We live north of Cardiff, and I think the treatment at the UHW has been exemplary. even given that my husband was diagnosed in the middle of the lockdown. He is currently having his SCT in Singleton, Swansea, but I am not allowed to visit. Just the rules for the Haematology Ward. They are rightly being very cautious.
Hi Peter,
Just wondering how treatment is going for you now?
My husband was admitted for his SCT yesterday. It’s a hospital that is an hour’s drive away, and visiting is not allowed, but we are keeping in touch thanks to WhatsApp. He was relieved that this hospital does not suggest a nasal-gastric tube, and he has a PICC line instead. He was quite anxious about having a tube up his nose, so that’s very good news.
Personally, I am so glad that we weren’t persuaded to have the treatment as an outpatient. The responsibilty would have weighed heavily on me.
LiliB
That sounds like good news, Peter. I hope that you can achieve the right conditions for transplant in a very short time.
In other news, my husband has been transferred to another hospital for his SCT (his choice), and we are going on a visit on Monday, with a planned admission date of 15th August. I think I will barricade the front door from 5th August onwards – we don’t want any more sneaky viruses creeping in.
I’m sure that you will look very cool in your baseball cap! But seriously, even if you are outdoors to walk to the car, or water the plants, keep your hat on!
So… about the piano. Will my husband be able to play the piano after chemo? That’s a bonus – he was never able to do that before. (Sorry – very old joke!)
Well done on the fundraising, JN! We haven’t had any contact at all with Macmillan, but I presume that is because we are in a completely different part of the UK from you.
It is only in the last month (with stem cell collection) that my husband has lost his hair. It is starting to re-sprout, though. I’m sure that someone will have already told you this, but it’s really important to stay out of the sun, and certainly to wear a hat outdoors, even on dull days.
“I’m sure we will all have our stem cells back soon”
This made me laugh out loud!!!
Thanks, Peter.
xxxx
Hello JN,
Sorry to hear that you have been diagnosed with this disease, but I regarded the diagnosis as a starting point for my husband. Like you, he had suffered from increasing back and hip pain for years, and it was only when he was driven to get stronger painkillers from the GP that she decided to send off some bloods for analysis. Within days we had a phone call from the hospital asking him to come in immediately for a biopsy, and the treatment started the following day. At that point, he was unable to walk more than a few steps, and unable to drive.
After about three months of treatment, things had improved enormously mobility-wise. It is now one year since the biopsy and start of treatment, and we are waiting for the stem cell transplant, but life has resumed a semblance of normality (although we have also had to curtail activities due to CoVid).
So as everyone says – treat it as a marathon, rather than a sprint, and things will get better. Wishing you and yours all the very best!
Lili
Hi there, Peter,
Sorry to pick up on your latest news. As Mulberry said, there are lots of twists and turns in the treatment for Myeloma. My husband has not been in for his SCT yet. He went for a swab test at the hospital a week ago, and on the Monday we were told that his test showed ‘low levels of CoVid’. We absolutely could not believe it. We have lived like hermits for months, neither of us has been ill or shown any symptoms, so I can only think that he picked it up in the hospital whilst visiting the outpatients.
So we carry on waiting for a ‘slot’ now, like grounded aeroplanes in an empty airport…
<<Hubby is very much thinking all is fine and he won’t need treatment.
I’m preparing my head that it may be otherwise.>>
That very much sounds like our scenario. My husband has been totally optimistic all along, but has not wanted to read any of the information about possible treatments. I have accepted that role, and have filtered through bits and pieces when I felt it was on a ‘need to know’ basis!
I think his optimism and total faith in the medical staff has been a real blessing. He has been having induction treatment for almost a year, and we are waiting for a date for him to go into hospital and get his cleaned up stem cells back. If I’d known then what I know now, it would have been a less scary 12 months. Honestly.
Hope it is not too long before you get a treatment plan. All best wishes to you both.
Good morning, Peter. Just saw your post come up as an alert on my phone. My husband has recently had his stem cells collected and we are waiting for a transplant date. Firstly, I hope all goes well with your collection, but if it doesn’t, don’t panic. My husband’s first attempt at collection failed in that they were not able to get enough. We were, naturally, a bit alarmed at what this meant, but in the end he had to do the priming treatment again a fortnight later, and on the second attempt all went well.
