Tagged: Peer
This topic contains 25 replies, has 9 voices, and was last updated by 
richfs 1 year, 4 months ago.
Good afternoon everyone.
I was wondering if someone could guide me in the right direction please.
I was diagnosed with Myeloma in November 2021 & since then my wife has suffered for the 1st time in her life with anxiety since Christmas I was wondering if Myeloma UK had anyone that my wife could talk to? This is all new to us.
Many thanks
Peter
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
Hi Lili
Thank you for your help much appreciated, this is totally alien for the pair of us I am coping with my diagnosis which I am coming up to my 6th cycle next month 🤜🤛 but all of a sudden something has triggered off this anxiety with my wife ☹️
She has an appointment with the doctor tomorrow hopefully she can get more answers then?
Like I say we are both happy go lucky people then all of a sudden our world has been turned on its head, I’ve never thought about my condition if I’m honest but I think my wife has been looking to much into it?
I hope your husband is ok? Hope you are ok as well.
Take care.
Peter
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
Hiya Lili
Thanks again much appreciated.
How weird is that my wife had the full MOT last week also & everything came back with all good results so that’s great to know as well. Hopefully the doctor can sort her out out 🙏 I think the most annoying thing is her stomach is constantly churning & feeling sick 🥺.
How are you now are you on the mend? I hope so 🙏 also hope your husband is ok as well as you say it’s a daunting time for everyone who gets the diagnosis & you don’t know what is around the corner.
I must admit I totally forgot about the forum I didn’t want to get bogged down with information that I didn’t need to know or worry about but I can see why it’s important for everyone for the information to be given by yourself & others.
Take care & positivity all the way 🤜🤛
Peter
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
Hi both! Just read your posts with interest and felt I would like to join in. My husband was diagnosed in November 2020 (a year before you, Peter). Initially, when I realised what the doctors were looking for, I had a terrible panic and felt desperate with fear. So, when he got the diagnosis I wasn’t surprised as I knew what they were going to say. Like you, Lili, I was hyper vigilant and desperate to be by my husband’s side 24/7 but I have also learnt over the months/year to try and get on with life and be as normal as possible. We seemed at one point to be thinking and talking about Myeloma and the treatments non stop, but now fifteen months in with my hubby having completed six cycles of chemo and a stem cell transplant (at the age of 68 too) Myeloma doesn’t fill our days and conversations. We go for walks, stop for coffees, see our grandchildren etc. etc. Peter, there are times when I get moments of panic still when I stop to think too much, but nothing like I did early on. Like your wife I read a lot on the subject because I needed to, even though it was scary, but maybe it’s a process you go through to get your head round it all and then slowly it settles down. I hope you and your wife get plenty of support from friends and family, as well as the GP, as it really does help. I agree with you Lili, sometimes we all need a little bit of extra support from the doctor and there’s nothing wrong if it helps get you through. Big hugs to you both, Marion xx
Hi Hendaz68
I can completely identify with your wife. When my husband was diagnosed in 2018 I read everything to do with Myeloma. My world, was completely focused on him and Myeloma. I would say for at least the first 6 months we both tried to be so positive but kept thinking of the worst scenario. Now over 4 years later we try not to let Myeloma dictate what we do. We look at all the things we can do.
When I look back,so many things went wrong but we just kept going…we are both easy going, positive folk and knew we would get there in the end.
My husband had a SCT after his initial treatment and was about 3 years in remission. He is back on treatment now and is doing really well. He says he now knows the meaning of good and bad days. I’ll not lie there are still days when I’m a bit teary but overall we are doing OK. Like maidmarion we are out and about…walks, lunches, grandkids. My husband has joined a few online music clubs as he plays guitar and I try a bit of watercolour painting. Life is good.
Everybody’s Myeloma journey is different and that also applies to the partners that support them. I hope your wife’s anxiety will settle and she will look at all the positives around you both. Family, friend and others that offer support and advice. Also the great medical support offered…lots of new developments on the way. I hope all goes well on your future treatments. There are still many happy days ahead!
Hi Henza68
Myeloma UK have recently launched a new peer to peer service for those affected by the disease, your wife can find details on the main website. A coordinator (Courtney) at the charity can arrange for your wife to have up to 6 regular phone or zoom calls with a fellow myeloma carer if she feels this may help.
As a patient I have often felt that the diagnosis is even harder on our spouses, we have no choice but to get on with the gruelling treatment, and generally experience alot of support and attention from professionals who know what they are dealing with, whereas our spouses are thrown in to the scenario without preparation, or medical knowledge and most of them do a totally amazing job of supporting us even though their own world is turned upside down as much as ours.
