Hi, my 60 yr old brother was very recently diagnosed with a malignant melanoma, which has metastasised to his lymph nodes under his right armpit, where he has a 15inch long tumour that has grown up to his shoulder. He is single, so has had to move in with my husband and me, he doesn't want to acknowledge what is going on, so I'm the primary carer, I manage his medication, he meals, I manage all meetings as he completely switches off when any medical staff approach. I'm another juggler, trying to keep the family afloat, working full time, trying to remain positive in front of him and other family members, taking him to his many hospital visits...the list goes on, and sadly I am sure this is the same story as many other carers in this community.
My main struggle at the moment is, he has been in excruciating pain since October until the weekend just gone, so whilst living alone he just laid in bed, he has been living with me for 6-8 weeks, and I have tried to make him more mobile, but as the days' progress, he is getting weaker. He is unable to lift himself off the toilet, so this is something I am having to help him with, pride and modesty are no longer a factor. He also falls over, today 5 times I had to lift him from the floor after he had been to the toilet. I'm at a loss on what to do, he can't push up using his legs as they are too weak, his right arm and hand are now swollen due to the tumour and he can no longer use that arm at all, his left arm is incredibly thin/weak. I can use my strength to get him up, not easy but just about manageable but the weakness and now lack of balance as his top right-hand corner is weighted because of the tumour, creating more issues. I just don't know what to do next, are there tools I could use to give him some independence in the bathroom? I can't expect nurses to come in and assist unless I call them the moment he goes to the bathroom. I've been looking online but all I can see are things where he would need two hands to lift himself with, which is a no go. Who are the people I should be talking to, do I hassle my caseworker for the millionth time, is there a particular department at the Marsden I could approach, or is Macmillan Hotline the way forward?
Anyway, that felt good getting that off my chest, any advice would be welcome. Thank you for letting me be part of this community.
Hi and a very warm welcome to the Online Community although I am so sorry to hear about your brother and the challenges you are facing. This is such a challenging and stressful time for everyone involved but I do hope you find the community a safe place to get support and ask your questions.
The New to Community is like our reception desk where we can signpost you to our various cancer specific support groups and other services so can I recommend that in the first instant you consider joining our supportive Melanoma group. This will be a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions, get support and talk with others who are supporting family and friends on their journey.
If you'd like to connect in with a group, you do need to join the group. Click on the Green link I have created above. Then once the page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New (Computers) or + (Mobile Devices). You will then see a dropdown menu so hit ‘Chat’ or ‘Start a Discussion in New here, say hello’ and you are ready to go.
You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.
When it comes to the practical challenges of supporting someone on their cancer journey you may benefit from joining our supportive Carers only group where you will connect with others supporting family and friends
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer and practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing.
Always around if you need further help in navigating the community.
All the very best ((hugs))
