The three vaginal biopsies came back clear of cancer and showed necrosis and fibrosis or "radiation changes", as gynae onc like to say. So great news.
The pain continues to be just awful. I have only worked 2 shifts in the last three weeks. I spend most of my spare time resting in bed. The most comfortable position. I go for a walk across the street to get milk and end up pale, clammy, profusely sweaty from the pain. gp has started me on targin (oxycodone slow release with naloxone reversal) and endone for break through. My bowels continue to be overactive day/night with mucous, jelly and rectal bleeding. I still have no appetite and trying to boost my poor appetite with sustagen. Anything better in food apart from soup, toast and yoghurt gives me abdominal pain for hours.
I never realised how hard it is to get help. I rang them in tears this morning because the outcome was radiation changes and 3 monthly check-ups and i have a colorectal appointment on 7th march. I said that doesnt help me now. The hospital i go to doesnt have a chronic pain team and my gp and i are just trying to guess what works. I have never felt more helpless in my life.
I was so happy when I read your first paragraph that it wasn’t cancer. That really is great news.
However I am so sorry to hear that you are having such awful side effects from the radiation. I really hope you and your GP can find something that helps make life better.
Like Susan before me, I read your first paragraph and cheered (I had been wondering if you had received any news).
It's great that the cancer isn't back, but awful that you are in so much pain right now. Can your GP contact a specialist pain team in another area by phone/ email, on your behalf, for some advice? Even a FaceTime/Skype consultation remotely would be better than nothing at all. Perhaps your GP could draw on expertise in the treatment of chronic pain in people with serious coeliac symptoms or enteritis? (I'm just pitching wildly here...) I'm assuming that you've already tried Buscopan as a part of the approach, but if not it might help cut down some of the intestinal spasms & cramping alongside the stronger pain killers. To be honest though, I have no idea what to suggest, but I wish I could give you a big hug. Which I realise is no use whatsoever. :(
One step forward three steps back. So sorry to hear of the ongoing pain and debilitating bowel issues. I hope the appointment you have with the gastric team can offer something more helpful. Let us know how you get on. Xx
i can totally relate to your bowel pain, we discussed it before and it would seem we are both experiencing the same issues. I to spend most of my day in bed or doubled over on the toilet, I’m still no further with getting help and non of the meds my gp prescribes help.
I don’t know about you but I feel worse now than I did through treatment!
I hope you do find a resolve and things get better, I’m back with my gp today and hoping to move in the right direction as I honestly don’t feel I keep going like this.
So sorry to hear you're having all these problems though. I too have what the oncologist calls radiation changes inside, but mine only hurts when I actually go to the loo.. like a red hot needle inside ? I begin to dread actually going but force myself. It's actually a bit better for me if I drink loads of water. Not sure what to suggest for you but keep chasing them and let them know how bad you are feeling x
post treatment care seems to really be lacking. I found my GP was more help then anyone else after my treatment was done. I had horrible mucus after radiation that seemed to last forever. It’s the pain that is the worst. Would really suggest looking or researching about probiotics as there is strong evidence that it will help heal your intestines and bring back healthy bacteria to your gut. Make an appointment with a naturalist if your GP has no info for you.
Keep your chin up. It may take some time but you will get there.
Thanks cheery. I really am happy that its not cancer. Just frustrating getting the pain under control. I have had constant rectal, vaginal, lower back and lower abdomen (the whole pelvic area) for ages now. The targin and endone help bit only enough to be able to rest with it and it gets uncontrolled as soon as i do anything small. I have asked the gynae onc nurse to speak to the team about referring me to the pain team at another hospital. But still waiting to hear back. Hugs ** back to you.
So happy about the no cancer outcome, but I hate that you have to continue this battle. A friend of mine with cancer took meds with cannabis in them to help her appetite, but I'm afraid that may not help you with the bowel situation.
I did have a friend whose mother had pelvic radiation for anal cancer, and then she got necrosis. She ended up having hip replacements and is now doing great. Keep calling up doctors and searching on the internet. I know there are answers out there for you.
In the meantime, be good to yourself, keep us updated, and I am saying prayers for you. And it is not just something I say...I really do have a prayer list and I follow it! Hugs.
Thanks shell. Im really happy its not the cancer too. Xx
Yeah i feel worse then when i was having treatment. Funny the big 8-10cm tumour only gave me period like pain. So didnt real need anything stronger than panadol and neurofen. And even with the fatigue i could still do somethings. This has really incapacitated me.
The targin (10mg oxycodone/5mg naloxone) twice daily and endone for break through (5mg)helps but only enough to rest with it. I rang my radiation nurse for advice for what they usually start people on. Everyone seems reluctant to give pain relief these days. But its not functional when you spend every spare moment you have in bed. I have never really required anything stronger than panadeine before Soon as i stand too long, sit too long, do some limited housework like a load if washing or put some groceries in the cupboard i go white, sweat profusely and feel weak from the pain.
I see the gp Tuesday again as the targin is only a 14 day script. I have the colorectal consult on the 7th march. I have asked gynae onc if they can refer to me to a chronic pain team at a larger hospital but still waiting for them to get back to me.
Oh bless you, you sound just like me. Mine has got so extreme I’m now house bound, I almost blackout every time I stand or walk from the room to the bathroom.
my gp came out to see me today as they’ve decided to treat my bottom pain as Proctitis, i am now taking an oral steroid 3 times a day and also a suppository steroid 2 times a day in a bid to help with the inflammation to reduce/remove the pain I’m in. I’ll let you know if this works for me as it may be something to discuss for yourself!?! In terms of my pain relief I’m currently taking 30mg longtec twice a day (they are a 12 hour release tablet) and also Oxynorm 10ml every 2 hours. Next week I’ll be changing the longtec to 40mg if there’s no improvement from the steroids. Not sure if these meds may help you but so far they are the only ones to help me.
ill drop you a message next week once I’ve had my review and let you know if the steroids work/help!
I really hope the proctitis treatment settles the rectal pain for you. It would really good to finally have a breakthrough with it . Its really hard to get on top of things when your life is affected so much. Take care. I really hope things improve for you soon. Wishing you all the best shell. I will update you if anything changes xx
Ahh Bexter that is great news it's not cancer!!! So happy for you!! :) ...But it sucks ass you are in so much pain! Keep on at them though lovely, i hope they can give you something to help ease it. As mentioned above, i was told that probiotics (actimel/yakult) are a good thing to have daily as they can help restore some kind of rythm-ish.