Hi Peter,
I’m one of the discussion forum volunteers and my dad was diagnosed with MM in Jan 2013. I can totally understand how your wife is feeling. It comes as such a shock and all you hear is the incurable cancer and it throws your world into turmoil. Like others have also said, I ‘coped’ by reading up as much as I could on MM and bombarding dad’s medical team with questions so I could understand what to expect as much as possible. It is a hard and uncertain time but it does get easier as you get used to the treatment cycles, hospital visit schedule and eventually the remission periods where life returns back to something resembling normality once again. Dad was in remission for 7 years following his SCT and lived a normal life during this period. We are now seeing him through his first relapse which does bring about some of the original worries and uncertainties, but we know how well he bounced back last time so we are staying positive. The forum is here to support you and your wife and there is always the infoline on 0800 980 3332 that you can ring. As Mulberry has mentioned, there is also the peer buddy programme which might be helpful to your wife to talk to someone who has gone through something similar. It is a tough time, especially so early on following diagnosis, but the research and treatments keep moving on so well in the MM field so many reasons to be positive. Hopefully as treatment progresses, you and your wife will be able to start getting back to some sort of normality too. My mum found that keeping her hobbies such as dancing and badminton going (though she changed the days so they didnt coincide with dad’s treatment days) helped give her some escape from the MM worries so hopefully your wife can find something similar to help give her a break from thinking about it too. It is hard but hopefully it will get easier soon! Take care and keep us updated – we are all thinking of you both x
Hi Peter, I manage the Peer Buddy service for Myeloma UK. Your wife could apply to speak to a Carer Peer Buddy if this might help her with discussing the things that are causing her anxiety? Carer Peer Buddies have experience of supporting a patient on their myeloma journey and are happy to share their experiences. If your wife would like more information about the service you could direct her to myeloma.org.uk/peer – the details and the referral form can be found there.
With best wishes,
Courtney
Peer Programme Coordinator – Myeloma UK
Hi Peter,
You’ve certainly hit on something here, and it’s great that Myeloma UK, and other support services like Macmillan, understand the specific stress and strain that is put on carers. My wife would identify with lots of what’s been said on this thread.
Additionally, we’ve found some counselling from a joint NHS / Macmillan service helpful, and a mindfulness App (headspace), which help to put things into a framework rather than the usual chaos of thought brought about by fear and uncertainty.
Whilst myeloma is always looming with its uncertain control of your lives, it’s good to focus on things that you can have control of, whether that’s choosing to spend time with friends or family, going on trips or exploring local places, spending time in nature, or undertaking projects. We recently moved house, which seemed ridiculous with everything else that was going on, but was a good way of showing that we still have a choice in how we live. The move has led to the need for lots of DIY and gardening projects, which can also feel very positive and constructive.
It’s not surprising for patients, and even more-so their carers, to find an anxiety that they didn’t ever experience before, living with the stress and uncertainty of the disease and its treatment is wearing. It does improve in time, but as with grief, can strike you both at unexpected times and in unusual ways. Talk to each other, to friends, to the lovely folk on the info line and in support groups, it’s good to be open and up-front about feelings, and important to accept that these feelings are natural and not ‘wrong’.
Some people find it good to laugh in the face of adversity, not an approach my wife would subscribe to, but I’m sure it works for some people! We do find that listening to ‘Just a Minute’ and other funny radio shows really takes us out of our situation for a while.
Waffle over! Rich 👍
Hi Peter,
I am also one of the discussion forum volunteers, we are here for the both of you if we can help in any way. We are either living with the disease or caring for someone who is, so we have seen both sides of the story. Just take one day at a time and one thing at a time.
Please tell your wife about the help Myeloma UK can offer, I am sure that she will find it helpful. Let us know how you get on.
Regards, Tony
Thank you to everyone that has commented much appreciated.
Sorry it’s been a bit of a funny couple of weeks.
I will reply to you all I promise.
My wife was given a tablet to help with her anxiety off her doctor last week which is 10mg to take each day & that has been a god send she is nearly back to her normal self & has even went back to work this week only doing a few clients as she is mobile hairdresser. She was so nervous at going out to do hair but I think she is back in the swing of things 🙏.
She has also been on the phone with a one to one which has helped her she has another call next week, do it’s all looking good for Mrs H.
I’m at chemotherapy treatment tomorrow 3 to go then I find out on Monday when my stem cell treatment will start so I will keep you all updated.
Thanks again for all your kind messages we absolutely love you all to bits.
Take care
Peter & Andrea
Xxx
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
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