My much adored husband was told yesterday that he has incurable bone marrow cancer and there is nothing more they can do for him. He is slowly dying.
This morning my PMR attacked me yet again . Terrible pain in both arms ,tops of legs etc. I am just down to 4 mg Pred. from 4.5.
Do I wait to see if it will settle or shall I go up to 9mg and then taper ?
Thank you my dear friends
PS. I have just taken another 1 mg Pred. It is tea time here and Itake my Pred in the morning
I'm so sorry - there is nothing more I can say, Sending virtual hugs.
Don't even THINK about waiting for it to settle - do the flare protocol but don't go back to less than 5mg if you even go that far, When my husband was dying a few years ago I was on about 11mg when the process started when he fell and fractured a vertebra. For nearly 2 years everything was down to me and I had to be able to function - and the dose of pred I needed slowly crept up to about 15mg which just covered what I needed. It went even higher after he died - about 3 or 4 months afterwards the PMR went ballistic. You will get through this - we don't have much other option, but you need all the help you can get, including from those little white pills, not just for the PMR but for the stress that is kicking it into wakefullness.
All that matters at the moment is that you get through this. Have they given you any sense of time scale? How unwell is he at present? What resources have you got available to you? Have you family nearby?
Thank you so so much dear friend for your wonderful support and advice. The Specialist would not commit to any time frame, but Hubby is sleeping most of the day and eating very very little. He is having a large blood transfusion tomorrow morning, that is all that can be done and is really palliative. From now on he will have blood tests weekly. He is very very anaemic.
Our only son lives near Brighton —- but does try to come up as much as possible. As you know, we are in the NorthEast. I spoke to our GP today and he said when we are ready we can have the district nurse and carers to help us. However hubby is a very Macho guy and says he doesn’t want them……. meanwhile he fell in the bedroom last night and I couldn’t get him up. Somehow he managed to kneel and hold onto the chest of drawers to lever himself up. It is very frightening.
He won’t let me tell our friends —- or even my brother who lives 30 minutes away, at the moment. He is a very private man! At least I can confide in all my wonderful friends on here—- everyone’s support has been phenomenal.
Whole hearted thanks and love xxxxxx
So sorry for your sad news and the challenge with your health and that of your dear beloved husband. The advice and support from the lovely ladies who too have been there, especially the care of yourself will prove invaluable when your strength both emotionally and physically will be tested.
Thinking of you and your husband in this very trying time.
If he falls - you must have help to get him up. How bad is his Parkinson's because that all contributes to his mobility problem?
Mine was also very "I don't need help" - but YOU do and he must also be made to understand that, I'm a LOT younger than you and I remember being almost hysterical when mine fell the first time because I couldn't manage as much as he thought I could. I was right to want the ambulance he insisted I didn't call as he discovered next day when he had excruciating pain if he tried to move - he had fractured a vertebra. That ended up with nearly a month in hospital, he'd been in for a week, sent home, fell, back in, home, developed a PE and back in!
We were lucky here in that I could call our version of 999 and someone was always here in 10 mins. After a nasty Italian in the call centre told me that wasn't what they were for, I should fetch a neighbour (at 3am!), we got their alarm system - it was a direct line, no call centre - the same paramedics came but we were paying a modest monthly fee! They were wonderful and told me never to listen to anything like that Italian guy because he needed someone who knew HOW to lift as he couldn't provide any assistance to stand at all. He ended up in the ED several times because he was on blood thinners. Unfortunately NEAS is under dreadful pressures so you are unlikely to get that sort of service.
I don't know if this system has any quicker access:
but your husband must accept that if he falls and you can't get him up. he could make things far worse for you both. If you hurt yourself he could have to be in hospital as he has no-one to care for him. The paramedics don't insist on you going to hospital unless there is an injury. Do call them and find out how much help they would be for you.
I assume he has agreed to your son knowing? I'm sure he must be beside himself about the two of you with him being so far away. It is a very difficult situation - I have another friend whose husband is dying but she is a retired nurse who used to work in end-of-life care and he is quite open with her - won't let the children or grandchildren see anything he perceives as weakness though and refuses his morphine when they are around. Men!!!
Hopefully he will be a bit better after the blood transfusion and I do hope he will agree to someone helping. In your place I'm afraid I would be ignoring his demands for secrecy - on the grounds YOU need help even if he doesn't think he does!
