Hello everyone, im new to the community and just wanted to introduce myself, my husband was diagnosed with Neuroedocrine Tumours just before lockdown and its been a hell of a roller coaster ride! Apart from the shock of the diagnosis (he wasn't sick at all!) Its been a hell of a journey for me, at my worst I was suicidal, but I managed to come back from that and now i accept im alone for this. My husband's team dont include me in anything and either they are just ignorant or its a covid thing, who knows. He began oral chemotherapy in lockdown and they just sent him home with all these pills, I had no idea what I was supposed to do! I was terrified he was gonna die, by round 3 he had a toxic reaction and collapsed, I called an ambulance and couldn't go to hospital with him because of lockdown, no one called me in the 5 days he was kept in. I feel like every step of the way im excluded. I was allowed to attend one appointment recently but no one spoke to me, they just talked to him. I feel so isolated and it seems like its never going to get any better! I get pretty angry with the nursing team because of this. I try do hard to be polite but I do struggle with it. I know there is no one rule on treatment but I look ahead n just see more of what we have had, me being kept out of the loop and the fact my husband is going to die of this disease is making it all worse. Any other carer have this? Or is it just me? How did you get help? Or some improvement from the medical team? Thank you all for listening x
