Hi all
Posted a couple before and come here again really to get some advice.
Im 49, not even 50 yet yup its a hard life :-)
Anyway joking apart I have had, well initially a lot of support but since covid the last time I spoke to the medical team was around 2 weeks ago and the contact has been minimal to say the least. I started chemo and got 1 treatment but then put on arbiterone (or however its spelt)
I am working from home and it has been full on since the lockdown. My job is overseeing 15 workers who deliver home support across a wide geography. With the lockdown it has caused some dilemas and lots of changes resulting in the staff needing a lot more support and a lot more work. People may just give up work due to a diagnosis however we have 5 years to pay the mortgage off so I cant really afford to just jack it in and really, well I feel to young to just retire.
Every time the health team call it lasts about 5 minutes and nothing is covered apart from a resupply of meds and the results of blood tests on a fortnightly basis done at the local GP and not at the hospital. The LFT's are coming back as good but I have put on weight from about 80kgs to like 86 and cant seem to shift the beer belly and think I'm starting to grow a nice pair :-)I have had 1 PSA test since I think March. This last one was positive as it had reduced from 38 to 0.2. However shortly after that I kind of felt that the hormone treatment is losing its effectiveness. I was first put on tablets that stopped my going to the toilet however once I got the 3 monthly injection, it all stopped working within a month.
You could argue that I should be chasing up a consultant of some description however I have not even had that priveledge since I was diagnosed. The nurse is a good person and has been helpful but again, its very little and starting to feel its the box tick exercise to be honest. Although I have worked in social work/care care for a long time, I still find it difficult to actually explain things to professionals so I start to feel its like well he doesn't shout so he will be ok, which is either my perception or what is going on, who knows.. I'm feeling like that mechanic who fixes everyone else's car but his is off the road :-)
I know a lady, whom I bumped into recently who has a blood cancer. She told me that she gets regular support and her treatment is fully maintained. She recieves regular calls (including her consultant), which makes me think there are some inconsitencies going on. I actually said to her do you think you get this as you are female. Excuse the equality moment but that's how it feels.
I sent an email informing that I had pain staring in my back at the start of June and I only got a scan last week. Problem I feel is that at my diagnosis it was a very aggressive cancer and feel that the pain is getting worse. I had to call my GP to get pain relief as there was nothing coming from the care team. But it seems to be one of those hurry up and wait situations.
No one owes me anything and time fortunate to have the NHS as they have kept me with a decent quality of life so far.
Is anyone else having similar issues around support or am I just over reacting. Again spending time in care, no one on my 'watch' got anything more or less and treat everyone based on their needs, simple as that and is actually quite simple to do. Am I missing something...
Thanks a lot for taking time to read this as Im going off my nut really and find it difficult to actually demand anything. So any advice at all will be hugely appreciated as I really dont speak to anyone about my health really and feel that Im getting very little support. And do I really have to wait, with what I assume another 3 weeks until Im consulted about the results of my scan and if my cancer is aggressive well that I think will be an issue.
But on a happy note ive manged to quit the fags, had a bar lunch in my garden then went to the cliffs near my house for rock climbing today so its not all that bad really!
Anyway enough said and I could go on but this is the longest email in Britain lol...Well rant over and thank you so much listening to me.