So very sorry to hear how poorly your husband is - what horrid news to receive. It’s no surprise that your own symptoms have returned and you will get such good advice here and also much verbal and virtual support.
Sending a virtual hug to you and hope friends and family can help give you love and support.
Try to look after you!
So sorry to hear this. It’s devastating I know.
For PMR - go up to 9mg to get you through the next week or so, and then see how things are… you don’t know at the moment… so don’t try and make a decision today, you need time to come to terms with the news, and to gauge how YOU are. If you are undecided at that point. then come back to us.
As for your husband, all I can say from personal experience is be led by your husband… talk if he wants to talk [my hubby and I talked so much there really wasn’t a lot left to say, but I know not everyone is the same], go out if he wants and is able to go out, or just be quiet if that’s what he wants.
You do need some time to yourself, so if he’s happy to have friends or family or when the time comes, carers to keep him company whilst you go out, if only for a walk or coffee then do so.
Not sure how short or long your time will be together, so make it as meaningful and memorable as it can be… for both of you. But you will need help for yourself, don’t assume you can do it all.. you can’t. All my best wishes - to both of you. ❤️
Ironically, a poignant day for me today… his birthday.
Big hugs DL, take care , Bee x
TY - celebrating with a glass or two- be rude not too. 🥂
Sending you a virtual hug.
Thank you so very much dear DL for your wise and kind words, and great advice. Sending hugs and love for your own loss of your dear one.
Hubby just wants to continue as “normal” and won’t talk about the future or let me tell our friends. He says he will live for at least another few years…… Everyone is different and faces life in a different way, He is a very Macho man and very private too. We have been happily married for 60 years and are absolute opposites!
I am so grateful to be able to speak here and receive the wonderful support from you and all my friends here——- and I truly think of you all as friends.
Sending much love and a huge thank you xxxxx
Have sent you a Chat…but agree with PMRpro others do need to know… you will require help..
My husband was very like yours in temperament. Don’t worry - his physical issues will control what happens while you love him and do all you can for him in your own way. When it becomes impossible for you to manage physically you will be onto the next stage. In the meantime it is lovely for you to know that the necessary support is ready in the wings. All the time just know the gift of love you are giving is enabling him to get through this the way he wants. ❤️
Hugs💐x
So sad to hear your news. You and your husband are in my thoughts.Obviously, on top of everything else you've experienced how a piece of shocking news and the mental stress attached can have a knock on effect on your nervous system and cause physical pain and symptoms too.
The pain may well be from a neurological cause, caused by the slow adrenal response to " fight or flight" but in this case , it may well trigger a PMR flare as well, especially if on top of the emotional overload you are also busy doing physical jobs , dealing with family and helping your husband.
That makes this one of those occasions that you would take an increased dose , at least for a few days as a Preventative measure , Stress Day Doses.
Take the dose ( 7/8 mg may well be enough) for 3-7 days until you've got back into a normal pattern and your stress response has settled down.
Then try and drop back down to 4.5 mg again.
You will also find that taking some paracetamol and increasing your fluid intake will help reduce the stress and nerve pain.
If you do take any medication for nerve pain that would also benefit from an increase of dose for a week, the nerve pain medication may well help most taken in the evening to help improve your sleep too.
Try and get a few minutes Me Time a couple of times a day, despite all that is going on, to do some restful breathing exercises and practice going through the pattern of relaxing your muscles from head to toe while you lie down or sit.
You need this to help reduce the tension in the body caused by the stress response which is the cause of the increase in pain.
Take care and please keep us updated when you can and post whenever you need a friendly shoulder and virtual hug, we are all here for you, Bee x
Ahhh Bee—— how lovely to hear from you and thank you so much for your kind and wise words and advice. I shall definitely raise my Pred more tomorrow but unfortunately I can’t take any Paracetamol for another three days as I am on an antibiotic at the moment that says NO Paracetamol! However I have to drink loads of water with each pill —- so that’s good!!
As soon as I finish the course I shall use them again.
How are you? I do hope you are well, happy and content.
