[lilibParticipant]

Petition is almost up to 11000 signatures.

[lilibParticipant]

My son has just informed me that Evusheld has been raised at PMQs today. The MP asking the question was Vicky Foxcroft, Labour MP for Lewisham/Deptford.

[lilibParticipant]

Thank you for your reply, Terry. It looks as though our hospital have their own rules/desired action, but we will certainly query the practice of automatic NG tubes when we next speak with the team. I have shown your reply to my husband and he is not being quite so negative about having the SCT now, so fingers crossed. He is quite fond of ice cream and mushy weetabix already, and the dietitians confirmed that there’s plenty of ice lollies, etc available on the ward.

The first consultant that we saw a few months back was giving us the hard sell on ambulatory care during the HDT phase, and I was very worried about that, but it turns out that it’s an option that can be refused, so I’m hoping that the NG tube is the same sort of thing.

[lilibParticipant]

Thanks for replying so quickly, Mulberry. He is at the moment attending a 4-hour consultation with dietitians and fitness assessors, so I am hoping he will talk to them.

I thought I understood from things you have said before that you did not have NG during your treatment. The thing is, I was at the consultation with him last week, and they pretty much told us ‘you will have this because it’s easier to insert before your digestive tract gets mucositis, rather than waiting until some damage has already occurred’. It really was told to us like that. A must-have.

[lilibParticipant]

It certainly does. Thanks! I have now found a reference to it in the BMJ and the i, but it’s definitely in danger of slipping under the radar.

[lilibParticipant]

I’ve done a bit of sharing to family and the local support group. I had not heard that the government had done a u-turn on the ordering. Is there a reference to this news anywhere? I like to Fact Check!

[lilibParticipant]

Hi emfen,

I’m sorry to hear about your Mum’s problems and operations. As you are the same age as our children, I am guessing that your Mum is about my age. It’s my husband who has Myeloma, and I have to say that when he was first diagnosed (by Bone Marrow biopsy), I was absolutely at sea with wondering how to deal with it. My 33 year old son was absolutely brilliant – he found this website for me, and got me lots of information and literature about the illness and the different types of treatment.

Of course, I hope that your Mum does not have Myeloma. But if she does, I can tell you that new treatments are being developed all the time. It’s a bit like having diabetes – you can’t completely get rid of it, but it is very treatable, and there are many people here who can tell you how long they have had it, and they are still climbing up mountains, doing marathons and all sorts of brilliant things.

Do come back and tell us how the test goes. Once you know what you are dealing with, there are lots of people here who can support and advise you.

Best wishes,

Lili

[lilibParticipant]

Hello there, Picard,

My husband will be going in for SCT in about 8 weeks time (UH Wales), and we have just been for a meeting with various clinicians to prepare for it. They produce a very comprehensive booklet which I have read cover to cover (the patient hasn’t, of course!) Certainly in UHW it seems that your supporting relative/friend is allowed to bring stuff in and collect stuff at a reception point outside of the ward. So if, for example, you want to wear your own clothes instead of hospital gowns, these must be changed at least once every day, but I am going to have to collect the laundry and bring it home.

There is also a list of items which are not allowed, but I’m sure you know what they are.

Hope this helps, and please come back and let me know how it goes – I would like to know about someone who is slightly ahead of us on the schedule.

All the best for a good outcome and hospital stay,

Lili x

[lilibParticipant]

Hi Peter,

So good of you to come back and let us know how you and Andrea are getting on. What a difference 11 days make! I am so glad that your wife feels able to go back to doing a little work. It will help her to get the Myeloma diagnosis into a smaller headspace, if she has other things to concentrate on! I’ve been doing the odd day’s work here and there, but then testing myself, and leaving a break in between, so that I can be sure I don’t import any nasties into the house.

My husband is also waiting to see the Transplant Team at the end of this month, so hopefully in the summer we will be able to spend even less time thinking about Myeloma and counting loads of tablets (although I am aware that for some people this is quite a challenging stage of treatment).

Best wishes to you both, and also, thank you and all the contributors to this thread, as there has been a lot which is useful to me, and possibly to other people.

Lili

[lilibParticipant]

Hi everyone. My husband is on Lenalidamide as part of his second type of induction treatment. Originally he was on VTD, and the Thalidomide caused exactly the reactions that you describe. Terrible all-over itchy rash. I think the hospital pharmacy gave him some creams and shampoo (sorry, I cannot remember the names), and he was advised to stop the VTD. After a pause of a month, he started a different treatment, and we were warned that Lenalidomide might cause the same reaction as it is a similar type of drug to Thalidomide, but – so far, no problems.

