Hi @CeliaS thanks so much for joining our forum and I always find there is something I need to read.
I find it wonderful to realise that I am not the only one feeling and thinking like I do.
You say that you are at the end of your rope on the isolating and feeling like you can not do it anymore.
You are certainly not the only one thinking and feeling as you do, upon occasions, perhaps the problem comes when it is all the time.
Do you have any support from family and friends?
I really miss the social interaction, a hug, a laugh, normality etc.
However I find phoning, texting, sending or receiving a card helps me.
We have been isolating for nearly a couple of years now, itâs a long time, I think we are all doing brilliantly.
I have recently found on the Blood Cancer UK website under support for you, then mind and emotions some handy hints which I have found helpful.
Also if you would like to talk to someone the Blood Cancer UK support line is there for you to talk to someone.
Your GP might be able to suggest some counselling options, if you feel that would help, Macmillan cancer care also have counselling services. The Samaritans are also there 24/7 on 116 123.
Please let us know more about you and how you are feeling when you pop on next and look after yourself, we are all very special people
Hi @CeliaS
Youâre definitely not alone. Itâs been such a tough time for people like us, and we donât have the certainty of a real end to it, that others might have, because of our higher risk.
But weâre still here, somehow getting on with it. We deserve more than a medal for our tenacity and patience.
And yes, thank goodness for places like this, where we can say how we feel. Itâs a bit of a life saver on bad days. Thereâs always someone who can help lift you up. I hope you post whenever you need a boost.
Completely understand how youâre feeling @SunShine77 and @CeliaS . I miss everyone. I do occasionally see a friend for lunch or a drink but mostly am on my own. As far as work is concerned, there really isnât a social life there. We had a staff get together in the summer but it was sitting on the grass on the College Green with bring your own food and drink. No Christmas party. I made up my mind when I was diagnosed that it would save time if everyone I worked with knew so I sanctioned my boss telling them. Apart from some initial enquiries when I came back to work, most people have really forgotten that I ever had cancer now as I havenât been off work much in the meantime.
Hang in there and welcome
Thank you! Yes. Strange times. I live alone and am super extroverted so this has been tough! I appreciate your kind words totally agreed. Have a great weekend!
Lyn99
Hi, I note from your comment that your back has been damaged by myeloma and that you are now wearing a back brace. I have several compressed vertebrae in my spine from myeloma and am curious to find out if a back brace can help with mobility. I was only diagnosed end of August last year so am in the early stages of treatment but find that my back becomes very sore if I move around for only a few minutes with my crutches.
Hi @Anita, sorry to hear that your back is damaged too. I was walking with a stick, had painful ribs and had to leave work as I was in too much pain to sit at a desk. The treatment helped greatly, no more rib pain, no stick and now started gentle jogging, but I too have been left with a compressed vertebrae just at the base of my ribs where you bend. This still makes my back ache whenever I try to do anything. Not the horrible initial gnawing pain but still debilitating.
I tried a number of braces but the best for me was just a stretchy band about 4 inches wide that I wear round my lower back and a velcro cross over closure, sort of lower round my front. This helps me greatly and seems to reduce the pressure that you feel and allows me to do more before I have to sit down.
The medical team just wanted to dish out painkillers which initially helped a little but I wasnât keen and it didnât really address the feeling that your back isnât strong enough to hold up your top half which is where the brace helps.
I have recently had a follow up MRI and they may offer verteboplasty which fills the collapsed vertebrae with cement which Iâm hoping will be a longer term solution.
I have also started to do a couple of gentle exercises, where I lie on the bed with my legs bent and lift up my bottom clenching as I do and also gentle lunges, one leg bent and lean forward, then the other. Apparantly your bottom being strong supports your lower back too.
I would check with your medical team that this is ok for you. Mine did say gentle jogging was ok for me and the gentle excercise certainly improves the muscles in my back but it might not suit everyone.
Hope this helps xx
Lyn99
Many thanks for the information re the back brace I shall ask my physio when I next see her if they provide one. I have been given some very gentle exercises to build up the muscles in my legs, I think jogging is a long way off for me. Unfortunately I have several compressed vertebrae so currently need to use crutches to get around and my back does get sore after a while but I have come a long way from being unable to weight bear due to myeloma in my right hip, I had to have radiation to get rid of it, to now being able to walk although with aids.
I have just come out of hospital after being an in patient for six days with a chest infection but feeling a lot better now. Only now realising how vulnerable we are to infections whilst on chemo. I start my fifth cycle of treatment on Friday and at the end of this cycle I have been recommended for a stem cell transplant. I am obviously terrified but if it enables me to have a more normal life then Iâll have whatever it takes.
Once again thanks for your reply and good luck with your jogging and let me know if you do get your vertebrae filled, Iâm sure it will help.
xx
@Anita, sorry to hear that you have been poorly but good that youâre out of hospital now. I didnât have radiation, the normal myeloma treatment sorted my right leg. Thatâs great you have a physio I was never referred to anyone and it would have been really helpful. To be quite honest I never thought I would be able to jog again but just walking is great even with a little help if you can, just to keep active.