Thank you again for your care and good advice
Sending much love and hugs xxxx
If you have an infection as well as the Stress you definitely need Sick Day rules an infection alone will have had you tinkering at the edge of a flare.I'm same as ever, seeming to bump along with one condition or another raising it's ugly head , adding the odd new syndrome into the mix for a bit of variety and trying to keep my spirits up and keep smiling through it all! At least it's never boring 😆😆😆
What a significant challenge ahead of you. Your body is telling you that your pred dose is likely not enough to address the additional stresses you are currently navigating. Please do whatever is necessary to help you through this difficult time. Others have provided wonderful, supportive responses to your post including flare protocols. We are here for you….reach out anytime!
My darling girl I’m in Portugal with family and friends for my birthday.
Will write to you in the morning . Xxxx
Love you even though we haven’t yet met. Xx
You've already received the advice needed for your PMR and so all I want to say is that you're in safe & caring hands here.
I'm so sorry about your very sad news. Just cherish every moment and make sure your husband spends what time he has, living with cancer.
Make every second, every minute, every hour, every day, really count, and really matter.
Don't stop making memories.
Sending much love to you and your family.
I am so sorry for you both Smokygirl. You musn’t neglect yourself in all this. I would be inclined to do the sick day rules to help you to absorb this shock. I hope you have kind friends and family to support you during this challenging time. We will be here for you , you just have to ask. Anything, however small or large. You are going to have to be firm with this lovely sounding macho man of yours. Some things cannot be managed alone. When the time comes he needs to share this development for your sake and loved ones and ultimately his own sake. 💜🌸🙏
Thank you so much dear Jane—- you made me smile! Xxxx
Sungolfer profile imageSungolferPMRpro
3 minutes ago
I do apologise I think I initially replied to PMR pros reply to you :
So very sorry to hear how poorly your husband is - what horrid news to receive. It’s no surprise that your own symptoms have returned and you will get such good advice here and also much verbal and virtual support.
Sending a virtual hug to you and hope friends and family can help give you love and support.
Try to look after you!
So sorry for your news. As PMRpro says, there's nothing we can say but know our thoughts and love are there with you.
Lots of wonderful advice here from this wonderful forum. Do look after yourself, Smokygirl xx
There’s nothing I can do but I hope my heartfelt good wishes go a little way to ease your pain. You’ve had great advice. Thinking of you and your dear husband. Take care of yourself.
So very sorry to hear such sad news. I can’t add to the advice you already have on here about your medication.
We don’t know each other but I really feel for you having to face such a devastating situation, especially when your husband hasn’t yet come to terms with sharing his diagnosis.
Sending virtual hugs and hope you find the strength to carry you through this.
so sorry to hear your sad news my thoughts are with you and your family🙏
How devastating for you, I'm so sorry. You are incredibly brave, as is everyone else on here who has been through terrible losses of loved ones. Keep posting for advice and sympathy. We're all here for you.
Love and very best wishes ❤️. Be brave when you can, we are all thinking of you xx
Sending hugs and very best wishes to you both.💐x
Sending you virtual hugs and support. Been there and truly know what you are going through. You are strong and resilient. Always take care of you because, if you do not, who will?
so sorry, sending you hugs . I’ll let others give practical advice x
I am so so sorry. Don't know what else to say but sending love and courage. This must be such a cruel challenge. Take care of you as best you can xxx
I’m truly sorry to hear your devastating news and my heart goes out to you.
I understand your husband’s wish to keep everything as normal…but it’s unrealistic and unachievable. His selfishness will fall on your shoulders and you’re already carrying as much as you can bear. If you have a sympathetic GP, could they speak to him to encourage him to be more open? Please don’t wait before asking for help you need. These things always take time and you’re already at risk if you’re trying to cope alone, especially if he falls.
You may want to speak to the GP again and suggest the time for some support is already here. At some point your husband will have to accept that he has to compromise to show how much he cares about you too. It works both ways. In the meantime, a huge virtual hug and I’ll be thinking about you both.
You put that so well. I agree totally with what you're saying xx
Thank you so much! However I think that his way is the only way he can deal with the situation. I’ll go along with it as long as I can and hopefully he will gradually see that we both going to need help. He is a wonderful man of 90 years old and still advises on University sites on zoom for Parkinson’s research and students. He will fight until the end— whenever that will be.
