As if it couldn't get more personal..... I need a bit of advice and for want of a better word; reassurance. At the end of my treatment which is now 3weeks ago I had my final review with one of my nurses and was given a leaving 'present'! I have to admit it was a bit of a jaw dropping moment!! I was given a Femmax dilator/ trainer set. I was given instructions on how, when and how many times to use it. I was told to start at the 3 week post treatment mark but I'm really nervous as I'm still very sore and still having a wee is very painful. How was it for you girls? Is there anything that I need to take heed or be worried about? Xxx
Hey everyone, thanks for flagging this up. I'm six weeks after treatment now and can feel sore bits in my bumhole and vagina but it is a lot better. I did manage to insert a finger and it was sore and painful in a new wierd way, so im not going to start with the dilators yet. I'm going to get more calendula pessaries, and see if I can get https://www.mucosamin.com/ prescribed as was suggested in the comments above. It sounds good, I gues now after the heavy inflammation, scar tissue is beginning to form and that is tight and stringy, we have to try and relax that new tissue as it forms.
Unfortunately we get fobbed off with whatever can be got away with, the experience with the councillor sounds pretty typical, I think this forum is the best thing. I cant imagine ever getting through to anyone on the phone about any problem I had to be honest. My oncology nurse was nice, but she never remembered what she gave me before, or my name, she was worked off her feet, as were all the radiotherapists, I barely saw the same one twice in 5.5 weeks.
I have seen my doctor once to sign the treatment papers in the beginning, and once to sign off after treatment, and she was more than an hour late due to other commitments and one realises what a little ant in the ants nest one is. Mis-diagnosed for over 2 years, told I was fine and to stop bothering the doctor, then after 3rd colonoscopy not to worry about soft growth, it was deffo nothing, no biopsy required, then called in at Xmas for doc to tell me I'd have to have major surgery and a bag for life and spots on liver could be spreading, from zero to WTF ! at Kings hospital. I had a terrible day, then thought, I cant keep up like this, and tried to go Zen, which helped. Locked down on my own, Mum dead pancreatic10 months earlier in lockdown. Then alone and estranged father broke hip, complications, says cancel treatment to look after him ! he nearly dies but rescued by old friend locked down from France so around, my only sister having surgery to remove colon growths up in Yorkshire. Honestly I'm probably shattered but I just forget everything and eat, sleep and get out in the fresh air. Thanks to the heavens for this forum and a couple of friends.
Twigley You’ve really been through the mill Sarah, I don’t know how you’ve managed to make me laugh so many times while your life has been such a war zone & you’ve had so little support.
Being in the hospice & getting help from all the professionals here has given me a chance to realise how run down I’ve been, & that it would’ve been better to ask for help earlier. And they’re giving lots of reassurance that I’m not a fraud here under false pretences...
I admire your gutsiness & love your sense of humour - maybe now is the right time to ask for some help? Would you know where to start? xxx toni
Aww Twigley, you have certainly had a @#*! time of it and my heart goes out to you. I too was messed about for a year... the usual thing as I have learned on here Haemorrhoids must be embedded on most Doctors brains and in my case the worst culprits were the Drs receptionists "oh we can only give you an appointment if you ring on a morning between 8 - 10AM " . I was in so much pain that I actually went down to the surgery in tears knocking on the door... they turned their backs and ignored me, at the same time I rang and they ignored the phone! I first managed to see a locum in the February who of course prescribed hemaroid cream, fibrogel and senna!! I struggled until April .. on hold cut off......and finally got a Drs appointment in late November!!! I too have only seen my oncologist for the exact reasons as you ONCE! I nicknamed Dr Death because at one point I had to ask him to give me some hope ...he didn't. We certainly do get a crap time of it (pun intended) don't we. I see the 'happy chappie' in a couple of weeks God help me. I did get a phone call today with an appointment with a hypnotherapist, it's on the phone but if I'm accepted I should get a lay on her couch I'll blinking need it lol. I'm going to have a couple of wine and sodas tonight, to hell with the bloody painkillers although I'll be needing them tomorrow. I know it's cliche but you are an inspiration.. definitely to me. Xxx Marie
I've been procrastinating for a year! Yeah, I tried the dilators, creams, even pelvic floor therapy. It's a no go for me! I'm not thinking of sex in the future and there are many forms of intimacy if it comes to that. I'm 65 years old, single, happily. Don't put pressure on yourself....we've been through A LOT!!! The nurse blithely handed me a very large looking dilator and said to use it twice a week. I had JUST finished radiation that day! Ummm....NO!!!!! The dialtor sets you can buy really do start with very small, narrow ones. If you do try, be sure to stop as soon as you are uncomfortable. That's the only way you will be encouraged to get back to it again......Best and be well, Lynn
Hi All, on this forum we keep hearing about people being fobbed off and misdiagnosed with piles, sometimes for months and in Twigley's case for 2 years. I did a talk (online) at an anal cancer course at my treating hospital about treatment from a patient's perspective. Other professionals did presentations too. One of them said that the average length of time they see patients with anal cancer is 6 months after they first consult their GP. He didn't say it, but reading into that the patients have obviously been fobbed off for that 6 months. I wonder what training GP's have in identifying possible anal cancers. This is something I will raise at my next Oncology appointment, I think this issue needs highlighting somehow if possible otherwise this is going to happen to more and more of us with this type of cancer. Bev x
1in1500 Yes please Bev - go for it! Thanks x toni
Hi Toni8776 I definitely will, things need to change! Will update after my appointment. Bev x
1in1500 look forward to the update.
Mind you Bev, it was my GP who pushed me to get checked for cancer, & it was me who was convinced it was haemorrhoids. I’m not the sharpest tool in the box xx Toni
That sounds great Bev! The more awareness the better. I wasn’t fobbed off as my rectal bleed took me in on emergency- a doctor stood at the end of my bed and said she was sorry I had been diagnosed with rectal cancer! I responded with.... oh that’s what it is, is it? I presume she thought someone had already spoken to me, which they hadn’t, but she also got it wrong as it was anal cancer and apparently they are very different. Thankfully my niece who is a consultant gastroenterologist could see my MRI and scan results and told me it was anal cancer and should anyone say otherwise to put them right!!! Fortunately it was all ok after that and treatment plan put into place and worked. The unknown is very scary and I was obviously so lucky having my niece to help. I think any awareness raising is brilliant and earlier diagnosis will always be preferable. I was Stage 3 so been there sometime I guess. Good luck Bev and thank you for all your help and support.
Bottom56 thank you I know it's a rare cancer but there does need to be more awareness amongst medical professionals. Bev x
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