It’s fascinating how different bodies can tolerate different drugs. I am now wondering if my husband will continue with Lenalidamide after his SCT. Something to ask next time we are in the hospital.

[lilibParticipant]

Hi again, Peter,

I just read somewhere else on the forum someone recommending Ginger Nuts to deal with nausea. I remember now that I used to be addicted to them when I got Morning Sickness. Maybe these might help your wife? Other than that, I always keep a supply of Gaviscon around because I do get indigestion with some foods. But I don’t think it’s fatal. Lol.

We are both doing OK now, thank you for asking. It won’t be long until we see the Transplant Team, and my husband was pleasantly surprised to discover that at the venerable age of 68-and-three-quarters they don’t think he is too old to have a Stem Cell Transplant. So that’s something new for me to worry about. Ha ha.

Off to make the dinner now,

All the best.

Lili

[lilibParticipant]

Good that she has an appointment with her GP. I think sometimes anxiety kicks in when you least expect it. You can carry on pretending that you are fine, and coping, but your brain will suddenly say ‘No.’ My husband had been through about three cycles of treatment when I had my wobbly after my Covid booster. Up till that point, he had been unable to drive, barely able to walk to the car, and I was afraid to leave him unattended for more than a couple of hours. I realise now that I was in a state of constant ‘hypervigilance’, waiting for something to happen. This might explain why it is only now that your wife is feeling overwhelmed.

After I was checked out by the GP with a full MOT – bloods, ECG, BP monitoring, etc. – and nothing physically wrong, I think I relaxed more. My husband started feeling able to drive himself. I wasn’t on constant High Alert. I hope that your wife will get the same reassurance at her doctor appointment. I have never taken any medicine in my life, but if the GP suggests it, for some people I think that there are chemical ways of reducing anxiety, and I wouldn’t judge anyone who needed that extra help. It is quite a challenge to deal with such radical changes to your life when, as you say, you have been happy-go-lucky for years and years.

Stay in touch, and let us know how she gets on.

Best wishes,

Lili

[lilibParticipant]

Hi Rich,

Thanks for your reply. Events have overtaken my earlier query. In the end, my husband had his 4th Covid vaccine in January (by special request of the Consultant) just prior to starting a second type of induction treatment. He is now getting close to being ready for a Stem Cell Transplant, so we are waiting to see the Team about this in the next couple of weeks.

Meanwhile, all progressing on a fairly even keel (as far as possible when Steroids are involved!)

Best wishes,

Lili

[lilibParticipant]

Hi Peter,

I am in a similar situation to your wife. My husband was diagnosed and started treatment for Myeloma in August 2021. I can understand her anxiety. I have managed to keep a lid on mine, apart from when I had my third Covid jab. It is possible that the symptoms I had after it were down to anxiety. I don’t know of anyone expert to talk to, but I have found that talking to people on the forum, and people in the local support group has been of some help. The main way to allay fears is to get as much information about the treatments available, although some times I know that I don’t want to read too much too soon.

My other strategy for coping as a carer is to not spend my whole life thinking about Myeloma. I have gradually gone back to my social routines – nothing too risky – strictly outdoors and socially distanced. It is possible to get out and about, even when you are shielding, and stay safe. That is what we aim for.

Hope that you get some good information for your wife, and that you can both enjoy things together and apart now that the spring is here.

Lili

[lilibParticipant]

Hello Jed,

I am very sorry to hear about your husband’s diagnosis. It seems to have come about in a very similar way to my husband. When he was diagnosed last July, I was internally in a full-blown panic, but tried to keep a lid on it for his sake. He was in so much pain that he could barely walk to the car, and when I had to drop him off at the hospital for treatment, it would take him about 15 minutes to walk from the entrance to where the clinic was along yards of corridor. I wasn’t allowed to go with him. I really thought he would never be able to drive again (and he recently told me that he had thought that, too.)

Anyway, once the treatment cycles began, he was able to be a lot more mobile. Improvement started after about the third cycle, and he now drives himself to the hospital most of the time, and we go out for a shortish walk most days – we did a mile today, but that’s not always possible.

The consultants are talking about a Stem Cell Transplant for him in a few months time, and I have to say that the Nurse Specialists and the consultants have been brilliant. There were teething problems at the beginning with the treatment, but it’s a very individual condition, and some medications suit some people and not others, so there is often a bit of trial and error initially.

I hope that your husband will be given adequate pain relief for the initial stages, and that you will be able to relax a bit yourself with the demands placed on you as the carer.

All the very best,

Lili

• This reply was modified 2 years, 3 months ago by  lilib.

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