[adelaide56Participant]

Hi

Has anybody found it difficult to deal with their partners behaviour?  I’m sure I’m not alone but my husband is very reluctant ro communicate with me or anyone else for that matter.

His myeloma returned after a stem cell, giving him 14 months remission.  He was tried on Carfilzomib, but sadly it was no good for him and it was stopped after two cycles and lots of hospital treatment and blood transfusions….this was very worrying and stressful for him and us as a family.  He is now on steroids and Lenilidamide which have worked well ivet 2 cycles and brought down the para protein levels.

last week he was told that he would not be suitable for a second transplant due to the short remission gained by the first one…..also because of his other health issues, heart problems and prostate cancer, both of which are no worst than last time…they also said that it had a bearing on it that he a was 2 years older…he is 64.

One of my problems as his partner and carer is that his moods are very changeable.  He doesn’t like to discuss anything with me and can be very dismissive of my needs.  I understand this as he has a lot to contend with, but he is being quite unpleasant to me at times and blames everything on me.  He won’t tell me if he feels unwell and when he says he feels unwell he won’t go and rest as he says he doesn’t sleep during the day or he just denys that anything is wrong.

It’s so hard to deal with this every day…I have changed my entire life over the past 3 years or more to help him through this, but I feel at a loss now as to how to deal with everything.  I went to a carers group at Macmillan, but to be honest I found it difficult and not helpful as everyone needed support and I am really not in a good enough place to offer that to others at this time…

thanks for listening….😢

[mrsbParticipant]

Hi this sounds so familiar yet different – my mum has myeloma and I am her carer (I’m 52- mum 79)but my dad is being so difficult and seems jealous when we are concentrating on her and gets so cross with her for being tired, slurring her speech etc and then has symptoms (genuine health issues but why make a fuss of them)to take attention of her I think it is his way of trying to cope and not show his true emotions. When mum was really poorly and diagnosed with less than 12 weeks he was devastated and as she is still fighting after 12 weeks it’s like he is in denial and given up being nice all the time as all will return to normal . I know he doesn’t mean it but he is hard work when we have enough to cope with day to day. Keep strong and don’t judge others on our own standards, rise above it, share your feelings ,don’t feel bad having negative views just because someone Ill and take care of yourself. Give him space and tell him how he makes you feel then follow up with nice gesture to show no hard feelings. You are obviously doing a wonderful job and need an outlet for these feelings which are normal xx

[adelaide56Participant]

Thank you Sarah

It helped me to have a little offload….I think your story shows how very difficult this cancer (or indeed any other cancer) is for everyone involved.  Families, partners and most importantly, the patient.

The range of emotions we all have to deal with takes its toll.  I truly believe that communication and understanding is the key and I continually try to keep the lines open.

I appreciate your answer and  your advice..thank you

best wishes to you and your family

[emsieParticipant]

In a word…yes. Think it is the steroids that they take that causes it. Not always easy to be thick skinned though is it.

 

[adelaide56Participant]

Yes I think that’s right….he has had the steroid dose lowered and I think this has helped, also we have had a good chat about things and again this has helped too.  Onwards and upwards!

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