Hello. Look I don’t want to be an old misery but hubby and I are struggling now. I’ve had to ask for help this week from Macmillan as I don’t seem to be coping. Hubby is so down with the continued pain and his ability to do anything without pain. I feel so helpless and as if I’m letting him down but after two years I’m just worn down and out. Bless him he was so active and sociable and now he’s in bed almost 24/7 watching me doing everything and it’s so upsetting for him. We’ve managed to get an appointment next week with the palliative care team and are worried what that means. Does anyone know what they will do please? I thought that was for the end of life but I’m assured it’s not but with three appointments next week with three specialists about the Myeloma, new endocrinology issues yet to be confirmed and now palliative care my head is spinning. The endocrinologist described hubby as emaciated which upset us both so I’ve been getting him some new clothes to replace his baggy ones and so this morning I took his old stuff to the charity shop. I feel like a bitch doing that, it’s as if I’m writing him off. I’m not but he was in uniform all his working life and has always liked to be smart hence the new clothes that fit! As for me I’m just dragging on old jeans every day and un ironed T-shirt’s just to cover myself and I’m losing heart.
Oh I’m sorry for moaning. I know people are worse off than us but I’ve had enough now and I’m tired. Thanks for reading. June
Hi June, so sorry to hear the struggles you are both having - this all can build up and truly can get you down.
Well done getting an appointment to talk things through as this will help you put some order into place.
I have no first hand experience with working with palliative care but it’s not all about end of life care.
I have one friend who has incurable cancer and they get great support.
If an illness can't be cured, palliative care makes sure that the best pain plan is put in place and he is made as comfortable as possible. Managing the pain managing and other distressing symptoms will help a lot..... It also involves psychological, and social support for you all.
Lets look for other with more first hand experience to come along.
Remember you can get help now by using our various Macmillan Support Line Services - call them on 0808 808 00 00 fir Emotional Support, Practical Information and Clinical Information mostly open 8.00 to 8.00 but check the link.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
DearWill6 June, it’s jane here, I was so sad to read you are both struggling so much at the moment. I think it’s a good idea to engage with the palliative care team. I have an appointment every couple of months with the palliative care doctor at my local hospital, he is fantastic and as I have another illness apart from myeloma he acts as my advocate and liaises with my various doctors, they do much more than end of life care. I also attend a crafting class at my local hospice once a week, it’s mainly for emotional support, but both my husband and I can get access to many different therapies there and lots of advice. We all get to the end of our tether at times so don’t feel bad about it. Myeloma can be a very frustrating as it’s a a disease of relapse and recovery which is hard work.
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