Hello,I am new to this group. I am just about to start week 4 of my chemo radiotherapy. Yesterday I started experiencing horrible bone pain,today it has got worse.It feels like my spine and ribs are breaking(sounds a bit dramatic but only way I can describe it) Has anyone else experienced this? I had a blood test last week and they said my platelets etc are very low so have had to stop the chemo. Die a blood test tomorrow to see if it has come up.
Hello Mrs.H welcome to the group. I see you have already started your treated and around week four you may start to feel some impact on the treatment. Was you issued a 24 hr helpline from your team? It may be an idea to give them a call and let them know how you are feeling as this will be recorded on your records. Your body does take a bit of a bashing and it can give you all sorts of aches and pains and sometimes bladder issues. So I think for advice on what you can do it’s best to call your team.
Thank you for your reply Jaycee12,I have been given the 24hr number. I did mention it to the radiographer yesterday but they didn’t seem bothered. Generally I get the,well it’s going to get alot worse so pretty much suck it up answer. So I don’t like to keep bothering them. Although it was lucky last Monday I did,because I was passing a lot of blood and clots,they did a blood test & it showed very low platelets.
Hi Mrs H. ,
Firstly welcome to the Macmillan online community although I’m really sorry that you’ve had the need to find us.
You’re a good way into your treatment & as Jaycee12 has said this treatment can really take a toll on our body in ways you wouldn’t expect. The pain may be connected with your low blood count or the fatigue we inevitably suffer with but I too would advise asking your treating team for a professional opinion, if you’re not finding your radiology team much help (I was incredibly fortunate to have a team of ladies that were always there with answers & suggestions) or the 24hr helpline then you should ask for an appointment with your oncologist on the basis of these pains & see if he/she can give you some answers. Hopefully once your blood count starts to recover things will settle down a little for you.
Hello Mrs H
Another welcome from me, and well done it getting so far, you really don't have long to go now. However, I am sorry that you are suffering such side effects, they sound really unpleasant. If the radiographers aren't being particularly helpful (I think their attitude sounds particularly casual) I would definitely get in touch with your oncologist as Nicola has suggested. At the very least they might be able to prescribe some strong pain killers to get you through this period. And keep counting off the days. I think most of us did especially when the side effects become more noticeable, and it is such a relief when there are no more daily visits to the hospital and real recovery can begin.
Please let us know how you get on.
Hi Mrs. H, you're for sure in the trenches at this point, and it stays rough for a few more weeks yet. But I'm very put out that your efforts to get help from your team result in 'Suck it up, it just gets worse.' I had some of that too and it's the last thing any of us need.
I didn't have the drop in platelets or the terrible bone pain, but I've for sure had fainter versions of it and I do worry about my bones. I had osteopenia prior to the cancer diagnosis, so have been pounding away hard on the calcium, magnesium, vits D&K and all that. No one has mentioned anything about it since, so I'm glad you brought it up. I tihnk I need to request a Dexascan.
The fact that your platelets are so low indicates (to not-a-doctor me) that your symptoms are worthy of at least a check.
It may be as simple as giving you different pain reief (or more of it). Maybe not. But it's so frustrating when they ask how you're doing and what your symptoms are and then dismiss them. One of my doctors actually looked offended when I told him my immediate-post-treatment woes and said, "Well, it's better than cancer, isn't it?"
I was so taken aback.
Suz, one of my very close friends said much the same to me, 'you are here, aren't you?' And I just kept quiet. My daughter said to me today (very gently) Daddy said you aren't very happy. And I was overwhelmed. And she reminded him of the various difficulties I have and the most difficult thing is that those who love you look for solutions, and sometimes there just aren't any; cancer has changed us, irrevocably.
I very much agree with how this cancer can change you. Some who have been left with life changing side effects do mostly cope and it’s not always to do with pain. I am in a therapy gym run by our local charity which has been fantastic and most of the ladies there seem to have had breast cancer. I never hear them speak about how they have had their lives changed apart from some find difficulties when reaching up their arm and can have tightness in the armpit. I personally cannot just forget and move on after treatment as my daily routine is to an extent controlled by my bowels and diet. Everything has to be planned if I am to go out the next day by food restriction and what toilet facilities are going to be available. I wonder if time improves it or if I am going to grow old and senile and not capable of doing this. It can be me just worrying over something that will not happen and I certainly have changed since treatment. Mostly I am happy and very grateful and suddenly when I have a down day I have to pick myself up as I know many people out there are worse off than me. Some here do great and I am so pleased for them and some of us have more challenges to cross. I’m getting a bit deep here!
I had to cancel a trip to the beach with my family the other day as my bowels had different ideas & I was worried I wouldn’t make the journey. It definitely has a hold over our lives. I saw the radiographer today who had a look to see what’s going on down below. She said skin is breaking down & bleeding,as expected,it will get worse she said. She gave me some cream called melloxy and I’m using instillar gel to go to the toilet. It’s so painful!
Did you find you healed quickly after radio stopped?I hope your bowels get back to normal quickly.
I think some of them are very black and white and have the attitude just get on with it. I saw a nice radiographer today who has given me some cream. I sat in her office and cried as a lot of my hair came out today which I wasn’t expecting.She asked if I wanted some counselling but I declined,maybe I should have taken her up on it. My husband is very stressed at work so I don’t want to talk about my problems and I can’t speak to my Dad about it as my Mum passed away with it at 30,so don’t want to bring up bad memories.
Hi I am over two years post treatment but to answer your question about the pain opening your bowels yes many find the pain improves providing you keep your stools soft. I had surgery a couple of months ago to remove a lump and that set me back a bit and I was sore again. Now I have no pain opening my bowels but occasionally my skin there can flare up as internally my skin is more fragile. Early days post treatment is a big experiment on how food affects you. Luckily some do heal over time and they can go back to eating normally. I think I have just got to wait for the results of scans I have had on the bowels to see if they can find a solution. I’m sorry to hear you are struggling to talk about how you are feeling and can empathise when you feel like unloading how you feel to your family. My husband lost his first wife to breast cancer and when I got anal cancer I thought it was so unfair on him. You can ring Macmillan on here for emotional support and of course you have us as we know just how you are feeling. My local charity had a buddy system which because of anal cancer they couldn’t find anyone to buddy me as it’s so rare. Eventually the lady that organised it buddied me as she felt it was unfair that I had nobody there available. Do you have a Maggies linked to your hospital who can offer support. As time passes we become our own experts on making life more manageable.