HI, the softest loo rolls you can buy. All the very best.
Hello David,
Many thanks for the positive update,you are an inspiration . My hubby is on cycle 21 of Daratumumab monthly treatment,and so far so good and this gives us great hope for the future,we have been following you from the start of the DVD treatment. So just wanted to say a BIG thank you for posting,
The very best wishes
Ann
Hi Squirrel,
In answer to your question about hubby’s spinal brace, he only had to wear it for 6 months, mainly to stop any further damage to his spine and sternum, the brace fitted from just under his chin down to his waist and the results where amazing, because of the spinal fractures and the sternum also fractured his head and neck went forward and he lost 5 ” in height the brace stopped any further movement going forward.
It was made to fit at Stanmore hospital a very long journey from rural Wales, but so worth it and it was a real eye opener how many Myeloma patients where having braces fitted.
Here’s hoping that you get your pain under control, (dont put up with it) thats what we were told many times, once it is under control and treatment starts you will soon be looking forward to getting the seed catalogues out and planning the garden again wishing you all the very best.
Ann
Hi Squirrel,
My husband was taken to A & E back in 2017, having been suffering from back pain and rib /chest pain for a very long while, Loads of GP appointments send away with painkillers aged (62 ). To cut a long story short he had 7 spinal fractures and a sternum fracture. Six weeks in hospital treatment started straight away, fitted with a spinal brace.
We have a small holding and a very large veg plot poly tunnels etc.
Once the pain was under control morphine ( which he still takes a small dose ) and Oromorph for breakthro pain. He had a Stem Cell transplant in 2018 and remained free from treatment until 2021 when he had a relapse, treatment 2nd line
DVD which he is still on and remains well. The garden is still his passion and with a few tweaks he manages without help.
A few tip’s if you have raised beds, alter them to a good height to save bending, like Mulberry a wildlife area is a wonderful addition and will bring you great joy, take your time you wont think so now but you will get back to a new normal ,we where full of dread and thought we would have to give up the home and land that we had worked so hard for and many tears shed, always have hope ,always except help and look forward to planning each gardening season.Bets wishes
Hello, Glad to hear that you have had a better day,Hubby like you are finding could not get in a car with the brace on,and because of the sternum and spinal fractures coulnt bend anyway, so we where very lucky to have an amazing patient transport service here in west wales who arranged an ambulance from the equally amazing red cross to take us to Stanmore and other appointments in hospitals like Swansea and Cardiff. This meant that he could either go up on the ramp or climb a few steps and then travel on the “bed” with the back raised. When he had clinic appointments approx 20 miles away for chemo etc a normal mini bus type transport was arranged thro the hospital, perhaps it is something you could look into try your nurse for details. Hubby is doing very well thank you for asking had a SCT in 2018 and had a relapse at the back end of 2021 then started on DVD and is now on just the Daralex monthly jab and dex.
Everything crossed he is keeping well at the start of DVD light chains 500 now under 2. When diagnosed in 2017 lights chains at 2700 and again they got down to 0. He keeps active and apart from aches from how the fractures have left the shape of his neck enjoys life to the full and remains very positive. All the best and again anything we can help with just ask, we are all in this together. Best wishes Ann
Hello,
Hubby had to wear this type of brace for 3 months, as when diagnosed it was back in 2017 and his route was thro A & E, he had been going back and forward to gP with back and chest pain for several months, ( sadly this is the same old story for many ). One day his sternum just snapped and it was all systems go, 6 spinal fractures and a broken sternum later, 6 weeks in hospital trips back and forth to Stanmore ( we are in Wales ) to have this brace made and fitted.
He has lost 5 inches in height , but leads a near normal life, or as we say the new normal.
After about a week in the brace it became bearable, although very hot. The main thing it WORKED and stopped his head from going any further forward, he got around ok in it, and I was ok and doing up the straps etc.
Tips; are t shirts under it and loose fitting baggy shirts over it and body warmer type garments help in making it look a bit less noticable. Hope this helps and try to be positive it really do’s help. If you have any other queries please ask. All the very best.
Ann
We live in West Wales hubby treated in 2017 at Carmarthen hospital, then had SCT in Singleton 2018 and the treatment and care have been first class, being very rural transport to Cardiff for harvesting and SCT at Singleton Swansea could/would have been a nightmare but the team at Carmarthen sorted it all out with the wonderful patient transport service. Pre covid visiting allowed at Singleton’s dedicated SCT/Bone marrow transplant unit. All the very best.
Hello Clare,
Reading your posts takes me back to May 2017 when my hubby was an A&E emergency after months of back/ chest pain dozens of GP appointments and all the rest.
