A place for people affected by brain tumours or brain cancer to support one another...
Hi all, looking for some support/advice from people who understand the journey I’m currently experiencing. My partner aged 32 was diagnosed with terminal grade 4 glioblastoma in 2016 & given 9-12months to live. Whilst physically he is thriving even after undergoing his third craniotomy a month ago. He is struggling mentally, he has financial difficulties as it seems DWP stop his benefits with no pre warning - this is bringing tremendous stress. His mood swings are leaving me on egg shells & some days he just wakes up in a bad mood, always directed at me. He shouts at me & says some really hurtful things. I am trying my best to support me & don’t argue back I just let him vent at me, however it’s grinding me down now & I just feel like I am failing because he isn’t happy.
It’s so good your partner has outlived his prognosis but I’m sure this has come at a cost. Living with a unpredictable terminal illness brings a feeling of having a lack of control over the future and in my experience this tension builds up from time to time and especially after a new operation. Combine that with financial problems and dealing with bureaucracy and it’s understandable that his fuse will be very short indeed, however that doesn’t mean you have to absorb all the flack. As cancer patients if we are not coping it’s our responsibility to reach out for support when we need it. It’s not a sign of weakness to ask for help so I would encourage him to find a outlet for his worries. I doubt very much this has anything to do with you, it’s just you are the nearest person to him and he trusts you.
That’s worded so perfectly, we are so grateful & happy that he’s outlived his prognosis but that prognosis does still keep us & particularly him on edge. He’s angry someone gave him that 9-12months & he’s still here not really knowing what his prognosis is or if he/we can plan for the future. The tension has definitely over boiled since his most recent surgery.
have you done counselling or anything yourself? This is something we have been speaking about in last few weeks & I feel no harm in trying but I don’t know if he’s fully ready to talk to someone or admit he is struggling. Of which I understand.
Dear willow, I have not had counselling myself, I think as a women it’s easier for me as I’m used to expressing my emotions as my husband will testify. Prognosis in the era of modern medicines and techniques doesn’t have the meaning it once had, all doctors have is statistics and your partner is not a statistic. I think he has probably been in a state of suspended animation all this time and that uses up a lot of mental energy. Coming to terms with not being able to get answers to fundamental questions like do I have a future is very hard but you can with the right help find a sort of peace and live a different but meaningful life. I think this is something you can explore together, it will be a painful conversation but cathartic if he can admit his fears for the future. I am lucky as my husband of 36 years and I have no secrets and this has helped me live the best life I can, so I can say from experience talking things through does help both of us.
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