Hi everyone, just found this community support after looking at the Macmillan website.
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 and welcome to the Online Community but so sorry to hear about your dad’s prognosis.
A terminal cancer diagnosis in the family can be very challenging but talking with others who are walking the same type of cancer treatment journey will help you navigate this very difficult time.
The New to Community is like the Community Reception area and as there are many cancer types and experiences so likewise the Community has many support groups so can I recommend you start of by joining our supportive Carers only and Supporting someone with incurable cancer groups where you will connect with others supporting family and friends.
Navigating the community will depend on the device you are using. To join a group just click on the green link above then scroll down and choose 'click to join' or 'join' on the page that opens.
You can then introduce yourself by putting up a post by clicking on ‘New Thread’ or ‘New here, say hello’ then hit the box with the X on the top right (phones).
You could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, support, financial guidance or just a listening ear.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
All the very best ((hugs))