His sternum fractured causing him to collapse he had 6 upper spinal fractures and was in hospital for 6 weeks.
Like you I was desperate never heard of MM and joined this forum, got all the help and hand holding that I needed at that very tough time.
Terry has lost 5″ in height and his head has gone forward as a result. We went to Stanmore OH to have a spinal brace fitted and he wore this for 3 months, was in great pain to start , but it got better (take what pain relief you need ). We had to travel to Stanmore by ambulance as he could not get in a car not an easy journey from Wales.!!!!!!
He had a SCT in March 2018 had complete remission and everything crossed remains so.
Terry was told life will never be the same again, we have a small farm and was allways very active and for the time until the SCT and the recovery after he had to have little fitness goals which we ticked off in a book.
Since then LIFE is good, not the same but just as good, we still have the farm he is just as active aches a bit but dont we all, is careful with heavy lifting but is on the go all the time.
We are positive and are thankful for all the advances in treatment.
Hope this helps, I’ve not posted on the forum for a very long time, but your post “got to me” take care of yourself and hubby as well the pain will go away, life will get better.
Stay safe
Ann
Hello Julia,
Bureaucracy gone mad, I think the lunatics are running the asylum. email the jobsworth and saying you are a victim of “ageism ” absolutely crazy I am climbing the walls for you, and sometimes it really does feel like the world is out to get you and indeed “why us “.
Rant over,
the little pill pot is great we are now both agreed !!! Terry’s thalidomide has always stayed the same at 50mg and he takes 2 at night.
Chemo starts again Tuesday cycle 3 and so far so good re side effects also on Tuesday he is down for his 2nd bone strengthening drug (forgot what is called at the minute, brain has gone to mush, or it has gone on holiday ). we expect Tuesday to be a long day as we will have to wait for new meds etc, we are trying to embrace (how about that for a feel good word ) our waiting time by reading and doing puzzles !!!!!!!!!!!!! who are we hoping to kid.
we don’t know as yet how long Terry will have to wear the brace another one of life’s little surprises but if it helps what a wonderful thing to have made for you.
Hope you have had a good weekend, don’t let the burocrats ground you down, as always love and gentle hugs to you all
love Ann xx
Hi Julia,
What a hectic few days we have had,
Monday the ambulance collected us at 6.00am and we arrived at Stanmore at 11.40 in good time for our noon appointment, the journey was good and Terry dozed most of the way, he had the bed in the ambulance. We were lucky to see Mr Molloy who was lovely, Terry had xrays and examinations and we had good news and not so good news, so first the good news;
The xray showed that Terry has made new bone at the fracture site so it is starting to heal itself, so no need for intervention.
The not so great news; They cant do anything to help his sternum fracture, it will always be collapsed in and so his posture will always be stooped and his head and neck thrown forward, he said Terry will never be able to carry out heavy manual work again and at the minute his spine is in a grey area, neither stable or unstable !!!!.
How ever he can make him a new and better brace and we will go back in 6 weeks for it to be cast, and this should help. Terry was gutted with this news and understandably very upset, his whole life has been very active and manual and involve the love and care of animals both great and small, so the journey back was long and we arrived home just before 9.00pm.
Tuesday we had to go to the clinic for our 1st review and honestly Julia, after Monday I was dreading it, but it went very well and at last some excellent news, Terry is responding to the treatment, blood test for line chains excellent, new bone deposits on his spine encouraging, so round 3 of chemo starts on Tuesday the 1st of August. This news lifted our spirits and we came out very happy and Terry admitted it helped to take away the shock and disappointment of Monday, we know it is still very early days on this roller coaster that non of us want to be on, but you have to savour the good times and those little steps.
Yesterday I was at the dentist for a check up so that’s all well for another 9 months, and today has been spent catching up on jobs. Thanks for the info about the PIP have rung today for the forms, like you we have never claimed a bean. Terry is on the jabs to the tummy and carriers out this task for himself ( we had to ask the chemist for a “sharps box ) they are free if they have not provided you with one. So glad to hear that Steve’s mobility continues to improve, little steps back to independence and the new norm ? Yesterday I bought one of those pill box things that have days and am /pm on them for the sack full of meds I think it will help, the jury is still out on this one.
