Hi everyone,
it has been a year now since I finished the treatment. The tumor has gone, there is no cancer there, they told me 6 months after. So far so good.
I have a meeting every 3 months with a surgeon one time, then my oncologist the next. I have been arranged to see my oncologist tomorrow but yesterday someone phoned and moved my appointment to two weeks ahead, which is annoying but whatever.
The surgeon says there is a big lump of scar tissue in my bum, they biopsied it and it's scar tissue. The surgery team did not inspect my vagina which is closed up after 2 ins although I did tell them they were not interested. Would have been a different story if my willie had dropped off ! absolutely nothing to say about it at all. Also my urethera is always sore to pee through, sometimes worse than others. They were not interested. Also my bum muscles are weak and my sitting bones are sore. I get pins and needles in my labia and bum from sitting even on soft cushions, my pubis is fat, I guess the lymph does not drain too well.
When I came back from the appointment I was stressed that my concerns were not validated, and emailed my gp who was much more sympathetic, the one who misdiagnosed me for 3 years. and he organised blood tests, this was 3 months ago, this is how long it takes to tell you the results ! I caught covid last week and the gp's nurse called to say I was pre diabetic, I was not in a good mood. I'm celiac, slim, what the flip am I supposed to eat. I'm guessing my pancreas isn't up to much, having been an undiagnosed celiac for 45 years. Do they care ? do they put 2 and 2 together, no, they gave me a leaflet mostly about losing weight.....
Anyway I told the gp about my weak bum muscles sore bones and peeing probs, as my surgeon was not interested, they did a uti test which was neg and he made a referral for me to see gynacological phisiotherapist, I called the phisio number 3 months later and they said I had to wait for an appointment like everyone else and it would be at least another 3 months.
I have been doing 6000 steps and more at least 6 days a week but my pelvis is blasted, i cant step sideways at all well, to get on my bike I have to lift my leg over with my hand. This is one year on. This week I noticed my legs were a little bit better, and man I grabbed that moment, this is 12 months its taking.
Lockdown has not helped, normally I would be going to pilates but all classes cancelled and I didn't fit in for the Zoom phenomena very well.
My anal skin is fragile and sore, I use calendula cream. I have never used any kind of soap or product other than this, it works for me.
I'm not up to fitness after 12 months but hopefully getting there now. I'm 65 yrs old, and trying to retire in style !
I'm not right happy about my undiagnosed celiac, anal cancer and now pre diabetes.
I think I must have to be much more pro active instead of being a victim to these mistakes ...
Anyway, that was a bit of a rant. Thankyou for being here anal cancer forum !
XX
Hi Twigley & all you lovely bum belle bees
Ah, it’s good to see a vintage rant! You seem to be doing a great job of putting your life back together after cancer & all the problems of dealing with the NHS.
I’m 18 months after treatment for a T4 tumour & not doing as well as you. It was too frustrating for me to keep dealing with the NHS - for the most part, a bunch of dedicated people without the resources to do their jobs properly - so apart from a 3-monthly phone call with the consultant, I’ve divorced them & evicted anyone from my life who treats me as a patient.
I do about the same amount of exercise as you after learning the hard way to pace myself. I turn 70 next week so it’s not a shock that I’ve not been able to return to martial arts but I cling to the ever-shrinking hope that maybe one day…
Tenesmus - the feeling of urgently needing to poo - still dominates my days unless I’m lying down. It’s exhausting. I keep busy in the mornings then gradually run out of steam after lunch & spend my evenings lying on the sofa.
Given the alternatives, I try to practice gratitude. I hope to return to my volunteer bike mechanics’ group & occasionally fix a friend’s bike. I’m still learning Japanese. My Danish is still good enough to understand internet news. I bought a little 125cc scooter so I can get about when tenesmus allows. I’ve started to take a camera out on walks to shift focus away from my bum onto birds.
Wish you well Sarah, & positive vibes to the whole forum.
love xxx Toni
