and you need what you need.

5lupins profile image
5lupins in reply to DorsetLady

Thank you Dorset Lady. I had remembered your husband had died but not that he was at home. I’m glad you had time together. We have been together since we were fifteen and worked together for forty years.

The last few months have been so hard especially with Covid. That it all feels so big inside me, I feel I could burst.

I am trying to look for the positive and trying to reassure him I’ll be ok.......

Take care J

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to 5lupins

I’m sure it’s been doubly difficult because of Covid- and yes it’s is overwhelming at the time....all you can do now and for some time is take it day by day - I know it’s a cliche- but it’s true.

And just be thankful for the good times you’ve had over those 60 years - ours was just under 50 - not everyone can say that - and it will help in days to come. x

5lupins profile image
5lupins in reply to DorsetLady

I really thought I could do the one day at a time pattern after three years but this last week I seem to have run out of mental and physical energy and just keep crying. I am not depressed just sad and heartbroken..

I know I have been lucky to have met him all those years ago. On asking a friend what he was like she said “oh he is lovely but very quiet.” He is still the same but without the drainpipe trousers and Elvis type quiff. 😊

Going to make a cuppa and swill my face ... again. J

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to 5lupins

😊

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to 5lupins

One thing I didn’t say - don’t assume you have as long as the doctors say - it can sometimes be a lot quicker than you think - so EVERY day does matter. ... and as others have said accept help even if it goes against your natural feelings. x

HappyDiamonds profile image
HappyDiamonds

Im so very sorry. My dear husband had lung cancer which had also spread to his brain and was cared for by me at home with the Hospice helping me at the end. In fact I worked for

the local Hospice for 35 years. You will find them a very great support both for your husband and yourself and any family. They will most definitely not just send him home after getting his pain under control, they usually have home carers. Support and help is continued for you for as long as you feel the need and my advice to you is to care for yourself too as its going to be a tough time physically and emotionally.

You will be in my thoughts.

5lupins profile image
5lupins

I am sorry you also had to manage like me as it is so hard.

I guess I am scared of not coping, but I so want to be with him. We are lucky as we are able to see him for two hours a day now.

Take care and thank you. J

GOOD_GRIEF profile image
GOOD_GRIEF

Bringing a loved one home for the final journey can be a time of great closeness that brings comfort to you both. Do make all the appropriate arrangements for support and palliative care through the hospice so that the peace and calm of your loving home is maintained.

One of the best things you can do for John is to show him that you will go on and live well. Talk with him about all of your shared memories, and tell him all the lovely things you may not have told him before about what he and your life together has meant to you. Most important, talk with him about plans for your future so he knows you will be alright.

Let him see that you are taking care of yourself as well as of him. Keep yourself physically well, making sure that you leave the house for a period every day for at least a walk. Play the old songs, watch the old movies, get audio recordings of much loved books. These can ease some of the more difficult moments.

Try to arrange to have his friends come by for short visits if they have been careful with COVID. If that's not possible, arrange for phone visits. These may tire him some, but he will also derive satisfaction from them.

As for pred, take what you need to be comfortable. Now is not the time to be struggling with a flare. Be proactive about it. Don't wait for a flare to take hold before you address it. You will both benefit.

I am so sorry you are losing your lifelong partner, but this can be a time of great meaning to you both. Being together as you have always been will bring joy to you both even in the midst of this sorrow.

You are both in my thoughts.

5lupins profile image
5lupins in reply to GOOD_GRIEF

Thank you for your kind thoughts. We have had so much happen this year for us to overcome and have kept going forward together. He had three months of chemo for his non Hodgkin lymphoma , followed by lung cancer surgery, then stereotactic radiosurgery for nineteen brain tumours. I know he came home ok and just when we thought ok he had to have raiotherapyfor spine metastasis. Still he was positive but the pain was horrendous hence the hospice. We remained positive but now he can’t walk or sit and he may become para plegic. He looks so beaten but trying always to cope.

