Thanks especially to the two 'Blue's' who replied to my post about phoning the GP. Believe me it was no easy thing to do. There's some disappointing news however.
I phoned the Pain Clinic myself yesterday just to get an idea of what their waiting times were. I spoke to a lovely girl who explained to me that they don't offer 'pain relief' such as injections & the like anymore, it's more about helping a 'person deal with their pain'. I couldn't believe it & should have phoned them before ringing the GP. This as I'm sure you're very well aware is of no use to me whatsoever. I just cried & cried. Now I have to try to get hold of the GP again & try to work out what can be done 😡😢😢 I just have nowhere to turn.
I phoned MacMillan yesterday & they said I would need to speak to a Nurse. They were all on calls at the time & I was told I could try later. I was so very tired, upset & in so much pain I decided to leave it to today. I'm going to give them a ring in a bit. Fingers crossed but I'm not holding out too much hope. Just don't know how much longer I can live like this. 😢😢😢😢
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maddie_1234
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How frustrating :(. I feel your pain. It seems like all Doctors reckon that if you had cancer and its treatment, and you're not dead, that's it; job done. There's no regard for the fallout. With the NHS so overwhelmed, they just don't (or can't!) care. It's depressing as hell and why I just have to deal with my PRD alone. It doesn't always work and some days, I just end up going to the toilet in a Field somewhere cos I nearly have an 'accident' , or spending all day starving because I can't eat lest my bowel kick off. 😞 Such is our lives now. 😐
Hey you, I couldn't have put it better myself. Did you read my post were I said what my Colorectal Surgeon said to do about the 'Runs'. He told me not to eat any fibre at all because the Bowel just can't handle it. Chocolate is a laxative for example. He said to stick to a Low Residue Diet which is basically anything White. I looked on the NHS Website & found a table of foods you can & cannot eat on a Low Residue Diet. Printed it & have it on cupboard in Kitchen. Just wondering if you've tried something like that. Only thing is, as you're not eating any fibre there is a risk of constipation or blockage. I take a gentle Lax if I haven't 'gone' in a couple of days. It has certainly reduced the amount of 'Accidents'. xxx
Thanks, but I've been dealing with PRD for a few years now (it really kicked off in 2017-18 and I had cancer in Winter of 2008-09). I have tried everything; low residue (which is still generally my diet - lots of white bread, gluten-free pasta, rice, apples, bananas and other boring stuff). I've tried low FODMAP, no caffiene etc. etc. etc.
Sometimes it works, but sometimes my gut kicks off for no apparent reason. It drives me spare 😠.
What's even more ridiculous is that when I read medical journals and research papers (yes I'm a science geek wierdo who reads medical papers til 2am) 😜, that very little has improved in PRD since at least the 1990s. Dr. Andreyev's research is the gold standard nowadays, but even that was published around 2009 so what's the hold up!?
I read a recent paper which suggested that all the restrictive diets, bile acid binders (i.e. Colesvelam) don't even work! It's just Loperamide or suffer then. 🙄
I hate this bloody condition. It's bad enough to get cancer under 40, then get stuck with this shit the rest of one's life (if you're lucky to survive the premature menopause and other late effects). 😐
Sorry for the rant; bitter is an understatement as I was caught short out at work again yesterday and had to go in the Woods. FFS 😖. Such is life with PRD.
I hear ya RT. If you've read my Bio then you know how badly I was neglected & the Cancer could have been picked up so much earlier😡😡😡 It has literally ruined my life in every way. I had Radical Hysterectomy & Radiotherapy. I was told that after my 1st session of Radiation, my Ovaries would 'die' & I would be put straight into early Menopause. I was 28 😡 I had to deal with that along with the after effects of Surgery, Radiotherapy & a none functioning bladder! I had no bladder function for about 8 months after treatment. What I don't get is that my Oncologist at that very time in 1998 told me that if the Cancer doesn't come back & I live 'to a ripe old age' to expect that damage from the Radiation will kick in at any time. A Year, 5yrs, 25yrs. No way of knowing. If she knew that then, why has there not been advances in PRD????😡😡😡 My PRD really kicked in 17yrs after treatment in 2016. I've had a really rough few nights & days on the friggin toilet. It's just exhausting & no matter how many accidents I have it never gets any less stressful. To be honest, I put the diet sheet up in the hope that I would be able to eat. Due to not caring about myself, fear of food & having no appetite my diet consists of.....Cornflakes & a Yoghurt at night & Cornflakes in the morning. BTW you mentioned Apples & Bananas. On my diet sheet they are a no no. Fruit is a no no as there's Fibre in the Skins of Apples etc It says in order to replace the Vits that you would get from fruit, to drink the Pure Juice version (with no bits in). That may help? I don't know what part of the Country you're in. I'm in NI. I know that there are 'Late Effects' Clinics in England & that they can help you online if you are not near one, even prescribe different Meds etc. I'm waiting to get more details on who to contact from a girl on here that said she did it, that it's available to People in England, Scotland & NI & she thought it was great. A phone call to the Clinic to see if you can be referred to them, a referral letter from your Doctor & then on ya go. I know things work out for some & not for others but as usual we are the one's that have to put in the bloody work for ourselves. Hope you're having a better day today. Catch up soon xxx
Yes our stories are very similar :/. I was 30 when I was diagnosed with a rare endo-cervical adenocarcinoma. I was being treated for Endometriosis and Dysmenorrhoea and my cancer symptoms were fobbed off for over 9 months before I was finally diagnosed after nearly bleeding to death. 😐
I was never even told that Radiotherapy could bring about late effects. I was only warned about the diarrhoea during treatment and that everything would 'return to normal'. Yer, right. 🙄 NO. I was put into premature menopause as well (it's a well known consequence of standard cervical or womb cancer treatment), and was never even told until after I started getting hot flushes. FFS 😖.
