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Hello Julia,
Glad to hear that Steve has started physio as you say little steps. I have been a little blind to what Terry can and cant do, I had not realized how much needs help to wash and dress and just how bad the side effects of the thalidomide are for him, the breathless side of things makes him very tired, and the pins and needles in his hands are a worry to him, still I think he has only 2 more days to take them, we will get more info on Tuesday when he starts the 2nd cycle of chemo,
Had some good news on Friday he has an appointment at the NROH at Stanmore in Middlesex on the 24th July to see a consultant about his spinal fractures and if they can do anything for him. Fingers crossed. Terry is still wearing the brace and it is very uncomfortable so we both hope that Stanmore Hospital can help.
Poor Daisy missing her dad, it is bad enough for us and we know what’s going on, 3 of our sheep dogs are from the rescue, Brodie, Meg and Paddy and originally they came over from Ireland, a very kind group of people rescue them from “death row ” in the Irish dog pounds, then a Welsh recue centre bring them over to Wales and England to give them a better chance at finding a home. We are a soft touch, but there’s nothing wrong with that, if more people loved their animals the world would be a much better place.
Glad to hear that you went out for “tea” it makes all the difference that bit of normality.
Take care and gentle hugs and hope Steve continues to make steady progress,
Love to all
Ann xx
Hello,
I have been reading your thread and I was interested to see that the Thalidomide might be causing your husbands breathlessness? My husband had a few months of Thalidomide but it was stopped when he developed Neuropathy. However, he has been troubled by a phlegmy cough and breathlessness all through his treatment. He has been given inhalers by the lung consultant which haven’t made any difference and will be having anther lung function test this month to check for any changes. The doctors don’t seem to know what is causing the problem but don’t seem too concerned, they just want to ensure he is fit enough for his SCT.
I hope that both of your husbands begin to feel more comfortable as time goes on.
Teresa
Hello Ann
It is quite alarming how much assistance they need at home isn’t it, I don’t know how we managed before he was admitted. I must say, I am really scared at the prospect of them sending him home with the limitations he has just now. He was feeling really nauseous yesterday, but he had had some chemo on Friday, so maybe it was from that.
I’ve been today, and although he didn’t feel sick, he was really fatigued. They had wheeled him into the disabled shower this morning, which he enjoyed, as he hasn’t had a shower for 3 weeks, he was absolutely exhausted afterwards though.
Good news about your appointment for Terry in Middlesex. I hope they can do something for him. How will you get him down there Ann? They haven’t mentioned surgery to Steve, not since the first day he was admitted.
Heres hoping that things continue to improve for us all, it is certainly a journey !
Love to you both, and your doggies.
Julia xx
Hello Teresa
I hope things go well with your husbands SCT. How long has he had Myeloma?
I don’t know much about the treatment, well not in much detail. I never get to see the dr’s as their ward rounds are in the morning, and visiting starts at 2. But breathlessness is a side effect of thalidomide I believe.
Best Wishes to you.
Julia
Hi,
Thanks for your reply. My husband was diagnosed in December. He developed a drug rash after the first cycle so everything was stopped apart from Velcade and Dex. Thalidomide came back in cycle three but then when the Neuropathy began it was again stopped and the dosage of Velcade was reduced. He had five cycles in all and his bloods were showing excellent results so he was booked for SCT in June. However, his bone marrow still had 50% Myeloma cells which was a surprise to everyone so he is just finishing his second cycle of Cyclophosphamide and Dex (no Thalidomide) prior to having another bone marrow biopsy to determine if he can go ahead with SCT.
The breathlessness is very debilitating, if it wasn’t for that he could carry on with life as normal because he’s had few other side effects. I was beginning to wonder if its due to lack of activity because he had severe constipation for nearly two months pre diagnosis and was in agony and could barely move so was off work and then was signed off for another three months at the start of Myeloma treatment. He has never been a very active man, not one to potter doing household/gardening jobs and when he was advised to avoid heavy lifting because of Ostopenia he basically became attached to his armchair. Thankfully last night he decided he didn’t want to become an invalid and will begin some gentle exercise to try to get some strength back in his arms and legs. I’m hoping this will improve his lung function too.
Have they put the pins and needles in your husbands hands down to Neuropathy?
