Hi Emsie, would you feel able to talk to someone on a one to one basis to at the very least off load/share your feelings. Ellen and the team are very good. You’ve got a lot on your plate and your illness/pain is no less important. Is your GP understanding of your situation? Do either you or your husband attend a Myeloma Support Group?
I hope the pressures of your situation easy.
Kind regards
Linda
Hi Rebecca, Many thanks for your good wishes. My celebrating continued into the wee sma’ hours due to a surprise party my sister and cousin arranged. I won’t be moving too fast this morning, just because of tiredness 🙂🍷🍾.
Do you or a family member have MM?(hope you don’t mind me asking)
Linda.
Hi Jenny, I’m sorry to hear your dad is receiving treatment for mm. I do think that it can be harder at times for family and friends to watch a loved one go through a cancer. The feeling of helplessness and despair must be dreadful. I know I felt guilty about putting the burden of mm on my family but on the other hand I also know that my family 100% wanted to support me through it all. Try to take things slowly and get as much information as you can. The more informed you are the more you can deal with things and keep the worries in perspective. The secret to living with myeloma is enjoy what you can when you can. When there are days that are not so good then relax and let them go in the hope that tomorrow will be better.
Do get your dad to report his sore legs to the team looking after him. Whilst I didn’t have sore legs it may be quite a normal side effect at this stage. His team may if necessary alter the treatment in the hope that discomfort subsides.
Wishing your dad all the best for a good remission and speedy recovery. Hope the journey isn’t too tough on you either.
Best wishes
Linda
Many thanks David. I’m delighted to hear you are 6 years down the line. I agree the first few months getting your head round things are tough, and life in general has to change a bit to accommodate hospital appointments, tiredness, pain etc. I too run a support group, along with a friend. I would highly recommend it to anyone considering whether to join a group or not. It makes such a difference having people to discuss things with, speaking to people who know what myeloma is is comforting!
I had a lovely day away yesterday with my husband, only to be duped into a visit to my sister’s which resulted in a surprise party for me. It was just wonderful, I have been very lucky indeed to have a good supportive family around me from the beginning.
All the very best for lots more good quality life with myeloma.
Linda
Well done to the 27 Marathon runners and Susan and her daughter for their 21 mile walk. All thie fundraising does make a difference. Thank you x
linda
Morning, I too am sorry to hear life is a bit rough for your husband and therefore you at the moment. I agree with what Rebecca says. After my treatment 8 years ago I felt very tired indeed, I would fall asleep anywhere any time, even the Hard Rock Cafe in London! I was unaware that my mood was low, my husband mentioned it to my Macmillan nurse who over a few weeks talked to me about taking a low dose of anti-depressant. Initially I was very much against more medication but once she explained that the chemical tank in my brain was empty and couldn’t be topped up without assistance it made sense to take it. I didn’t need to take it for too long(9months), it gave me the ability to see things more clearly, to realise I could take control of my life and very slowly start living again. Small things like a wee walk round the garden, a drive in the car with a stop for coffee (and cake), a visit to friends all led to doing bigger and better things for us both.
Wishing you and your husband all the best.
Regards
Linda
I too watched it, heart breaking! Her courage to keep trying to get better was amazing. Hope I can follow her example to keep chasing to get better .
Regards, Linda
Morning Suzi and Jan. Sorry to hear your husband has had to stop having his bone strengthening infusions. My experience is that I’ve been on primidronate infusions for 8 years since my diagnosis. I was initially told they didn’t know what side effects long term use would have as there were not enough patients surviving !! Thankfully that has changed. The current thoughts as i understand are that each infusion has a long term effect and therefore doesn’t need to be administered monthly. My consultant was considering reducing my infusions from monthly to quarterly as per new guidelines but due to my paraprotiens very slowly starting to rise (first time in 8 years), he has decided to keep me on monthly infusions.i would be inclined to speak further with the consultant Suzi to ask whether the infusions can be started when the kidneys recover and if so can it be done quarterly rather than monthly.