I had my stem cell transplant in August of last year, please try not to worry, the thought of it is far more scary than the actual process. I really only had a few days of discomfort with sickness and diorrhea just after the high dose melphalen which was quickly controlled but other than that it was quite straight forward for me. I did have antibiotics for the duration but it was really a waiting game whilst the neutraphiles got back to an acceptable level. You will probably need some blood and platelet transfusions just to support you but It took 3 wks and a few days and then home. I really appreciated having a TV and my tablet to WhatsApp family whilst in hospital.
You canât do very much to start with when you come out from hospital until the blood levels rise but you feel a little better each day and after about 3/4 months I felt pretty normal. If there is anything you want to know about the stem cell transplant please donât hesitate to ask. XX
Hi @Anita sorry to hear about your chest infection it sounds nasty.
Yes, obviously you are terrified about the scary, unknown of a Stem Cell Transplant. There is a long thread on here about those awaiting or undergoing a stem cell transplant which might help you slightly, there are quite a number of people who have had different types of them on this forum.
@Anita and @Lyn99 I realise that this is very different from your experiences but over the last 10yrs I have fractured and compressed 7 or 8 lower vertebrae and lost 5in in height and also have a curvature of the upper spine. I was felt I would end up wheelchair bound in 2012.
Yes, my back can still be agony at worst and chronic pain on a daily basis.
I walk every day as I was told that it is the best load bearing spine strengthening exercise and I also do pilates every day which has really saved me strengthening my core and muscles to help support my spine.
I also had a back brace initially for a while to use if I had to stand for any length of time but I was advised not to use it too much otherwise my spine would not gain strength as it would get to rely on the extra support of the back brace.
It has been a long journey and I am on an annual infusion drip, pain killers and calcium tablets.
The last vertebrae I fractured about 3 years ago was when I tried to do some jogging !!!
Yes, it is very much baby steps, literally, although I re=iterate my experience is very different to both of yours.
Look after yourselves and please keep posting
Hi @Anita,
Iâm sorry to hear that youâve been unwell with a chest infection and wish you a speedy recovery.
I agree with you that the thought of a stem cell transplant is very âscary unknownâ - that sums it up exactly - but from the other side, Iâm really glad I went through with it.
I hope youâve had a chance to checkout the thread that @Erica has recommended where lots of us have posted our experiences and tips. Its obviously different for everyone but its a very clever treatment and I hope you will feel a bit calmer about it and be confident in making the best decision for you.
Hi @Anita youâll be ok with your stem cell transplant. Itâs not fun admittedly but the vast majority go very smoothly. Itâs just a bit long and laborious but thereâs always an end in sight and better days.
Hi Franko
Thanks for the encouragement re stem cell transplant. I would like to know how wiped out you are after discharge from hospital. My husband has quite serious health issues and may not be able to look after me once I am home after the transplant. Can I make myself a cup of tea or will I be bedridden. My daughter can come round to give me meals or will I have to ask for outside help.
Thanks
Anita
Hi Anita. Itâs not a one size fits all. Different people will react differently to the same treatment. For me, I felt physically weak for about a week or so afterwards and couldnât walk any great distance without needing to rest. It didnât last very long and I think most of it was due to the fact that whilst I was in hospital I didnât get up much from my bed. Had I walked a bit every day instead being indolent, I would have been in better shape. Within a couple of weeks of being discharged though, I was going on holiday. I wasnât up to great feats of physical endeavour but I was ok and able to do things. As I say though, none of this is an exact science. You might react differently, but you should have a good idea how things are going whilst in hospital as they do daily obs. Good luck with this and if you need to know anything else, let me know.
Perhaps @Anita you will know more when you are in that position.
I know I am useless at this, but perhaps you will need to ask for and accept help in the short term.
It might be worth having an honest and open conversation with your daughter and even explore outside help. Obviously you might have to pay for some help, which is a big consideration. Gardeners, odd job help and help with housework etc. can help so much psychologically for both of you too. Of course they will probably never do things as well as you !!
Macmillan cancer care and local voluntary groups might be of assistance in exploring options. Macmillan are based in most major hospitals and have a website.
Be kind to yourselves
Hi @Anita,
I was lucky that my husband did most things when I got home. I think I took longer than @Franko to be able to get outside but I was up and about at home and able to make tea, do the odd snack and generally look after myself. I did have to rest between doing things and I couldnât walk too far to start with. You do lose muscle mass in the hospital room so if you can do some basic excersise it helps. Just getting up and down from the chair a few times stops your legs getting too weak. I used to try to walk a little in the room but itâs difficult pacing in such a small area. I always had a bath every morning which made me move and helps to prevent infections. As @Franko says everone is different and it probably helps if you are fitter before you start. Xx
Erica
Thanks for the advice. I shall look into available help nearer the time. According to recent correspondence from the hospital my stem cell collection is scheduled for 22 & 23 March (may take one or two days depending on how many stem cells are collected on the first day) so will give me enough time to prepare lots of food/soup to freeze. My family are aware of the dates so hopefully we can come up with a rota. I have lots of walking aids to help me get around and our bungalow is quite small so keeping it clean shouldnât be a problem. I will get a gardener to sort out the garden but hopefully will manage everything else.
xx
Anita
Hello all, Mind me asking how youâre all getting on? Hope youâre doing okay.