Hi Glasgowgirl/Angie, I think the worry about taking morphine is a myth!..When I started MST I started on a small dose and then I had to take more when the pain was unbearable. It rose from 10mg a day to 120mg ( in total per day). Now I only take 40mg and go up and down with my dosage periodically. I begin to feel more tired when I am taking too much. My Gp is happy to let me deal with the amounts I need because he knows that I know my body’s requirements. I have never been off it completely but the quality of my life has improved so much with morphine that I think it is a miracle drug. You needn’t be hooked on it forever. Before I had BC I never took any sort of painkiller and never ever had a headache and wasn’t keen on pill popping as I watched friends taking them constantly at work. But when you need morphine it is a godsent. Don’t knock it till you try it. This is not a lecture I am just so passionate about the difference it made to my life. Love Val
Hi Angie and all
I am like you - really reluctant to take painkillers I am on diclofenac and paracetol only. i am having my first appoitment with the hospice pain team on Tuesday so will be interested to find out if they can help I have recently been given a tens machine by the hospice physio and I find it really soothing
Also my top tip for hot flushes - see if you can get some scupuncture mine was done by hospice physio - absolutely brilliant mine have reduced to next to nothing
Julie x
Hi Angie and all
I was diagnosed with bone mets in my spine in September and two local recurrances, lumps, under my arm. I had been in some pain for a few months and was told by GP it was a stiff neck and to get a massage!!
Anyway first chemo they tried failed to halt progress and pain increased dramatically. I am now on Carboplatin and 5 days after starting it and zoledronate there was a dramatic decrease in my pain which I can now control with much less drugs and the two lumps under my arm have virtually disappeared!! I also am still working full time and thought have to admit to exhaustion at times during chemo - so much better than I ever thought I would ever be when first diagnosed with secondaries. Luckily I don’t have too far to drive like you. I too hate taking pain killers but can cope with what I a taking now, some days I manage without anything. Hope things continue to get better for you too.
I was also wondering about exercise as I feel I am getting so unfit at the moment and am used to walking loads, swimming and cycling. I don’t have the energy at the moment but hope that at the end of this chemo cycle I will be able to do something again. What do others do or am I being too optamistic.
Love Anne xx
Hi
On the subject of painkillers and amounts of activity - the only answer can be - is that it is all very individual. I am on oxycontin - a very strong painkiller (stronger than morphine I think) - but i am now trying to scale back.
I know that when i was on chemo there was no way i could drive - without feeling dangerously sleepy at the wheel - it horrifies me now to think of it. Now i only drive for short distances if i feel ok - but i have in no way regained my stamina. Having said that secondaries for me means i can longer play badminton - which i used to play at least twice a week - or go relatively long distance walking. I have also put on loads of weight.
My onc has never ever said to me that my chances of survival are greater if i lose weight - and i would be interested to hear if that is the case. I know that there is a correlation between obesity and cancer. but i had not heard that having got cancer it made a difference.
Thanks to everyone for their comments.
Val - good to hear about the morphine! You seem to be so positive about everything. I think my big problem is because I’m a nurse I just associate morphine with horrible things!! Need to start being a patient I guess… Good to know that doses can vary though, I just assumed it would be constant increase once you started taking it.
Julie - hope you get on ok at hospice physio, glad the TENS machine is working for you. I will look into acupuncture for hot flushes - I’ve had it before for shoulder problem & it was really effective. Anything’s worth a try!
Anne - thanks for the positive comments & glad to hear you are not in much pain.
Celste, I will try to find out more about the weight thing & let you know.
Better go & rescue my fish from under the grill before I set the house on fire…
Take care all
Angie x
Hi Bydand/Anne I was wondering how you were doing. Good to see you posting. If you are coming down to Edinburgh, let me know and we could meet up. We have a few days booked with ladies on this website if you want to join us anytime.
Before I had my chemo last year ( I started in April and finished around Xmas) my Oncologist sent me to Pain Specialist in the WHG whjo looked at all my meds and since then I have had NO “episodes” of severe pain. She changed some of my medication and I have remained comfortable painwise ever since. I have other painkillers too but they have been essential to make my life more comfortable. She also gave me a Tens machine and some patches to put on if I had a painful “episode” again.
It is good to be able to feel well enough to go walking again. I went out a walk yesterday, a walk I was on before Christmas, and my OH commented that I was walking much better and I could also walk further. It is good too to be able to start doing something at home without having to sit down every 10 minutes to have a rest. Love to all on the thread and I hope you are all doing well, love Val
Hi Val
Good to report something positive and I can’t believe the difference this chemo is making - just a pity these cocktails make us so darned tired. I will be coming to Edinburgh after this chemo cycle finishes in March when hopefully I get some energy back so probably April/May. Look forward to meeting face to face and will keep in touch before then. Great to hear that you are out walking again and getting your energy back - you always inspire hope. I miss my walks so much.
What exactly is a Tens machins I have seen a few women mention it? I was offered visit to hospice pain doctor and will go down that route if I need to in the future. At the moment no need.