I too have collapsed veterbrae Jan. How do you manage any pain? I have not had the bisphosphonate tablets but understand they do the same job as Zometa, primidronate etc.
Hope things settle with your pallete Jan and that your husband’s kidney function repairs soon Suzi.
Regards
Linda
I had a similar situation a few years ago, not terribly long after my SC treatment. It turned out to be no more than calcification. Not sure of any link between Myeloma and breast cancer. Good luck
Linda Winton
I know and understand how you feel, there's times when you would just like to go back to normal, unfortunately we can't . It does get easier to cope with the more you know about it. Sadly the bone pain is a constant reminder but if you can get that under control you will feel loads better. I have not been to a mm conference before so it will be interesting I'm sure. There really is a lot that can be done at each stage. Do speak to your consultant he should be able to tell you just what's going on, why your on what treatment and what he proposes or speak to Ellen the myeloma nurse at Meyloma UK. I told my kids that mm wasn't cure able but that it was treatable so that gave them hope. Not telling your boys that it is not curable may well be the right thing to do, you know them best and they have been through a lot. I would caution that they could easily find out if they research it, will they be upset at you not telling them?
What damage to your bones do you have? I have two damaged vertebrae and a lot of pain in my ribs and pelvis, think I've said before its fairly well controlled with slow release morphine.
Will go for now, will let you know how the conference goes-staying in a hotel by myself the night before, just hope I don't sleep in!
Take care,
Linda
Hi Ann, good to hear from you,
A wee cruise sounds good. If you both feel well enough you should go for it.its such a benefit to do things that are normal. You may find your not as able to do as much as you may previously have done, but just to be away and spend quality time together I'm sure would be lovely. We had to cancel our 2 week med cruise which we had booked for our 25th wedding anniversary. I had booked it in March for the following Oct but it was just too big a trip, I had just finished by six sessions of chemo and was due to have my cell harvest done and I just didn't feel fit enough. Since recovering we have had some great holidays to Egypt, Tenerife, London, Spain twice, Portugal. We are determined not to let mm rule our lives. That said, the bone pain and the changes we made with regards to what I now can't do is a constant reminder that mm is very much part of our lives .
I'm going to a Myeloma information day next weekend, haven't been to one before so looking forward to hearing what the experts have to say.
How did your family cope with your diagnosis? My children were 20 and 16 at the time and once over the shock and tears were very good and never doubted I would make a good recovery. I'm so thankful to both them and my husband they are what keeps me going. Unfortunately Mike now has to do a lot more round the house but never complains.
It's late now will stop talking and catch up another time.
Enjoy your break.
Linda
Morning Jan,
I was interested to hear about your pain medication, I like you don't do hoovering or at least not much, I can manage a quick run round the lounge but can't do the whole house or lift the Hoover upstairs because of pain, Mike does a lot for me. I still do shopping but prefer where possible someone to come with me as I can't push,steer a shopping trolley or carry the shopping, if I go myself I have to buy a little at a time and use the basket trolleys usually reserved for the elderly. I often end up doing too much and have to come home for a rest and some backup pain killers.
I will need to stick to my role of referee and not play netball as I am suffering today but hey ho I should have known better.
I only work on Mondays Wednesdays and Fridays which is perfect as I always I'm one day away from a rest. Y work have been very supportive throughout my illness, I had a full year off with six months full pay and six months on half pay. When I return I could only do a few hours per day then gradually over a period of four months built that up to three days. Before being ill I ran the school office on my own working 4 days per week (it just a wee special needs school) but it was full on. When off the school made my job full time but I didn't want that on my return so they allowed me part time. Now I just answer the phones, coordinate meetings, deal with visitors, I don't do anything that requires concentration as the morphine and my lack of confidence don't allow it. Not the same job by any means but I'm happy to be able to be able to lead a semi normal life.
I've heard of the need to drink plenty fluid especially if your kidneys are affected, so far I've not had any kidney problems only bone pain. I can't lift much but I am guilty of doing a little bit more than I should and then pay for it later.