I will try my best to think of your words and keep going. Thank you . 😊

PMRpro profile image
PMRproAmbassador

I'm so sorry - and I do hope you are getting all the support that is available to you. Hospice care can be amazing, whether in a hospice or provided at home. Marie Curie nurses are real angels too when you get to this stage.

My friend, a GP, has just lost her husband to colon cancer that had metastasised to the brain after 17 years and he spent the entire last few months at home. They did important things like just sitting together talking and having lunch in the garden at the start when he could still get about. It was the early days of lockdown and they found that quite a relief - no well-meaning visitors from the church dropping in without warning (he was church organist).

Once he could no longer mobilise he had a hospital bed and all the necessary equipment. It can be done - but you must look after yourself too, don't assume you will manage something if you aren't sure and ask for help sooner rather than later.

Hugs xxxxxxx

5lupins profile image
5lupins

We have been like your friend for months now and it has been beautiful.

When John was first diagnosed with the lymphoma three years ago I asked him if he had a bucket list ? No every day has been good my bucket is already full. He replied.

I have loved everyone’s help and kind words.

Thank you , it is a very hard day.

Love to all my far away friends. 🤗

PMRpro profile image
PMRproAmbassador in reply to 5lupins

I'm sure we all wish we could be closer to do something. If anyone offers to cook for you - take the offer and run. If they don't maybe you can arrange food to be delivered. And spend all the time you can with him, not cleaning, cooking or doing other things. They will wait.

Louisa1840 profile image
Louisa1840

My heart goes out to you. My eyes are so full of compassionate tears reading all these replies. And what wise replies they are....... I can add nothing except to extend my heart and prayers to you and John.

The love and years you have borne together will go on............ John's bucket is already full - Bless him.

5lupins profile image
5lupins

Thank you so much I am really struggling at the moment.

I have known how ill he is for some time but am still filled with this enormous pain.

I have just looked where you live so many miles but everyone’s kind words have helped. My neighbours and even friends seem quite distant. Covid I guess.

A kind word goes a long way. 🤗

Rugger profile image
Rugger

Oh Jen,

I am so sorry to read what you and John are going through. You are 'the most lovely couple'. I remember you telling me about when you first saw him - was he sitting on the back of a chair or maybe a wall? He is still your lad with the drainpipe trousers and quiff!

You so generously donated some of your surplus wooden items to raise funds for the PMRGCAuk Yorkshire support group and national charity. Those of us that have some of the beautiful work done by John and you will treasure them. I switch on my wall lights every day with your light pulls and open the mail with the paper knife.

The others have sent you wise words from their own experiences. I am just sending you love and wishing you strength to cope with the next part of your journey together. That bucket must be full of so much love. 💕

5lupins profile image
5lupins

How lovely to hear from you.

I was holding Johns hand yesterday and talking about all the beautiful things he had made.

I hope you are still a bit better, and I will always remember little Aunt Amy.

Take care and thank you for your strength and love . 🤗

MrsNails profile image
MrsNails

Oh Jen, l am so sorry to learn of your husbands prognosis, the Hospice will set up a Care Package & you must tell them about your own condition as that will be factored in.

You need to speak to your Doctor & discuss an appropriate way to manage your PMR during this time, my gut instinct is 5mg, speak to your Dr while John is at the Hospice so you can concentrate on you to be at your best to support John when he comes home.

Please take all offers of help that people offer you as that can make a difference, just having your sheets washed, ironed & returned makes a heck of a difference.

Keep Strong Jen 🙏🏼 & keep as well as you can.

Our thoughts & prayers are with you 🙏🏼

Kind Regards

MrsN

5lupins profile image
5lupins

I am trying to gather everyone’s strength and advice and will ask the hospice later if he can come home. His pain level was so bad last Friday when we asked that they felt he should be in Hospice. It seems when L4 of the spine is affected it is very difficult.

I am so glad I posted to you all as I value the experiences everyone has lived through.

Thank you for thinking of me and I was pleased to read where your health has improved and you are getting your nails done again. Take care J

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