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We thought it was time to offer an update, especially to those who are just starting out on their own Myeloma journey, we know how much a diagnosis can throw your world into a spin, cause anxiety and worry, so hopefully sharing will give hope and inspiration.
We are partners, Steve and Sheena. Steve was diagnosed with Myeloma after suffering with an ischemic stroke 14th july 2022 (age 50) that left his right side completely out of use, We appreciate many people have different routes to diagnosis.
Having struggled with nose bleeds from 20s, through to dvts in his 40’s unfortunately Myeloma was never picked up by doctors or even considered, 4 weeks before his stroke Steve was dismissed by doctors 5x after various scans and much pain in his left leg….the clock was ticking but nobody realised.
He had a Rhumotologist approach him in hospital after his stroke, and boy was she persistent…her persistance led to diagnosis of the stroke cause and with light chains reading over 17,600 which is the only way they could measure Steves Myeloma chemo began the next day after Myeloma diagnosis Aug 5th 2022. This Rhumotologist knew of Myeloma because she had a close friend recently diagnosed, this was a blessing for us.
The hospital were great with chemo, light chains rapidly dropped and Steve finally left hospital 20th aug…and “high alert” commenced at home, along with my need to work from home 100% and shut the world out for fear of virus and infections, however the 4th month Steve was advised he would not be offered SCT…our world’s shattered once more, we both cried all the way home from the hospital….chemo continued into Feb 2023, when the chance of SCT was put back on the table, consultants now deemed Steve “strong enough” from his stroke to be considered…light chains were hovering now around 100 and everything picked up pace with injections to increase stem cells in April to gather them for his transplant in May 2023…Steve has said this was exhausting.
He went into hospital on the 10th of May and intense chemo began, he lost his hair, was in full isolation and felt possibly at his worst. I won’t go into full details as it is a tough journey, but feel free to message if you would like to know more. I physically crashed and burnt in the May too everything we had been through together, the emotional support of your partner you neglect yourself, feeling helpless whilst your partner is in isolation, made me stop and it was like an emotional tidal wave hitting me also. I cried, a lot and finally needed to take a week off work.
3 and a half weeks later Steve was allowed home, “high alert” starts all over again. Everything is anti bacced, knowing that your partners immune system is 0 and will need at least 6 months to be in a safer place, I was petrified that the children may pass on germs from school and we tried to juggle everyone’s needs. Exhaustion for Steve was a whole new level, so patience is key, emotionally everything hit Steve too, and he was strong enough to ask for counselling, so we reached out to macmillan, they were supportive and it certainly helped his emotional recovery to talk things through with a complete stranger who could remain neutral (his words)
Steve had 3 chest Infections, 1 bout of shingles in his first 6 months, his hair rapidly grew back in and he had a childhood injection pathway under way.
I can honestly say Steve is in an amazing place 1 year on, tiredness still remains a real challenge and limited right side strength due to his stroke, but had someone told us a year ago he would be where he is today, we would have struggled to see it. Light chains have and remain sitting at 37 on his 8 week consultant checks, no additional chemo required for now and no additional meds….so life allows us to move forward together and we feel blessed.
Myeloma is both physically and emotionally challenging. We hope that by sharing our journey we give hope to those who may also not see what the future can look like.
They do say give 1 year to myeloma, I think that rings true for us now, we wish you all strength on your own journeys.
I’m so grateful for you posting this. My husband is in hospital for a sct at the min. He had his chemo yesterday with stem cells to be reintroduced today. I know everyone’s journey is different but this all really helps knowing what is happening to us and how we are feeling is similar to yourselves and the hope of light at the end of the tunnel is good to hold onto
Thanks for sharing your experience
You’re most welcome, im so glad it may help you.
I’m so pleased to hear your husband is having SCT, it’s hard but so very worth the opportunity.
I appreciate this is a hard time for you both right now, be kind to yourself and if you would like to chat or have any questions you feel we may be able to help with please reach out.
Sending you much love and energy.