Really very sorry, such devastating news to deal with, suddenly everything rests on you when you're not in the best of health yourself. This forum is full of such lovely, empathetic, supportive people. You will find a friend here whenever you need one. My thoughts are that it's very much in your interest to be able to tell people around you what's going on. Give him a bit of time to come to terms with the news, but I would say try to make your OH understand what pressure he's putting on you by not wanting anyone to know and not accepting outsids support. Your instinct is to be kind to him and do what he wants, but the extra pressure of shouldering the burden on your own is going to impact on your ability to support and care for him.
I Hope that your PMR starts to behave itself very soon, and I hope that the many virtual hugs that you have been sent have made you feel a little bit stronger.
I can’t offer any advice but I just want to send a big virtual hug. X💚
So sorry to hear about your hubby. I have been there, my late hubby was diagnosed with stage 3 stomach cancer which was terminal.You are going to need just as much support as your hubby. If he has been referred for hospice care then please take up any help they offer you.
I found Macmillan and Marie Curie charities were very helpful. Macmillan publish lots of free guides which we found very helpful.
I had my hubby at home with hospice at home but he spent the last 4 weeks actually in the hospice as his symptoms were difficult to control.
It's going to be a tough time for both of you but try to build on some family time and time for fun and making memories before it's too late. I am so glad that we did that as even in those last few months I have happy memories to look back on.
I did not flare but then I am on a long term 5mg prednisolone dose. I did however manage to make my back worse trying to lift my hubby.
Lots of people on this forum were very helpful to me during that time and I found that a great comfort.
Thank you so much Sandy. I will enquire about Hospice at home when the time comes. Really helpful advice. And so sorry for your pain and loss too. Hugs. Xxxxxx
very sorry to read your awful news. My brother suffered from multiple myeloma for years, but lived in Australia, so I wasn’t able to help him at all. I hope you manage to cope somehow, it’s too huge to even contemplate how you do it. Try to take ten minutes a day for yourself, & look after your health, too. Sending hugs, S xx
I am so sorry you and your husband are going through this. I can empathise as I am going through the same thing with my daughter. I decided to delay tapering and take whatever I need for pain. So many layers of sadness, try to look for special smiles and moments every day. This group will hold you up. They are wonderful. 💕
So so sorry you are going through this too……. Sending much love and hugs too xxxx
Of course terminal doesn't necessarily mean you will be gone in a few weeks - you can sometimes live for years with palliative care, often longer than misplaced "treatment" and accessing that is essential for living well with such a diagnosis. Get help to apply for all the allowances you are entitled to - as soon as the word "terminal" applies, take advantage. You may not need it financially but believe me, knowing there is some financial help if necessary makes life a bit less fraut, so take what is on offer. If you feel at the end you didn't need it, donate it to a hospice type charity.
In the meantime, being the only carer 24/7 is awful, If someone can come occasionally so you can sleep it helps. They needn't be in his room, just there to hear if he calls. It was months before I slept properly at night and even now, 2 years later, I still wake at any sound, like you do with small children.
While my husband was ill this book:
With the End in Mind: Dying, Death, and Wisdom in an Age of Denial by Kathryn Mannix
was on offer on Kindle and I bought it but didn't get round to reading it until after his death. What a mistake on my part - I learned SO much that would have made that last year so much easier. Above all that how I felt was natural and nothing to be ashamed of. Kathryn Mannix is the mother of the palliative care movement as it is today and has many words of wisdom for us who hold the pieces together for a loved one
Also, he may not be ready yet, but at least think about getting a hospital bed and ripple mattress. They are a bit bulky so may require some rearrangement if you don't have a suitable room as I didn't. But the difference it made when we did VERY belatedly get one was out of this world. The last few days would have been really awful without it. The mattress saves a lot of turning and manhandling which is the last thing they want when weak but is essential to reduce the risk of pressure sores.
Thank you again dear friend, Such brilliant advice and info. Yes I’ll get the book—- I’m afraid we are both getting a bit frustrated with each other…..
As for the hospital bed —- yes again—- when he will agree…………
You are right, the Parkinson’s really makes things a lot worse for him. He has had it for 16 years and it is the tremor driven one.
The blood transfusion really helped today and much improved his vitals.
He actually had some lunch when we returned!
