Stage 4 metastic melanoma-BRAF POSITIVE

Hi, I was diagnosed with Stage 4 melanoma in December 24. Bit of background, mum died of melanoma when she was 45, not a sunbather just bad luck so always been very careful. I had first time back in 2020 right in the middle of covid, and was very lucky to receive fantastic treatment at the London bridge hospital, just operation to have removed and lymph nodes removed and after few years regular checks given all clear. Towards middle to end 2024, started losing weight and also went to GP with lump on breast, referred via 2 week wait, had mammogram and ultrasound and told it was a cyst and I had many more in my boob I probably couldnt feel so felt reassured, few weeks later felt lump in my neck, very small and hard, probably size of small marble under ths skin, went to GP and explained family history, my history etc, doctor hadn't reviewed my records and asked what cancer I previously had, told him and where it was and his exact words to me where 'Dear, your neck has nothing to do with where you previously had cancer' and he said it was a cyst, few weeks later went to GP again as I had lost more weight, had lump on my side where my original cancer had been, this GP was amazing and referred me via the faster diagnostic pathway, and within 2 hours the hospital had called me and was booked in 48 hours later, attended this appointment and within 2 weeks had multiple tests, bloods, referred back to dermatology team, cat scans and MRI, attended first appointment with Derm team to be told ths cancer had returned and was in my lung and kidneys, then referred to.cancer centre at guys, had more PET scans and brain MRI. Once all results back found out I have 20 brain tumours, bilateral tumours in neck, muscles around spine, pelvis and bowel, breast,  the primary tumour in my left flank and multiple subcutaneous tumours from my head down to my knees. The only healthy organs I now have are heart and liver! Was put on braftovi and mektovi same day I found all this out and was told I was very close to the point this would have become untreatable. I'm so angry as it turns out the lumps I had dismissed as cysts were all actually cancer, had the lump on my neck removed too which was also confirmed as cancer so feel very let down by my GP! All tumours responded amazingly to the trial drugs and about 50% reduction after months, unfortunately my liver didn't fair too well on these drugs so ended up having to stop and start few times and take high dose steroids, after about 6 months my MRI on my brain showed the original 20 tumours were shrinking or maintaining, but unfortunately w more had appeared so I now have 23 brain tumours. Had stereotactic radiosurgery 5 weeks ago on the brain tumours and started immunotherapy a week ago, so really hoping this works as I can already feel thd tumour on my side again which I had been unable to feel for a few months as it shrunk so much on the trial meds. Surprisingly I haven't had to have any time off work, with 23 brain tumours I have never had a headache, and they arent all small, most of them are but I have a few that are between 18-28mm, some of the tumours in my body are also what I consider to be quite sizeable, so quite surprising i feel okay, even the consultants in both teams are surprised by this. I'm about 9 months in now and I feel really quick lucky so far, I've just felt bit tired at times, i had one bad day after the immunotherapy, I've been able to continue working, im currently on a 5 day holiday on the east cost with my family and have next immunotherapy in 2 weeks. I really do feel like I need to keep myself busy as having too much time to think is when I have my down times. What I struggle with is, should I carry on as normal or should I start planning for what I think is the inevitable, I feel like carrying on as normal is the way to go as normality stops everyone worrying, but my mum died very suddenly, actually 17 days after diagnosis and all those days were spent in immense pain in hospital, but this was 24 years ago and the care now is massively different. I have asked the team at the hospital to let me know the minute they have an inkling of timelines or no more available treatments, the immunotherapy is actually my last option so its also quite disappointing I couldnt stay on the trail for longer! It definitley messes with your head as I dont want to spend ths last 6-12 months of my life working, but also you still have to live and keep a semblance of normality while you can. I have everything to live for, mostly my 2 children and an amazing family. The worst thing is seeing how crushed they all are, particularly my dad and sisters as we all went through this with my mum, my poor dad looks crushed, but I am actually a very positive person and I do think that helps and I will fight this with all I have and hope that I get a few more years on this earth. 

Bit of a long one to start with, but I hope the fact I am absolutely riddled with this awful disease and still live a pretty much normal life outside of hospital appointments maybe gives someone else in a similar situation a bit of hope and makes them realise that life can go on. Wishing everyone else on this forum all the very best for a positive outcome