So today I am writing this and I am pissed off, I have done everything I can possible to recover, I am clear of cancer but the effects left from radiotherapy are awful. I now have nerve damage to my back and they are querying a slipped disk, I keep getting recurring water infections and have literally been on antibiotics since since my op last August. My blood pressure is so high they have put me on blood pressure tablets and to top it off I cannot sleep as the pain in my back is awful. Just when I get over one hurdle I hit another at 100mph. I know I should be happy as the cancer has gone but I am tired and in constant pain. Has anyone suffered this after treatment ? I feel like an old woman :(
I read a great line somewhere..'I was feeling fine until they tried to cure me'
Nothing I can say to help I'm afraid but I'm hearing you xx
So sorry to hear what you are going through now after all what you went through before - its just not fair is it.
I've had coccyx pain since my op (5 months ago), my GP thinks it was caused by the op and could take a long time to heal. I also have possible nerve damage in my left thigh and was told this week that the extreme soreness and itching down below could be permanent!
Like you I'm so pleased I'm cancer free at the moment but we could have done without these extras couldn't we! Your back pain sounds awful and must affect you considerably.
Would be so nice to feel good again but hopefully things will improve soon.
You've come so far, hang in there.
Hello Emma, yes I have had constant reminders of the after effects of the chemo, radio & brachy. The chemo has left me with nerve damage, sepecially my feet which feel like pins & needles all the time, they become very painful therefore I cannot stay on my feet for very long; when I have my shoes on it feels like they are full of stones or gravel (that's the only way I can describe it) My fingers have pins & needles all the time, they feel 'fat' but they're not. My thumbs feel as if there are thorns under the skin and if I outstretch my hands there is pain like arthritis in all my fingers. They go numb every now & again so I have reduced feeling & cannot grip things, and have to drop my arms down by my side to allow the blood to flow back into my fingers. my bones ache feel like arthritis every time I get up out of a chair or out of bed. I finished treatment back in July 2013 and I can honestly say I felt better then physically than I do now. I feel like an old crock. I saw the doctor Monday and he put it down to chemo & radio damage.
I have other weird 'symptoms' that I definitely didn't have before all this - like my jaw bone cracks a lot when I open & close my mouth and it aches - and MOST weird, but when I close my teeth together, it seems as if the bite is all wrong, like my teeth don't fit inside my mouth Anyone ever heard of that before??
I am so sorry to hear you are suffering these horrible after effects.
I had my last treatment in August 2013 (chemo, radio and brachy). I started to suffer back pain towards the end of my treatment and it gradually became worse, during my follow up MRI scan it was reported that I had "posterior annular tear at the L5-S1" I was told to allow my body time to settle down but the pain has been so bad I have been paying for a private physiotherapist once a week but am now at the point I cant keep paying £45 per week, it does help a lot. I was thinking I might go back to my GP ans see if I can be referred to a NHS phsio, your post has insired me to do so.
I hope you are able to get a diagnosis for your back pain and some treatment soon.
Big hugs xxx
Thanks guys for the replies, I went to A&E last night for some stronger pain relief and the doctor said that it was probably a metatasis, bloody idiot, I am sick of idiots getting it wrong. Have to say I do not believe it is a recurrence as I don't have that inner voice telling me (you will all understand that inner voice). My consultant has requested a MRI not to check for cancer but to look at my back, the pain started in my bum cheek and has spread to my lower back. The pain from the back ache is the worse pain, its a burning aching pain horrible. I just want to be well and this just feels so far away at the moment. Just when you feel better something else gets you. I am so relieved I am not the only one although I am sorry you are all having the same awful problems. xxx
I am sad and at the same time reassured that we are going through the same thing!
I am waiting for the results of an MRI
to see if my treatment worked.Because of the pain I was thinking not!!But I am now hopeful that it has worked,and this
pain is something that is a side affect of the treatment.I have been having weekly accupuncture and it really has helped.
The numb feet thing has really almost gone.I find the nights are the worse and take paracetamol and codene washed down
with a small glass of red wine!!!Works for me lol!
I really feel for you Emma, from what I've read of your previous posts you've been through hell.Bloody nightmare.
I really hope you start feeling better soon.
All the best to all the other ladies.
Hope we all can put this behind us soon.
Take care. Becky x
Hello lovely Ladies,
I was absolutely convinced that the back pain I was experiencing was the treatment not working and the cancer spreading to my spine. When I was given my results from the MRI scan I was so blown away I just burst into tears. Mine is a tear in one of the low disc, which I believe is the same as a slipped or prolapsed disc. The pain radiates and is often a burning pain in my left bum cheek or can be down my left leg or just sit nice and painfully in my back. I have decided to try and strengthen my core to help support my back, lots of walk, maybe swimming and I am going to return to palates. I am still youngish 38 and do not want to be in constant pain anymore.
