It is nearly a year since I had an unexpected (many years post menopause ) bleed on holiday. This was diagnosed by my GPs initially as a UtI and then a caruncle and treated accordingly. When I got another bleed I went to Urgent Care centre at local hospital where they found blood in my vagina and I was referred to Gynae clinic for a TVU. This identified two uterine polyps. Assessed as benign and recommended a hysteroscopy. The surgeon told me on the day that the op to remove them was successful.
In fact untrue as second larger polyp could not be completely removed and biopsy showed it to be grade 3 serous. This was now 6 months after initial problem and I was more than a bit concerned when noone seemed to want to give it a stage . Eventually said it was probably stage 1a. I had the operation in November 2019 - everything removed - and thankfully it was staged as 1a but grade changed to grade 3 clear cell. No other signs but as was grade 3, radiotherapy wasn't recommended ( vaginal brachytherapy. ) Which I had in January 2020.
Had one quick 
ck up since when everything was found to be ok ( although continue to have minor bowel isI?which may be residual from hysterectomy.). Hospitals in the group have system where you can enrol to read your records on line, which I did. So I know my GP practice has been receiving regular updates. I also wrote and told my GP (female) who I have been with 25 years and get on well with, at time of diagnosis. Never heard back.
In fact I have had no communication at all from the practice about my cancer. Until last week when a letter arrived saying we see you have had cancer, if you would like to talk to anyone here about your concerns please contact us as we are anxious to support you. Oh yeah!. As you cannot ever get through on phone and all appointments are at least 3 weeks out, when they are open ,(surgery now closed for all except telephone appointments ) chances of getting through and speaking to snyone are slim to vanishing. Meanwhile it is 11 months since I last contacted them to notify them I had cancer and this is first time I have heard from them since.
Just dropping in after a bit of a break!
My GP made no contact with me whatsoever after ordering the initial tests from which my diagnosis was made. I had to contact the surgery for staple removal and treatment of a wound infection. I can honestly say I received absolutely no support whatsoever from that direction! However, I am constantly pestered regarding an annual asthma review which I don’t need.
In all honesty, changes made by the government have made the day to day job of being a GP so unattractive that lack of staff is largely responsible for this, in my opinion. I believe that most GPs would rather be able to offer more support but are simply unable to under the current circumstances, which I think is sad for both patients and doctors alike. This is where the Macmillan site and online community is so valuable.
Yes, Lesley, you should have been fast tracked. Working in the NHS, I can say that you may still have been so, but the target wasn’t met, although I doubt that the extra week would make any significant difference to the long term outcome. It really doesn’t help the nerves of the person waiting for the result, does it?!
The whole system is imperfect, although I believe that most people still get the best possible outcome. Apart from the lack of investment in the NHS, the other problem seems to be lack of communication. When you have a cancer diagnosis, you want to know the plan and you want to know that any unexpected delays are not dangerous.
I read every scientific paper there was when I was diagnosed and knew all the stats, but was still a little anxious when I found my surgery wouldn’t occur for several weeks. My poor CNS was rather oversubscribed and not well herself, although she was excellent when available.
I believe it’s time the government let GPs decide how to manage their caseloads for asthma, high blood pressure, etc the way they think best instead of making it all a time-consuming, box ticking exercise. This might help create time for offering a little more support to patients with other urgent issues. I’m not, in any way, decrying the importance of good management for chronic conditions; just saying that GPs have huge numbers of targets to meet, many of which seem to prevent them from being able to use their common sense by allotting less time to chronic patients who need less management (like me and my asthma, for instance!).
Lots of love
Gusbun
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Gusbunxxxxxxxxx