Teresa
Hello Teresa,
Yes the doctors have put the pins and needle down to neuropathy and the bresthlessness down to the thalidomide and/or his fractured sternum. He starts his 2nd cycle of velcade tomorrow and Friday, thanks for the good wishes has your husband had any other bone marrow biopsy since December and do you know when/what the system is for going for SCT, sorry to ask a lot, but my Hubby only diagnosed in May and Julia’s hubby a little later, so we are complete novices on this journey as you may have gleaned from our posts, so any tips/advice would be very welcome.
kind regards Ann
Hello Ann,
My husband had a second bone marrow biopsy in April with the third due in a few weeks.. Most people talk about light chain and Paraprotein levels in the blood and they were showing as a “trace” so when we were told about the Myeloma cells in the bone marrow being at 50% we were taken aback and haven’t been able to find anyone else in a similar situation.
SCT usually seems to follow after 5 or 6 cycles depending on blood and bone marrow results. If the next results are favourable my husband will have a day of prep, then a week later one or two sessions of stem cell harvesting. Then another couple of weeks later will be the SCT which involves a 3 week stay in hospital followed by a few months recovery. I won’t go into detail about drugs and procedures as I think you have a lot to take in already.
best wishes
Teresa
Hello Julia,
Hope you are finding that Steve is a little better each day, and I bet he enjoyed that shower, sadly we only have a bath, so it is still top and tailing for Terry, we need to look into getting a walk in shower or something, our big problem is water pressure so we may need a pump !!!.
Have been on the phone a lot today re transport by ambulance to Stanmore, in the end I was advised to ask for funding from the health board that gave the funding for the consultants appointment in the first place, so that request has gone through and should hear by next Wednesday so fingers crossed again ( At this rate I will end up with a crossed fingers syndrome or some such ). If they don’t give funding have been advised to try St Johns ambulance service and the red cross. Yes what a journey we are on, had our first visit from the district nurse today to take Terry’s blood for the chemo and her office number is listed on our who we need to contact list, we have never been so popular in our rural “No thro lane ” we are at the end so our farming neigbours and other rural dwellers know who is visiting us before we do. Hope you and Daisy get a bit more normality this week, forgot to ask is Steve still on dialysis if so how is that going. Love and gentle hugs all round
love Ann x
Hi Ann
We have a shower over our bath at home, but Steve can’t climb into the bath, he couldn’t even manage with the swivel bather that Macmillan brought us, so sponge washes were the order of the day!
We put our name on the council house register 3/4years ago, don’t know why, just a forward planning option I guess. Anyway, I was advised to submit a change of circumstance/medical need statement, which I did do a couple of weeks ago. I received a letter on Saturday, they have changed us to Band A1 priority until 26th September. This means that if a suitable property, such as a ground floor apartment or a bungalow became available, and I applied for it, there is a strong possibility that we would be offered it. Sounds great, on the surface, but…….firstly my chosen area is limited, and they rarely become vacant. Secondly, there is a real possibility that neither of us will be able to return to work, and the rent would be £98 per week. Thirdly, and maybe selfishly, giving up my home, despite it being totally unsuitable for Steves mobility problems, really makes me sad, as I feel like I am not in control, and our life, and all that we knew, is slowly being taken away from us 😪. Sorry, been overthinking today!
Well, Ann, I never thought for one minute that you may have to fund your own ambulance. When they thought Steve may need surgery initially, he would have gone to the Northern General in Sheffield. So there must be a surgeon there……that isn’t as far as Middlesex is it? It’s worth an ask at least.
Steve was taken off dialysis the night before they discharged him from critical care. They have left all the tubing in, but up to now he has not been put back on it. He still has his catheter in though.
I saw him yesterday, and he was generally ok, but extremely tired, and still a bit low in spirits. I am going again tomorrow.
well, a long post tonight eh? cup of tea time now.
love and hugs, speak again tomorrow.
julia & Daisy xx
Hello Theresa
Hope you are both well. Thank you for the further information . Is SCT offered to all myeloma patients? I don’t think it has been mentioned to Steve as yet, but I never get to see the dr’s as there rounds are in the mornings before visiting time, and certainly Steve has not mentioned it. I guess this procedure gives them the best chance of remission ? My husband was only diagnosed on 2nd June, so like Ann says, we are novices, and still trying to get to grips with all that this shock diagnosis brings.
Best wishes
Julia
Hi Julia,
Very early days for you. Our consultant mentioned SCT at the first appointment but didn’t want to expand on it until we were further down the line when he printed off the information and advised us to read it before the next appointment, we see him every 4 weeks to discuss results and plan the next cycle. I don’t know if SCT is offered to all but you are right, it is the procedure to give the best remission.
We have a couple of specialist nurses as part of the team along with an emergency phone number. Have you been given any information about them? They might be good to have a chat with if you can,
best wishes
Teresa
Hi Julia, How are things with you,it is very stressful for you to have to worry about your home and Steve’s mobility needs, you and me both are over thinking things these days, must be the ups and downs of all our emotions, mine can lurch from one end of the scale to the other within the hour, so many what ifs and as the myeloma website says no two people or myeloma’s are the same.
