Over the three and a half years since my diagnosis of PV, I have found great advice, comfort and a sense of community here. Lately, I have not posted or read as frequently as previously. I am doing okay, taking hydroxy and keeping myself as well as I can. In September my husband was diagnosed with multiple myeloma, currently having weekly chemo, in the hope of a temporary remission. He has always been my great support but now our roles have changed and I feel more like the "wounded healer". Suddenly I feel very alone. My only family member is my daughter who lives a four-hour drive away. I feel that for her, it is a case of out of sight and out of mind and understandably her husband and children are the important people in her life. We have always driven to see them but now my husband is not able for the journey. I know at the moment, I feel very raw, vulnerable and sensitive and so aware of the lack of real empathy among people in general. There are very few to whom I can open up about my feelings. With some, I can almost see the cogs turning to formulate a response of their experience, someone known to them (often who has died) or the final insult of a "chin up" remark to change the subject and take control of the conversation instead of listening and hearing.
So there, I have had my little rant and hopefully not ruined anyone's day. My husband has looked for a forum for multiple myeloma but it seems there is nothing as positive and helpful as we have here. If anyone has info that would be helpful.
Thank you
Warm wishes
Written by
Fionnuaghla
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Sorry you are down. I think we all go through this, it is difficult. Some days after a nice rest and having a calmer environment! I feel better. I am in a retirement community and see many who are worse than me- then I feel gratitude. I wish you better days.
Hello Fionnuaghla - so sorry to hear of your situation. This forum is absolutely the place to hit with a rant (I know it propped me up + kept me going over a rubbish period last year).
I think many of us on here can feel very alone at times - you will be feeling emotionally and physically battered having to keep everything running, and I can only hope that the chemo will slow any progression for your husband.
Please grab any and all support resource available, be it your GP, Macmillan or other (a post recently mentioned Maggies centres - I do wish I had one near).
I’m so sorry to hear of your husbands diagnosis, and its understandable impact on you. It must be a very emotional time for both of you. It’s awful when our world as we know it comes crashing down. It can’t be easy finding yourself in this role reversal of carer combined with your own health issues too. It might be worth having a chat with your GP. I hope you find some form of support in your community. If not, you can always share your thoughts here. This forum is special in its support of members.
Maybe Maz might know of a positive forum for Multiple Myeloma patients.
Hi. Sorry to hear about your husband. This forum is great support and I hope you can find something similar for your husband. We all need to rant and this is a good place to do it. Hope you find some local support. Jacquie x
My heart goes out to you. I’ve read your post a few times and have ‘listened’ with respect to your words and feelings. Sometimes the best thing to do is just know someone else out there cares. I do care for you and your situation right now. Right this minute I’m thinking of you and sending love and strength. X
Hi Fionnuaghla it must be hard for you to see your husband unwell and going though treatment and what with your daughter living so far-away we hear on this forum will always listen and try to support you do try to rest yourself but I bet not always easy for you has others have said ask GP if he can help find a group for your husband or Macmillan are a good support group sending good wishes and do keep sending posts Poppy
In answer to your rhetorical question...sadly, my house has two cancer-sufferers living in it 😔
My husband went from fit and healthy on the morning of May Bank Holiday to (by that evening!) having a very aggressive Stage 4 brain tumour and is now on palliative end-of-life care. I am trying to care for him at home as per his wishes, the NHS support has been amazing, but yes...with the fatigue and other side effects our illness brings, life is quite difficult at the
moment. All this on top of losing my son-in-law in a sudden death last year (he left two devastated little boys, 5 and 3 and my poor daughter) followed by my elderly father-in-law. Life is a real struggle but we have no choice, sadly, but to go with the flow and hope that life improves. Chin up xxx
Thank you, Mary. I hope you can take comfort from having your family around you. Also, I know it is really hard not to think about the future and what "might" be. Sometimes the energy that goes into worrying what might be is really needed now. I wish you well and will be thinking about you.
So very sorry that you have been faced with this. It can be very lonely being the carer, and a huge challenge when your own health is not good. I do hope that you find the care and support that you need, and the strength to see you through.
I am so sorry to hear how much you are going through. A very dear friend is going through the same as you - not that this will be any consolation to you - I simply want you to know you are not alone. Has your husband tried here on Healthunlocked for multiple myeloma support? Love to you . Lesley x
Hello Fionnuaghla, I am so sorry to hear this news about your husband, it's so horrible for you both. Just remember that we are all here for you at any time that you need some 'virtual' support. I have had a look at the Myeloma UK website and they do offer support in lots of ways to people with myeloma and carers, they have a discussion forum, a separate section for support for carers, a phone helpline and you can also email any questions through to specialist nurses, so it is worth having a look, for both of you. myeloma.org.uk/help-and-sup...
they also have a list of local support groups you can attend.
Thank you, Maz. Roger has tried to register on the myeloma site but because I am here on our shared email address, it is showing as already registered. Recently because of a similar technical issue on another site, I have now got another email address which I can use but cannot figure out how to change my email address on here.
Thank you, Maz. Of course, it is. He had been looking under Myeloma within Health Unlocked in the hope of finding the wonderful support I receive on here. We have now linked in with a local group more focussed on lymphoma but still helpful. Thank you again.
I am 75 and have ET, diagnosed six years ago, and my wife is in a nursing home with terminal Huntington's disease. Before she made it to the nursing home, I was her home carer for five years. Our wonderful retirement plans went out the window long ago but we were(are) too busy savouring every moment to be bitter. We have been cheated out of life that ought to have been ours but now, as time goes on, I’m not so sure. It’s true there are things we wanted to do, and haven’t done. But then, there are things I’ve learned, things I didn’t know before, and would never have discovered otherwise. I never incorporated them into any of our plans. I never thought they were important. But looking back, I find I think they are. I found solace, railing against the injustice, by becoming secretary of the local HDA. Our former secretary, Hugh Marriott wrote a wonderful book entitled, "The Selfish Pig's guide to Caring", which helped us over our worse times. The ET Hydroxy is a bugger so I have been known to cheat on the dosage, much to my haematologist's annoyance!
I’m so sorry to hear of your present situation. It sounds so very difficult. In the US, if you are 65 or more, you are entitled to have a caretaker come for a few hours a few days a week to assist you. Maybe there is something similar over there. I’m sorry that you’re daughter doesn’t live closer, so you need to find some assistance elsewhere. And, don’t worry about your “rant”. That’s what this forum is here for. We are all here for you.
Hi Fionnuaghla, just wanted to reach out to you and say that I totally understand your situation. I'm in a somewhat similar one myself as I have PV and hubby was diagnosed with advanced bowel cancer last year. Please reach out for support from the organisations that help people in our situation. I didn't until the nurse practioner at my gp surgery referred us to a Macmillan nurse. Helped me enormously as she was able to talk my husband through some difficult topics. I hope you can find something/one similar. In the meantime, I hope it helps to know that others here on the forum are thinking of you and wishing you well.
Rant all you like. I think I would too if I was in your situation. Family is so important I have a very elderly mum a son at home - forever most likely, a son 5 miles away a husband 4 hours away - home weekends only and then a sister nieces and nephews scattered all over the country. I have to pay someone to do my garden yet I see my son helps his wife’s parents who are years younger than me and fitting fit!! and part of a large close knit family.
Life isn’t fair but when I read about people in your situation it makes me prod myself.
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