My grandad was recently diagnosed with a melanoma in each lung and a large melanoma in the front central portion of his brain.
Two weeks ago I rushed over to see my grandad because he was really confused and this was not normal for him. I thought it was a water infection having seen my nan (on the other side of my family) suffer with a number of these. He steadily got worse and in the end we had to call 111, the paramedics thought he was having a stroke but this didn't track with 80% of his symptoms so was giving the drs on the specialist stroke unit nearby a bit of a conundrum. On the way to the hospital he had a seizure in the ambulance and had to divert to a closer hospital, once there they did some ct scans which showed a mass on his brain. He was transferred to the local cancer hospital instead of the stroke unit and was there a week before they discharged him. I have moved in with him to help look after him as I was the most socially isolated person in the family and therefore the safest option given the current pandemic.
Since moving in we've been getting on well, I'm sure for grandad to accept his granddaughter moving in after 30 years on his own it was a shock but in grandads words I'm "not annoying to live with". We've got carers coming in twice a day to basically just sort out his meds but grandad is so stubborn that he does most things himself anyway.
He's had a good quality of life for the most part over the last week or so but he seems to be deteriorating so quickly in the last 24hrs, he's unstable on his feet and walks as if he's had a stroke (no offence intended but don't know how else to describe the walk), this evening he has slept for most of it and when he is awake his speech has also been off (almost like his tongue is swollen and can't form his words right).
We only spoke to his specialist Dr yesterday (two weeks and a day from his hospital admission) who told us the results of all grandads scans and how things stand. He had a melanoma in the lung removed during a radical lobectomy back in September but he now has another melanoma close to where his original one was, the melanoma in his other lung is large apparently. The worst part is his brain, he has a melanoma in the front part of his brain as I mentioned before but it's too large for radiotherapy and the neuro Drs deemed the operation too risky given some of grandads other health problems. They have offered immunotherapy which grandad agreed to but then says he doesn't want the side effects, he is getting more and more confused including forgetting who people are, forgetting his sons name and the like. He's told me himself he hasn't taken in half of what the Dr said in the call.
I've been trying to avoid looking at the Internet because I understand that can be a rabbit warren of terrifying information which may not even apply but I have looked at the potential side effects of the proposed drug. Grandad already has some of the side effects anyway and he has poor kidney function and heart arterial fibrillation. I have to think that the Drs wouldn't have proposed the immunotherapy if there was no chance of it working at all, and that they have considered all of grandads other health complaints before proposing the drug they have but what if all these other issues and symptoms mean that the drug just isn't compatible with grandad?
How do I know if I'm overreacting when he shows a progression in his symptoms ie the unstable walking and slurred speech? I'm a worrier by nature and hate to see him struggling so much but he's a proud man and I don't want to take away his dignity.
How do we help him make an informed decision on treatment when he doesn't seem to understand everything?
I've also noticed that his personality seems to be altering a little, he has come out with a few bits in the last few days which just aren't what my grandad would normally say. He's also very content for me to wait on him which I don't mind doing and think he deserves to be waited on a little after all he has done for me but again it's not his normal personality to sit back and let others look after him.
My family are looking to me for updates on all things grandad related but how do I tread the fine line of maintaining grandads dignity but keeping family in the loop?
I'm sorry this is so long and if anyone has any advice I'd truly appreciate it.
Hi and a second welcome to the online community
I see that LoobyLou49 has already given you some great advice including joining the carers group where you can share your worries with others who are caring for loved ones with cancer.
If you'd like the opportunity of speaking to others about immunotherapy for melanoma, could I suggest that you join us over in the melanoma group where you'll find lots of people who are having this treatment.
To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.
Melanoma isn't a form of brain tumour but the brain, along with the lungs and other organs, is one of the placed it spreads to. You might find downloading this booklet about Understanding Advanced Melanoma useful. It explains what it is, along with treatments available including immunotherapy. Click on the picture to read it online.
You could also go through the booklet with you grandad to help him understand his treatment options.
When you have a minute it would be really useful if you could pop something about your grandad's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
I'll keep an eye out for you in the melanoma group.
Sending a supportive ((hug))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