Hope the fish didn’t get burn Angie 
All the best to everyone on the threat.
Love Anne xx
The fish was fine thanks! Weight watchers recpie for cajun cod fishcakes. Yum…
Hi Anne, I got aq TENS machine from the hospital. I have one but since I got it I haven’t needed it…typical…My mother got one from her GP for her sore back years ago and she used to use it a lot. It is a little box that has two electrodes that you put on yuour back (If that is where the pain is) and it sends pulses to the sore spot. Don’t know if this is 100% accurate but that is generally what it does. Perhaps someone more knowledgeable will be able to explain better. Glad you are doing ok and hope to meet up whe you have finished chemo. Love Val
Hi all
Cajun fish cakes sounds delicious!
TENS machine sounds interesting and certainly worth a try rather than stronger drugs - I hope in the very very distant future.
Anyone got any tips for exhaustion? Feel good just so flaming tired!
Hope you are all having good weekend.
Love Anne xx
My onc told me that on no account should i use a tens machine - this he says applies to any women with bc in spine - big risk of it spreading the cancer apparently. Maybe others should check with their oncs to see if that advice holds true.
On the subject of exhaustion with women who have secondaries - in the states some oncs are using ritalin for women with very good effect apparently - my onc was going to look in to this, but i have yet to hear back from him.
Hi Celeste, Val, Anne and all.
I have mets in my spine and have been recommended to use a tens machine. Just shows how different oncs have different opinions about stuff.
Tens stands for Transcutaneous electrical nerve stimulation. Mine has 4 electrodes and 2 different settings - one acts like acupuncture and you can only have this on for 30 mins at a time. the normal setting just stimulate3s the nerve endings and I find this one really effective on my upper spine where I have the biggest problem.
I must admit I am pretty wiped out a lot of the time so any suggestions on this front would be gratefully accepted
Regards to all
Julie x
Julie, I found that giving up worked helped me but I do realise that everyone is different.Some people need to work…whether for themseves…or/and the money. But it is amazing waht you can get by on. But I honestly believe that I would not be as well as I am if I had still to go to work. I do have to listen to my body an awful lot and if I am tired I know I need to go to bed even if it is the early afternoon. I used to be in a great deal of pain and also have a TENS machine but have never had it out of the box as when it was given to me I also had all my drugs reviewed and went on to chemo…so fingers crossed I have not had that incredible pain that I used to get before all the treatments started. With secondaries you can apply for DLA which enabled me give up work and continue to pay the bills. It has made a huge difference to my life and for that I am grateful. Ask away if you have any questions…but I always stay ahead of the pain( by taking piankillers before the pain actually starts) as a good GP friend once advised me.
Hi Val. You are right about work I think. I had been trying to go to work off and on since being diagnosed but just couldnt cope with it. My onc kept telling me to take some time off but I think I was just trying to ignore what was happening to me. I have now decided to take some time off and give myself a chance to recover a bit and get some equilibrium. the femara seems to be working on me and I went to see the pain consultant from the local hospice and I have to say he was brilliant. He asked me to think about using some pain patches I think he said thay were called fentanil or something like that. they are a morphine substitute which I think I am going to try - I am notoriously bad at taking tablets. Also they are going to give me hydrotherapy to build up the muscles around my hip and pelvis. Anyway I am staying away from work until everything has had a chance to settle down. I must admit I am hoping to be able to go back just because I like my job but am just enjoying being off right now
Am also notoriously bad at resting up when I know I should but I am learning
Regards Julie x
Hi Julie, I have the patches too and took them for a while until the pain improved. They come in sheets about the size of a large envelope and you can cut them to size and you have to follow the intructions to the letter…eg they stay on for 12 hours then off for 12 (I think that is right???) I put them at the base of my spine and they worked well. I too am on Femara and am about 2 months in and its going fine. I like the tablets that are slow release and once you get into a routine it is easy to take them on time. I take them when I get up after breakfast and 12 hours later before I go to bed. To keep tally I bought a pill dispenser box so if I am not sure if I have taken them or not it is easy to check. I have never had the hydrotherapy. I wonder where I could find out about that in my area. Maybe ask my Oncologist when I return in March. I had a physical job in my 2nd last job and it was getting harder to do ( didn’t know I had mets then) but leaving work has been one of the best decisions I have ever made and my quality of life is so much better. My husband and I both worked shifts and would pass each other going to work…not a great way to live…we both retired early and it has been fabulous. XXVal
Hi, just to say I have used Fentanyl a lot at my work (I’m a nurse) & the type I have seen comes in one size & slowly releases analgesia over 72hrs so you only need to change it every 3 days.
Dont know if that would help you Julie, I actually think I might be more likely to forget to change it if its every 3 days rather than daily!
Cheers
Angie
Hi Glasgowgirl
Wondered if you knew that a secondary live chat session was underway at the moment? Would you like to join us?
Best wishes
Poppy
Sorry Poppy, only just got this! Thanks for letting me know anyway, will try to join in the next one
Angie
Me too XXX