Now I really struggle with food too. Every time I eat, I need the Loo almost immediately. Loperamide seems to be losing its effectiveness and that is very worrying. It's the only thing that allows me to work and ride and go mountain hiking and all the outdoor things I love to do. Otherwise, I would die if I couldn't get out my house!
My situation is a bit unique. I live in the UK in the Winters (when I am off work) as I work as a Field Ecologist in Canada in the Summers. I was meant to go to a Late Effects Clinic in Toronto in 2019 but then the bloody Covid scuppered that plan and there hasn't been any word since :/.
I am returning to Britain next month (I live in Berkshire), so perhaps I'll look into it, but sometimes just summoning the strength to deal with doctors/hospitals/nurses etc. is just not possible for me. I have Aspergers and getting cancer was hard enough for me to accept! 😮
Btw, I peel my Apples and only eat the Organic ones I grow in my Orchard. I really don't eat much and it doesn't seem to matter what I eat; I need the Loo straight away afterwards. Damn PRD. ☹️
Gosh RT it really sounds awful for ya. You know as well as me that we have to do the work ourselves 😡 Has anyone even provided ya with Co-Codamol 30/500. I'm on 8 a day for pain & to stop the runs. It sounds like you have a great life (apart from the obvious). When I get the details of that Late Effects Clinic, I will pass them on to you. Remember you are doing it for yourself & to try to improve your quality of life. We know we can't rely on Doctors etc but we have to go through them for our own benefit. We can only try. Thinking of ya xx
Hi Maddie, I've just been reading your bio and your 'story' is almost identical to mine! I suffer extreme pain from recurrent incomplete episodes of bowel obstruction. I too was told I would have to have a colostomy when things became too much. At the beginning of this year I had a really bad episode and went to my consultant to tell him I could no longer cope with the pain only to be told that my bowel is much too damaged. I was at my absolute lowest point yet. The pain was so bad I wished I could fall asleep and just not wake up. I'm in a much better place now, physically, mentally and emotionally thanks to a program I completed with the late effects clinic in Bath. I live 290 miles away from Bath but was able to complete the program virtually. I met with a fantastic specialist nurse (Jane), physiotherapists, psychologists, occupational therapists and a pain management consultant. To finally have a team of people who understand the pain I am in was absolutely life changing for me and I cannot recommend them enough. The pain consultant changed up my medication as the pain medication I was on (morphine) was just not suitable for the type of pain I have. Anyone who lives in England, Scotland or Northern Ireland can be referred to this service. Please think about contacting them. I can send you the details. It's just one phone call to Bath and if you are a suitable candidate, a referral from your GP. I honestly can't stress enough what a bad place I was in at the beginning of this year. I was absolutely desperate and completely broken. I was housebound and the isolation and loneliness was killing me. Don't get me wrong I haven't found a cure. I know this is my life and has been for the past 15 years (diagnosed with 3B cervical cancer at 28 years old) but I just feel I'm able to cope so much better now. I had tried my local pain clinic and to put it bluntly it was an absolute load of rubbish. That's why these late effects clinics are so good - they are specifically for people with pain from cancer treatment. Sending much love ❤️
Oh Blue, our 'Stories' are almost identical. We were so young when diagnosed with the same thing! Although I'm 10yrs older than you our symptoms are more or less exactly the same. I can't believe that coming from NI where there are no Late Effects Clinics that I may be able to get referred to one in England & get help online!!!! You may just be my saviour. My GP has referred me to a Pain Clinic here but when I phoned them, they said they didn't really deal with Pain Relief such as Injections etc & dealt more with how to help you cope with pain!!!!! Why they are called a Pain Clinic is beyond me & I don't really want to go there. It probably won't be for another 6 months or so but you know what an effort it is having to leave the house for anything & I suffer with terrible Anxiety & Depression to boot. I would really appreciate any Info you could give me about the Clinic you attended online. Just wondering if they can prescribe Meds from England but I guess I can ask them that. I will have to go through the stress of contacting my GP again but if it's going to benefit me at all, I will be able to get through it. Just hope they don't turn down referral if I get that far. I can't thank you enough. Sending love right back at ya ♥️♥️
Hi BB, I'm sorry for bothering you but I was wondering if you could give me the Contact Info for the Late Effects Clinic in Bath that you attended. I'm gonna go for it!! Instead of trying to ring my GP if I am accepted I've decided it would be easier to write to her explaining everything. In that respect would it be ok for me to use the post you sent me about the Clinic? Lots of hugs xxx
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