Nearly time for tea, so love and gentle hugs to all
love Ann xxx
Hello Julia,
Well what fantastic news, Steve is home you and Daisy must be thrilled, the sack load of medication is daunting at first but again it is amazing how used you soon get to this being the “new norm “. Terry has been on Thalidomide all the time, its strange how consultants have different ideas, but as all the “old hands at this game ” say every one is different. Terry was emotional when he came home, I think part of it is that while in hospital they are “safe ” and home is the unknown what ifs !!!!, but like us its a whole new journey that none of us had planned so we all feel a bit at odds as we go along with our little steps,
Monday is fast approaching and we are a little nervous but it is a wonderful chance and we must make the most of it, it will be a very long day and then Tuesday we are back in Carmarthen for a “review ” after the 2 rounds of chemo . On the outside I am trying to be positive, but inside I must admit that I am a total mess, again it is those dam “what ifs “, but still it has to faced and I expect that sometime soon these reviews may become the new norm.
Yesterday ( Friday ) Rain rain and more Rain it never stopped but we didn’t get a storm, today is a bit overcast but dry.
Lovely to hear from you, enjoy your weekend together,
love and gentle hugs
Ann x
Hello Julia,
We have had a very hot day , it has been very “heavy ” and Terry has found it hard going today, his brace is so awkward and heavy so has spend most of the afternoon in bed were it is much cooler.
the red cross contacted us today about next Mondays trip to Stanmore they are picking us both up at 6.00 am, so it will be a very long day, but we are hopeful that it will be worth it and they can help his spine and sternum.
I think Steve is right to wait re the bungalow, it is a massive decision and when he starts to get more of his mobility back you can make the best choice then, I think back to May the 21st only a couple of months ago how Terry struggled with the pain to get about and now although he is in a worse state with fractures and his sternum and his brace he gets about albeit slow but the pain is not as intense and hopefully he is on the mend now that he is being treated. Is Steve still on his chemo we are on a two week break and its lovely.
So pleased your hair appointment went well that another hurdle over, our lives seems to have become one challenge after another some huge and some little, and sometimes the little ones seems to take more courage, strange that.
Any more news on Steve’s maybe or maybe not operation ?
Hope Daisy has not struggled to much with the heat, we have been forecast thunder storms tonight, hope the power stays on, and the internet. !!!!!
night night,
gentle hugs all round
love Ann xx
Hello Julia,
Well we are back on air again, lost email for a couple of days, BT have been promising us a new phone line for about 4 years but their are only 4 of us and about 2miles of underground cable to be replaced ,so we are not even low priority we think we are no priority not a hope in hell any time soon.
Great news about Steve he must feel loads better to have the catheter removed one more step towards the new normal. So far so good with the chemo Terry has pins and needles in his hands and gets breathless today was his last chemo of cycle 2, so 2weeks break. we have had good news from the ambulance service they will fund the trip to Stanmore and the red cross are taking us. Glad that Steve has other guys to chat to, are they all newly diagnosed as well.
Dinners in hospital have certainly improved and are excellent value and it saves on the washing up. Like the sound of that purple hair, might give it a go get rid of this mousy(who am I kidding ) grey like barbwire mop.
Sleep tight gentle hugs all round
Love Ann xx
Hello Julia,
Well chemo Tuesday again, hope Steve’s went well, again ours was a very long day, due to transport and waiting for the chemo to be delivered to the unit. So happy to hear that the MRI was encouraging we need all the little or big lifts we can get. It is a worry when at last they come home, we have now got into some sort of routine, breakfast wash dress meds etc, but it takes time, as much as we want them home, the anxious responsibility weighs heavy at first, but we can only try and do our best we are human after all, and it is lovely to have Terry home, little things we are take for granted like watching TV together, much better then being on your own.
No one has mention stem cells at all, in fact we have had little at all information about the state of Terry’s myeloma, which to be honest suits us fine, we no nothing about light chains or other indicators proteins ? or such everything happen in such a rush at the start, and when I ask how things are going, they say in the right direction which I know this makes me a wimp for not asking more, but it suits me just fine.
Good luck with the hair dressers, if the glances start, go for a radical hair colour, then the glances will be different at least. ( here I go presuming that you don’t already have pink or green hair ) hey it brightens the day.
Nighty night, gentle hugs to all
Love Ann xx
Hello Julia,
Very glad to hear that Steve is making steady progress, and that he has other visitors it will take the strain of off you. A nice nearly normal day sounds good, we have had a near normal day today a friend came round to help me with a bonfire and stayed for lunch and chatted “garden ” idea’s with Terry, I am just the “gofor ” so that was near normal.
It seams like Lewis is coping in his own way and as time go’s on it should get easier for all of us.
My shift went well, only phoned Terry once, and again that was near normal and it was good to get out and see other people who knew nothing of our situation and didn’t pussyfoot around or give those “sad glances ” do you get those ?
Only go back to work when you are ready, I am very lucky with the support that I have been getting, to be able to start back/stop when I want absolutely no pressure.
Fingers crossed for Steve’s MRI scan,
Sleep tight, gentle hugs to all,
love Ann x
