My dad has been living with a rare form of cancer. He initially had Ocular Melanoma 20 years ago and and as a result he lost his eye, he had check ups for 5 years and was given the all clear. Then out of the blue by accident 4 years ago we found he had advanced Ocular Melanoma in his liver, lung and lymph nodes in his chest.
He’s has been attending Clatterbridge for the last 4 years for a clinical trial and has been stable for all this time. Then again after having an MRI on his throat (for something else) they accidentally found that his cancer has spread to his brain and has now been given a terminal diagnosis of just a few months.
He had started immunotherapy however his iron, zinc and potassium level dropped very low and as a result his immune system started attacking his skin and his has been covered in skin blisters, itching and burning skin for the last few weeks. This is finally under control by a very high dose of steroids. As a result he has had to come off his immunotherapy therapy until his steroids are finished which is about 6 weeks.
Due to Covid we are not allowed in the hospital with dad and we have little information on what effects the cancer in his brain will have on him. When you search online there is very little as it’s a rare cancer.
As a family we are devastated and finding the last few weeks so tough and I feel like I am grieving him whilst he is still with us. The funny thing is apart from the recent issue he’s has with his skin he looks fit and well, still manages 6 mile walks, he does tire easy but in himself he doesn’t feel unwell.
I am trying to work full time, look after my 5 year old, support my husband (lost his dad a couple of month ago to COVID) and be there for my dad and mum who is not coping well at all.
if anyone has any advice on how to get through this it would be great.
sorry for going on a bit, feel a bit better for getting that off my chest.
Thanks x
Hi Summer2021
so sorry to hear what you and your family are going through. Sounds like you have a lot on your plate!
You don't say what kind of brain cancer but you might find some more support or info in our https://community.macmillan.org.uk/cancer_types/brain-cancer-forum .
I can only comment from my own experience here. My husband was diagnosed with a terminal brain tumour (GBM4) last Sept. He was 50 at the time and a fitness freak (marathon runner). Over the past year, as a family we've been on a roller coaster ride of emotions. My kids are 21 and 23 but have no experience of losing anyone so this has hit them hard, especially my daughter who is closer to her dad. I'm still working fulltime and trying to juggle all of this. Best advice I can give you is to take it one day at a time and take time for yourself. Looking after yourself is a necessity- take time to go for a walk, go to the gym, sit outside with a cup of tea/glass of wine, read a book - whatever it takes to help you recharge your wee batteries. My coping mechanisms include going for a walk after work each day, I write/journal and I've taken up yoga. If I'm feeling really energetic, I'll got for a 5km run before work.
Talking/venting helps too and there's always plenty of support on here.
Stay strong, Hang in there
love n hugs
Wee Me xx
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