Hello Mishy and Jill and anyone else reading,
Having a bit of a break from the Forum, well apart from this response.
Mishy and Jill, so sorry to hear you are still having so many pain and mobility issues.
Mishy - glad you got an explanation for the rib soreness.
Jill - glad to hear you have at last received some specific explanations of causation. Hopefully, you will get explanation for the remaining issues soon and treatment started to alleviate at least some symptoms.
I got a letter the other week from hospital saying I was now allowed to ring up for an appointment. I rang and found out it was for a neurology appointment but no other details could be given. I went to the appointment yesterday thinking that after 8 months of crap symptoms, they considered me worthy enough to have at least a discussion of having nerve injection.
The appointment was with a neuro surgeon to discuss and examine suitability for effing surgery. What a waste of mine and his time. I clearly expressed my frustration, though obviously not blaming him as it wasn't his fault and we both agreed there had been confusion. That it would have been more apt to look at injection first. However that was not his realm.
We still made use of the time. I actually informed him that I was against invasive surgery for now (a lot to do with my BC experiences and I have decided that I am not in a place at the current time to accept surgery). I also asked if he could use his influence to speed up appointment to discuss nerve injection.
Apart from that, I am trying to ignore the pain and follow my own exercise routine. Well I can't do any worse than the so called professional treatment. My breathing has gone downhill again. I think some of it is down to the pain meds and the chilli pepper cream so going to try and reduce use even more.
Some of it is down to reduction of activities as well as side effects of cancer treatments. I did quite well trying to build myself up after chemo etc but it is a bit more difficult at the moment to be positive again. It is just like having no respite from the BC - over a year and half of active BC treatments and then straight into this. I am sure you both know what I mean.
Curlylocks - I responded to you on the other thread. Don't feel you need to respond back as I have seen your responses here.
Mishy - yes as before - ask about the rib pain and anything else that is troubling you. You are having such a hard time at the moment that I think that they should be doing everything they can to make you as comfortable as you can. I still have sore rib area after over a year and still the stabbing pains every now and again but just expect it now. I was told it was due to the surgery and radiation. It gets a bit worrying when people report almost spontaneous rib or other fractures.
Jill - greetings - You already know my thoughts on your situation. I hope the wound is healing fully now and the pains are decreasing.
Best wishes to all and anyone else who is dealing with pain and the aftermath of treatment.!
Hi Jill. I was on tamoxifen but was changed to letrozole when I complained of side effects. You’re right though, maybe I should consider going back to it
Hi Jill. Thanks for responding. It is very painful. It really limits activity. I’ve been diagnosed with osteoporosis as well. He says combination of that, chemo and radiation is causing it. I’m not buying that though. It’s happening too often. If it’s not Mets then I think the letrozole must be playing a big part. You’re right about the bone scan. They always recommend another scan or ct but won’t give a definitive diagnosis of Mets. Very frustrating. I wish you all the best in your recovery
Hi floodysa. Just wondering how your mri turned out. I also have 5 rib fractures, 4 on the left and 1 on the right. My oncologist seems very unconcerned about it but I have the dreaded feeling it’s bone Mets.
Sorry to hear that you are suffering so much my friend but glad your sitting in the garden this morning helped you, it is lovely to just sit and listen to the birds, I was watching our squirrel (yes it definitely is the same one) burying his nuts in our lawn, dont appreciate the holes but it is lovely to watch him.
Beautiful day here today albeit a little cool. I have just been to collect my car as it was MOTed today, thankfully it passed, so that is one worry gone, lets hope the other worries I have, have as good an outcome
Jill - glad that you are now moving a bit. Sleeping on your back - ouch that made me cringe! Hope the bleeding stopped ok and wounds healing as well as can be expected.
Mishy - can understand the anxiety about the precautionary head CT. Fingers crossed for your forthcoming action plan.
We might have different things going on but I think we can all agree that the pain and discomfort is just unbearable at times. I am having such a hard time sleeping during the night. The pain can intensify whether pain killers or not. I have to keep getting up and walking around. I make a drink and even have a snack and then put my tablet on in bed and distract myself watching things. I tend to fall asleep through the programmes so have to keep restarting and it puts me to sleep again. Never mind white light being bad for sleep, being in pain is much worse. I have got through "Trust", "The Killing Of Eve" and most recently "The Slap" amongst others!
I had my best sleep for months the other night, but only after taiking dihydrocodeine with a shot of Jack Daniels. I know - not a good habit and I don't want to end up an addicted insomniac but maybe every now and then for some relief. The day after, i.e. yesterday, was the first day I felt like going out properly for over a week. Spent the day in town but every step was painful. I could not even sit down in peace whilst having a coffee. When I was eating my tea later at home, I ate some of it whilst squatting on the floor as it was the least painful position.
Physio and that say about keep moving and doing normal activities but I just think they do not have a clue. If I could do normal activities, then I would not be needing their services. I would like to see them continuing with their normal activies of, e.g. work, if they were experiencing the same thing. This certainly is not getting on with life after BC treatment - I am beginning to climb the walls in frustration (or if only I could climb a wall!). I have an appointment on Monday. I will wait and see how I feel but at the moment I think it is pointless continuing with the bits and pieces physio service.
Take care all,
Hi Jill, I'm so sorry that you're going through such a horrible time at the moment and just wanted to let you know that I'm thinking of you x