Do you attend a support group of any kind? I do and find it very supportive. I'm off to an info day next Saturday, I've not been before so looking forward to hearing about new medications, trials, and chatting with others in the same boat.
Will go for now, take care
Linda.
Evening Jan,
Thanks for your reply. Have caught up with my sleep now. Made a big mistake at school today and played a bit of netball with the staff and kids, they were short and I didn't want to let them down so I did the centre passes only and have spent the night in a lot of pain. I should know by now not to do such things but when you feel fine you forget about the cancer and think you will be fine. How wrong I am.
What pain killers do you take for your vertebrae. I am currently on 20 mgs of OxyContin at night and 15 mgs in the morning and that usually sees me through. The hardest things to do are around the house, hanging out and bringing in washing is hard pealing potatoes is torture, lifting and pouring pots -anything which involves having my arms outstretched causes me pain.
On the plus side I have so far had a good response to my treatment and long may that last. I was 44when I was diagnosed and my children were 16 and 20. They and my husband are what's kept me going. Megan who is 21 now is due to get married next year and it so special to be here to be part of it all. Our son Martin has just moved into a flat with his girlfriend and again is great to be here to see them happy.
Do you find you have to give in to your tiredness much. I can happily sleep 12 hours then be napping an hour after I've got up. I'm much better if I have something to do like work or socialise.
Look forward to hearing from you.
Linda
How do find your energy
Hi Ann, good to hear that your pain relief has gotten less. I take 20 mgs of OxyContin at night and 15mgs in the morning, I then have 5mgs of breakthrough which I can take at anytime. If I started to need a lot of breakthrough then the GP would up my daily doses. I still get tired easily but nothing like when I was having my treatment.
Glad to hear your husband has come through his cancer. Remind me how long it was since you were diagnosed.
It's a pity your not able for your holiday yet, maybe a wee weekend would suffice until you feel stronger. we had to cancel a special cruise we had planned for our silver wedding anniversary as it landed right in the middle of my treatment. My consultant said I could go had he would hold the stem cell process but I didn't fancy going on holiday bald, tired and with my Hickman line still in so we cancelled it and managed a wee family party instead.
With regards to support I go to a support group in Perth which is great, if you call or email Meyloma UK they would be able to tell you where your nearest group is. If there is not one nearby call Ellen again at myeloma UK she is full of useful information and is very supportive.
How do you get in with thalidomide, I've never had it. All I have to do is have a monthly infusion of bisphosphonate which I I'm fine with. The staff at my clinic are just great and let discuss any worries or concerns.
Will stop wittering on now but if you have any questions I can help with please do ask, happy to listen and help.
Linda
Sent from my iPad
On 8 May 2013, at 00:26, noreply@myeloma.org.uk wrote:
Dear Lindawinton
ann1955 has posted to a discussion you're monitoring:
Subject:
RE: New
Message:
Hello Linda
Thanks for your message.
How much morphine do you take for your back pain? I have cut down on a lot of my medication since the consultant upped my Thalidomide to two tablets per day, I am starting to feel more like my old self, but I do feel very tired sometimes, like yesterday I just laid on the sofa and slept. As for support I do not know of any around here, I do not even know who to contact for help if I need it, maybe my fault as I did not take in all the information in when I first saw the consultant.
Well done for being in remission for four years, I hope I make it that far, I just want to spend as much time with my family as possible. My husband had cancer last year and we were looking forward to having a nice holiday together this year but it looks like we will have to wait.
Ann
xx
Hello Ann , have been reading your story with interest. Sorry you've had a rough time. Good news that not too many vertebrae are damaged. I have only two affected but that's enough, also have rib and hip pain for which I take oxynorm (morphine). With regard to support, do you have a group near by? I do, it's a great help. We meet four times a year and discuss all aspects of M M. I also have great support from my haematology team at my local hospital in Perth Scotland. I get an infusion of bone strengthener every month and the team are like friends now. I can and do ask them anything that worries me. I have been in remission for over four years.
Good luck with your future health
Linda
