Hi all , 

I'm not really sure where to start or what I'm hoping to get out of this post ... its not to worry anyone else but I just need to get it out 

In 2021 after a year of sending pics to our gp she finally referred my husband to dermatology . They looked at the mole and said it was nothing , I had to show her pics of the Yr previous before she sighed and said well if I remove it I'll have to test it ...well yes plz do 

I can't remember how long a couple of weeks later we got the phone call to go in , stage 3b nodular melanoma, they cut more out for testing and then he had to go for wide incision and we were told clear margins ..

I understand the nhs is under extreme pressure but he was examined once in the following 2yrs when he was ment to be seen every 3mths 

Fast forward to March this Yr my husband takes himself over to a&e with a pain that came and went in his stomach ( he has an ileostomy bag on since 2008 due to colitis) they scanned him and told him they suspected lymphoma 

We had to go private to hurry an appt as it was going to take weeks with holidays etc .. in April they took what they could from the remainder of his small bowel and the small tumor , he came home from hospital and was not himself at all ..childlike nearly , I phoned the gp everymorning for 4 days and it was only when he was in with nurse I demanded our gp see him and to stop brushing it off as the anesthetic effect ..she saw him and sent him over to a&e with suspected stroke 

Hours later we had an amazing doc break the news that he had a brain tumor ,

The next morn another doc came in and told us the bowel was melanoma not lymphoma and they suspect it has spread to the brain 

Surgery on brain in May to remove the tumor came back melanoma as well 

We then got an amazing oncologist who offered immunotherapy,  told us if it didn't work he would have 2-4mths 

He had a bad reaction to immunotherapy and spend nearly 3weeks in July in the hosp 

Now we they have found 2 new tumors in his brain one they never told us about as it was so small and the other one has trippled in size 

Immunotherapy has not worked at all in the brain and the rest of his body has had a mixed response 

They discussed him yesterday for radio therapy but want us in to discuss further next week 

I'm so afraid he's only 48 and in last 6mths our lives have turned upside down  

We have 5 children 

So what I want to say if your concerned push for appts , push for answers...they told us he had clear margins and then said it travelled through the blood vessels not the lymphnodes ? ...I'm cross immunotherapy wasn't offered even as a mop up 2 yrs ago just incase ... we are so lost right now and its very hard to find someone or a family that have went through similar 

We are dealing with inlaws who think there's nothing wrong with him and telling him that so he's questioning himself why he's so tired and feels so unwell 

Atm he's home on high dose steroids but the amazing effect of them is wearing off 

Feeling lost , scared and so alone