[susieundiesParticipant]

Hi all,
Newbie here. I’m undergoing chemotherapy and am really struggling mentally. I am nearing the end of what they predict I will need in terms of chemo, before I begin radiotherapy. I have two week intervals between cycles and it is just not enough. I have started finding I am getting almost PTSD type attacks where the thought of any appointment, even if it’s just a phone call, gives me a physical reaction to taste the meds as I do during treatment, and my body physically feels as bad as it has at my worst reaction. I know it’s psychosomatic but despite my best efforts I am finding it is giving me huge anxiety at the thought of more treatment. When I spoke to my consultant and my nurse specialist they essentially tried to bully me into it with the “we will see you in two years when you’ve got cancer again and all wish you had pressed on a little more” and told me they misjudged me and thought I was robust and confident but I’m not. I just don’t know where to turn or what to do. Any tips on keeping mentally strong would be incredible.

[mulberryParticipant]

Hi Susieundies, this is a most stressful cancer and really not easy to deal with during periods of active treatment. If you are fortunate (like me) it all will be worthwhile and you will have a long period or long periods of good health to come. When I was at your stage I honestly couldn’t anticipate feeling as well as I do now.
The things that I found helpful were membership of a local support group, which has WhatsApp contact during these covid times, complementary therapies such as massage & reflexology from a cancer centre, counselling also from the cancer centre (can be by phone) and most helpful of all, yoga for cancer patients (now done by zoom).
It is perfectly reasonable to feel highly anxious at the moment, other people with myeloma will understand how you are feeling. For me it helped to find ways of regaining some control. If you haven’t already, ring Ellen the myeloma nurse at Myeloma UK. I found her very helpful.
Take care, and have hope that this phase will pass. Hugs to you.

[ree2112Participant]

Hey Susieundies. I was lucky with my chemo but then again, I didn’t think of it as chemo as it was just an injection in my vast tummy… I had Bortezomib (Velcade) with Dexamethasone and Thalidomide and treated it as more meds to make me rattle. I had 4 consecutive cycles, didn’t have all of them complete as I suffered with water retention and lack of breathing but I got through. There were tears. quite a few, but I kicked myself up the backside and carried on for another day until the tears come back. I used to dread going for my injection for fear of being admitted into hospital again. That was back in the summer. I got through it and celebrated my last injection (Thursday 17 December 2020. Not like that I remember it haha). All the nursing staff were lovely. So is my consultant and specialist nurse, unlike yours by the sounds of it. We all seem to be robust until this hits us like a hammer in the face. Have you spoken to anyone? Are there any groups local to you? You can pm me if you like. You’re not on your own xx

[davidainsdaleParticipant]

Hi Susieundies

Sorry to hear that you are struggling with treatment, it can be a real slog at times.

I would certainly agree with Mulberry’s comments about the value of finding a local myeloma support group.

Our group here in the North West is very active, patients and carers both find it very valuable talking to others similarly affected, particularly if they are at the same clinic. Even to find someone with a listening ear can be a big boost.

Hope this helps
David

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