Thank you ladies for making me think about it and not just accept it is an after effect of the treatment. I which you all well, keep us updated on your MRI results.
Happy Sunday lots of love Mandy xxx
sorry to hear you are having such a lousy time. I am struggling with side effects too and it is very upsetting. Just seems like there's no end in sight sometimes.
still, at least we can come here to cry on each others' shoulders, so to speak.
Hope you get a break soon, you deserve it. X
I am so sorry to hear that you are struggling a lot :( It seems that all of us are experiencing some sort of effects of the treatmemnt we have received and sometimes it is difficult to say what is real and what is not as we all are too aware of our body after beeing through this horrible scary experience:( Hopefully, the MRI will show something and your pain will be sorted soon! My thoughts are with you all, brave ladies xxxx
Hi ladies, I am so sorry to hear some of these stories and can totally sympathise with a lot of you. I needed a TLH due to Cgin but bizarrely had Coccyx pain before I had my Hysterectomy. I have since had MRI &Xray and nothing showed up. I have had 1 steroid/cortisone injection in my spine which has eased the pain somewhat. I am curious as to why this Coccyx issue is so common on this site. I was also surprised to hear that other ladies have been having issues with pins and needles and numbness in the hands.. I have been experiencing this since my Hysterectomy.. Bearing in mind I haven't had Chemo or Radiotherapy it is all very strange. My BP has been erratic and I was given Meds for a while in order to stabilise it to get through my Op but I am now off the Meds and it seems to have settled down now. Also had to visit the Urologist due to urine infections and it turns out that my bladder isn't emptying properly and I have 'debris' in the urine which was picked up during Cystoscopy. The ailments just seen never ending..Thankfully my first vault smear has come back negative but got to wait another year for 2nd one.. Having just plucked up the courage to let my poor hubby near me again I have had some slight bleeding after intercourse which has scared me silly! sorry if this has turned into a bit of a whinge but im back to feeling anxious and scared again and feel better having the opportunity to offload. Good luck to all you lovely ladies xx Luv Shaz
I have real problems with hand swelling and pins and needles since the radical hysterectomy. My lower arms go really red and my hands stiff. I've had kidney function checked and it was all ok. My GP gave me some beta-blockers which seem to calm it down, so i don't know if it's a stress reactipon for me? it's weird!
I'll be bringing it up at my next 3 month check up on Monday (gulp!) and let you know if they can give any advice.
Well the pain became unbareable last week to the point of if I had have found an open window I would have jumped. I saw my GP and she gave me some strong anti inflammitories and some Pregablin, which is used by people with epilespy but is also for nerve damage and they have worked I feel such relief. The thing is we fight the cancer but the side effects are not really explained, I have had a water infection every two weeks, infact I am just starting to get one now and have only been off antibiotics two weeks. I am on Ramapril to sort my blood pressure out too. All of the team who are looking after me are admimant its not cancer which is great. I am seeing a counsellor, who is great he is helping me no end. I am so tired and just want to be the person I was before this all happened :)
Id give you a big hug if I could! All these urine infections really suck! I have picked up some Urine testing dipsticks to use at home (got fed up running to GP to check for infection) You really need to ask for a referral to Urologist and they might be able to advise something to help you. Dealing with pain and UTI's on top is not nice. Hope you start to feel better soon and please try not to worry too much. I always tell myself each day that passes by 'fearing' something that MIGHT happen is a day wasted. If I get into a slump, I give myself a mental kick up the b** and try to be as normal as possible (if I ever was normal..lol!) Keep your chin up and we will all be getting off this Rollercoaster soon :)
Luv Shaz x
P.s Jo1982 I'd love to hear if you got any info on those pins n needles in the hands xx
I too am having an MRI on my back and I too have convinced myself that I have cancer of the spine! During my first MRI a lesion was found on one of my verterbrea and they want to investigate this further..........not scared at all!!!!!!!!!
UTI's I have just come back from Urology appointment and consultant has put me on daily antibiotics to hopefully prevent them coming back. Also taking Cranberry tablets which I couldn't say work or not but I'm willing to give them a go.
Pins and needles - When i woke up from my OP i had numb and tingling right arm and completely numb little and ring finger on my right hand. My consulatnt said that during the Op I was laid at a sharp angle head lower than pelvis. This was to use gravity to help keep other organs out of the Operation site. He explained that this puts pressure on your coccyx (Im guessing my legs were akimbo in stirrups) and the numbness was probably a pinched nerve, luckily mine sorted itself pretty quickly but he said it may last for months. Hope that may explain the coccyx pain. I also think that as our stomach muscles ahve been cut through we are using our back muscles far moer than usual.
I'm no expert and these are just my experiences!