Yesterday was the start of Terry’s 2nd cycle of chemo, the 1st one as an outpatient what a difference from having chemo on the ward. The ambulance turned up at 9.30 our appointment not until 11.30 so we were one hour early, the day unit were running late so 12.30 before we were seen, then his bloods from the day before were a bit high in inflammation reading !!!
So had to check with his consultant if the could give the chemo, yes they could, then we had to wait for meds then the wait for the ambulance to pick us up at 3.15 home about 4.15, both of us really shattered . The journey didn’t do Terry’s back or sternum any good at all, being bounced around, and he questions how he will cope with a 4 hour plus trip to Stanmore ?. The worry never seems to go away , today he has been very breathless again although he has enjoyed sitting out in the sun, and then an afternoon of Wimbledon.
Lets home that Steve’s mobility improves so that you can stay in the home you love ( it is not selfish) and then you both can decide the whats and ifs of moving, and I totally agree that money issues start to creep up on you. I only work partime a couple of evenings a week but have not been doing for the last couple of months, so I am going to try a 5 hour shift this coming Saturday evening, not sure its the right thing to do, but will give it a try as its only a couple of miles from home, again over thinking made me say yes I will give it a go.
Hope you are keeping positive and not suffering my strange low mood/worrying couple of days I am normally a glass is three quarters full type of girl, so am finding this very odd, but hey Julia we are living in very odd times.
Sleep tight love to Steve and Daisy
gentle hugs
Ann xx
Hello Ann
Hope you are both doing OK.
Yep, my emotions are on a roller coaster ride also. Ranging from “we can do this” “onwards and upwards ” to…..total and utter despair and self pity. I think it is probably quite normal in the early stages of diagnosis and treatment. There is a cancer support centre just up the road from the hospital, I keep saying that I will pop in just for a chat, but haven’t plucked up the courage yet, but I will, soon. Unfortunately I am prone to being a glass half empty sort!
Steve is still in hospital, but picking up a little each day. He has chemo on a Tuesday and a Friday. He has had 2 units of blood this week, plus a calcium infusion, and all the other oral drugs. He is chronically constipated, so every 4/5 days they give him an enema 😮.
The main man did the ward round today, and had a chat with Steve, he was realistic, but positive, so I think that helped him. Also, Physio had him on his feet for a little while, albeit with a Zimmer frame. They have implied that he will need intensive rehabilitation with regard to his impaired mobility.
It has been really warm and humid today. I didn’t take Daisy out until 6.30pm, when it had cooled slightly, she hates it when it is hot, she lays on the bathroom floor to try to cool down! And true to form, she is now snoring away!
Night Night for now.
Love Julia x
Hello Julia,
Hope Steve has had a good “chemo day ” Terry also has his chemo on Tuesday and Fridays.
Today went well, the ambulance arrived at a good time not to early, everything ready in the chemo unit, only had to wait half an hour for transport back, job done. It has been cooler here today,how has it been with you and daisy.
I have been meaning to ask how is your son Lewis coping now, that Steve is in hospital. So very pleased to hear that Steve is progressing with little steps, the amount of drugs Terry takes is amazing I bet Steve is the same. Terry has had the bone strengthing infusion and also the calcium drip, and is about ready for another bone one. I am still hoping to try to do a shift tomorrow evening for a bit of normality but how it will pan out will be anyone guess I have not worked for 7 weeks, so if I get there will I even remember what I am supposed to be doing, brain seems to have gone to mush !.
Try to have a bit of nice normal weekend if you can, easier said then done I know.
gentle hugs all round sleep tight
love Ann x
Hello Ann
Steve is doing ok, thank you. Glad your hospital visit ran smoother than your previous one. I haven’t been to the hospital today as his mum and sisters go on a Saturday. I have had a pleasant, (almost normal) day. Had a bit of lunch out with a friend, then went to some other friends for a take away tonight. Somewhat spoilt now, by the fact that it is past midnight and my neighbours dog is howling and barking the house down. They recently lost their other dog, so when they are out it frets…..it’s not the only one! Anyway, late or not, I’ve just text them! Grrrrr.
Lewis seems ok, but spends very little time in the house. He will go and be anywhere than at home, out of sight out of mind strategy I think. He does go to the hospital twice a week, but finds that extremely difficult.
I hope your shift at work went well. Don’t know when I will feel able to go back to work, my current note runs out at end of July.
Steve had another MRI scan on Friday, so we’ll have to see what they say about that.
Well, bed time, night night. Gentle hugs to you both.
Julia
x
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