As to the transplant itself, several times during the treatment we were asked if he wanted to do this as an outpatient. Each time I emphasised that I felt unable to do this because I have no ‘back-up’ – no family living nearby – so I would be completely responsible 24/7 and I didn’t think I could offer this. So far, the hospital have accepted that this is the case, and we are proceeding towards a hospital stay of 3 weeks for my husband.
I think your wife needs to be involved in the decision because it puts a lot of responsibility on her. Our hospital hands out a leaflet which says that in order to be eligible for the domiciliary transplant you must live no more than one hour’s drive from the hospital, there must be someone with you all the time who is available to drive you in to the hospital if a problem arises, and anyone who lives in the house with you must isolate for the duration.
Hope that this helps.
I have wondered how things went for Dave. Hope that he is now having a good period of remission and not having to think so much about Myeloma.
Best wishes,
Lili
Hi Northumberland,
My husband’s experience of all over rash was with Thalidomide in the first treatment cycle. It started after about 5 weeks, and spread quite quickly over the whole body. After a pause, the drugs regime was changed to Lenalidomide (which we were told is related to Thalidomide), and he tolerated that without any problem at all. It seems that different people react to different drugs, and maybe you need to talk with your experts about trying an alternative.
Hope this helps.
Lili B x
Thank you so much for your reassuring reply, jc. We tried not to think about it too much over the weekend, but hope that maybe tomorrow the hospital will phone and tell us what’s next. I had not heard about anyone having two SCTs consecutively. Hope that it all goes well now for you!
Hello Slimynose. I read your thread this morning because I just posted a query myself. My husband is the one with Myeloma, and we have just had a bit of a set-back in the treatment, and I think that is why I was drawn to your post.
I know that it is very hard to stay positive when something doesn’t go according to the plan. We have been looking forward to the transplant, and now it may not even happen, so I can understand your reluctance to talk to the consultant for fear of getting more bad news. However, things can go up as well as down! It must be hard to explain things to your children, especially if you are feeling uncertain about things yourself, but try to keep in mind that this is one of those diseases for which new treatments are being developed all the time, and at your age, there might even be a cure by the time you reach pension age.
Do talk to your consultant. And do tell him/her that you are feeling mentally ‘brutalised’ at the moment.
Keeping my fingers very tightly crossed for you.
Lili x
Hello mbb,
Sorry to hear about your family troubles, and now with your Mum being diagnosed with Myeloma on top of everything! You asked about what she might expect, and how this may impact on her mobility, etc., and I can give you my experience of being the wife of someone with MM.
Firstly, I am so glad that we moved to a bungalow before all this happened. Secondly, I am glad that we live within 5 miles of the hospital where my husband has treatment, and that we have our own transport. My husband is in his late 60s, and the consultants have always taken the view that he will go for a transplant when the time comes. The past year has been a long round of weekly or twice weekly visits to the hospital, and a huge schedule of drugs to be taken every day at home. It will help your Mum if you can attend the consultant’s meeting with her and meet the Clinical Nurse Specialist(s) who will be organising her treatment. Then, you will need to work out how you are going to get her to and from the hospital. And who will ensure that she takes the right tablets at the right time of day. My late mother was a District Nurse, and I reflect on the fact that this is the sort of work she used to do, but sadly, I don’t think this type of treatment is undertaken at home any more.
I hope that you manage to find a workable solution for your Mum. I really don’t know how people who live on their own manage to do some of the things we have had to do. My husband was not able to drive at all for the first six months – just because it was too painful – but his mobility has improved enormously since he started the treatment, so perhaps your Mum will get a bit better than she is now in time.
All the best,
Lili
Hi Peter,
I’m no expert, but I think it might be an idea to get in contact with your Clinical Nurse Specialist, or whoever is your Key Contact. My husband finished his last cycle of induction treatment two weeks ago, and we already have dates for the SCT procedure. There are two stages – firstly the cell collection, and then, as I understand it, there is a pause of at least two weeks before the hospital stay. We are being told to isolate as far as is possible for the whole of this period.
Hope this helps.
Interesting what you said about coming off the steroids – my husband says he feels ‘really well’ at the moment, now that he is not taking the chemo meds and steroids!
All the best,
Lili