Your knowledge is incredibly helpful —- Thank you from the bottom of my heart ❤️ xxx
Yes - when he will agree - but you can inform yourself now, Knowing in advance who to ask and what will be needed to accommodate a bed makes it all so much easier when the day arrives and it may be from one day to the next, My husband was getting up, sitting at a computer and going to the bathroom unaided on Friday, over the weekend he could no longer sit from lying without me pulling him up, by Tuesday he couldn't transfer to his office chair even with help and on the Wednesday night when the girls arrived he was compos mentis when they walked in the door at 10.30pm and by 1am he was in another world altogether not knowing what he wanted. Had I been alone I would have had no choice other than call an ambulance and have him taken to hospital via the ED which is no place for someone in that state. As it was, the girls provided end of life care at home and he died here. There were no care beds available at the time (Covid) and the Palliative Unit here was in its infancy - the doctor in charge had been in post 2 weeks. We knew her well but even she had no beds to offer until it was really essential, On the following Friday we had had a meeting with her but only I and my daughters realised the stage we had reached and our concerns about the weekend were realised before we had the electric bed. It really pays to be ahead of the game here.
As a PS to PMRpro’s comments, if it’s possible and hospital have said they can do no more, please get your local hospice involved.
They have a completely different approach, no matter the time involved, and if anything like ours, your wellbeing will be considered as important as your husband’s. Something the NHS cannot match . 😊
Thank you my dear friend. The local hospital department for cancer are being amazing and he had a big blood transfusion today which has helped a bit and improved his vitals for the moment. They will test his blood every week from now on. My Mum ended her days in our local hospice and they were very caring, with me too. Xxxx
So sorry to hear this news 😔♥️
My thoughts are with you. You've received some good advice. Sift through and use what is a good fit for you...
Very sorry to hear, you will be in my prayers. Listen to Pro and others who have been through it regarding the Pred.
So sorry to hear your very sad news. Thinking of you and sending love and special thoughts.
Maryx
My late husband was suffering from Dementia along with Neuropathy in his legs and feet from past Chemo treatment. Dementia made that worse and he began falling. He was 6’2” and I am 5’3”. Like your husband he was adamant I not call 911 until the day came that I could not get him up and I went ahead and called them. He accepted that help from then on. Resistance to a walker and caregivers was the same and finally he gave in and was accepting of the assistance. It is humiliating for them and their pride is so important to them. Hope this tale helps a bit. Be strong and take care. 💕
Yes—- he says I am Nannying him! Says I’ve got to stop! It is very hard not to help when he is struggling. I’ve told him it is just love ——but as you say, he is a proud man!!!
Smokeygirl, I can’t add to the wonderful advice already given and can only say I am so sorry for your husband’s diagnosis and the situation you are now in. Sending lots of love to you both from downunder. 💞💕💕
Hi, I can’t add much but you have had such wonderful advice from our dear friends on here who always give sound advice and support. I just want to send my love to you at such a difficult time. Look after yourself too! Sometimes you are forced to go against their wishes and they will come to appreciate your intervention! Hope your PMR settles down soon! Take care. X 💐
I’m so sorry. You’ve been given loads of good advice. My only contribution is for you to inquire about a Hospice. My brother was a proud man too, utterly convinced that he would manage until the end at his home. He was persuaded to go to the Marie Curie Hospice to sort his bloods with infusions and transfusions. A temporary measure. They were so wonderful and his dignity was completely preserved. Pain was managed immediately. No waiting for the district nurse. He agreed to alternatives like reiki! Something he had had no time for before. He just didn’t want to leave. He also became extremely tired which happens. So my advice to you is to take things as they come in front of him while making inquiries about hospices, pain management and get supportive equipment for lifting, baths, walking, wheelchairs etc and to be very practical as to the limitations of your situation. Another word would be selfish, perhaps. BUT you are not being selfish you are doing the best for you both.
Of course I agree—— but at the moment he is totally in denial and won’t agree to anything. Not easy and I don’t want to fight with him!
No no I didn’t mean that. It is so important his trust in you is not shaken. But just find out quietly through the GP and occupational therapy support what is available and how long it takes. You might have access to the Macmillan Nurses who are so helpful. This is support for yourself really
I’m so sorry.
No advice, just wishing that you gain strength and courage from the support of your online family.
So sorry to hear your sad news. We are all here for you x
So sorry to read of your news, nothing that I can really add to the comments already made. Sending best wishes and big, big hugs to you both. 🫂🫂❤️
Changing from Prednisolone to possibly Hydrocortisone 
I need advice please. 
GCA symptoms coming back. Need advice.
Advice please from our experts
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