Thankyou again. Not sure how to contact however would u mind sharing the actual stem cell transplant details and how that progressed. My husband is starting to feel ‘heavy limbs’and bad nausea and wondered if you have any advice to help him through. We know it’s likely going to get a lot worse before it gets better but another perspective helps greatly. Thankyou
Hi Ang
I can advise the first week for Steve he recalls the heavy sensation and exhaustion on a whole new level, to the point of just wanting to sleep, not interact with anyone, no communication with myself, no visitors and recalls only the doctors and nurses waking him frequently even during the night to undertake regular checks and take frequent blood samples…I recall him grumbling in weeks 2 and 3 about the constant blood samples at 6 am through to the last checks after midnight. They checked Steve every 4hrs, frustrating at the time, but Steve says looking back it was the right thing to be done, but when you are so exhausted it is the last thing you need.
Steve mentions bathroom stops in the first week were so exhausting that they literally wipe you out for the day.
Nausea, Steve says he doesn’t recall having this, but appreciates that every journey can be slightly different.
About a week after stem cell introduction is around the hair loss point, Steve says this was head, chest and beard..and lower regions, and he noticed it thin on his arms and legs. By month 4 his hair was really starting to grow back in.
He recalls getting mouth sores even though he had ice pops for his induction of stem cells (great advice from this group page), and he really lost his appetite, which Steve says is unusual for him (he’s not wrong there)
He does say his mind was all over the place too, there was a feeling of “loss of control” over himself, this is where for him the consultants cover the medical but the emotional can be tough, so encouragement to keep going, stay strong and a listening ear can help when your partner has the energy to chat. That applies to you too, PLEASE use this time for you to recover a little too, re charge your batteries with something you love doing but may not have been able to do in a while, it will help you immensely when you’re back together.
Towards the end of week 2 Steve was more accepting of me visiting, conversation was limited and I tried to take a Starbucks or a favourite treat in which was greeted with enthusiasm, but then left untouched. Steve also recalls having a very upset tummy week 2, but again this may differ from person to person.
Best advice…dig deep (both of you) count the days down to coming home knowing that it all does get easier with time.
Thankyou for response. My husband is unfortunately feeling really nauseous from the night he had chemo. He’s not too tired yet but head all over the place and can’t focus on anything for long. They hope to get ontop of nausea by fitting a syringe driver today with anti sickness meds to try and stop the constant nausea , he’s also fed up with the nurses coming in and out and definitely the loss of control over things is an issue. Just wants to be out of that room and at home where he’s free to walk about and not locked in a tiny room
I really appreciate you sharing your experiences and I’m trying to be positive for both of us as he’s not feeling to upbeat right now 😂
Take care and I hope ur husband keeps well.
Hi Briggsfamily1974gmail-com
Hope you don’t mind me replying. I had my SCT end of November 2022 and now in remission and on maintenance.
Like lots of people say on this forum, Myeloma is very a different experience for each patient.
During my time in hospital I too suffered from nausea and didnt eat for most of the 3 weeks I was there apart from 2 small idividual tubs of vanilla ice cream . The dietician came to see me and bought a bag of snack items,but just took one look at me and said she would come back in a week’s time to see me as even the thought of food made me feel ill.
I didn’t have any visitors at all during my 3 week stay, as I felt I wouldn’t be much company to anyone. My husband and I agreed to face time each other instead.
I had shaved my head a few months before I went in as I knew the chemo would be lethal and I had started to lose some of it already, but the pillows in hospital were still covered in dark hair every morning,but thankfully all the bedding was changed every day.
I also had very little energy and the fatigue was horrendous and I just wanted to sleep for the first 8-10 days. My observations were also completed every 4 hours which is very annoying especially during the night. My room was near the nurses station too, which didn’t help as could be quite noisy at night.
My picc line got infected and had to be removed, which didn’t help when they wanted blood tests all the time as my veins aren’t very good and my arms were both virtually black when I left hospital.
I then seemed to slowly start to feel a bit better and managed to get up and showered and dressed.
I eventually left hospital on day 20 (20th Dec) and was just glad to be home if not at all feeling very festive.
My Xmas Dinner was a small plain jacket potato without any butter or topping which my husband cooked alongside cooking himself a Xmas dinner with all the trimmings.
It took me about a month to get my full appetite/energy back and after 3 months I was referred back to my local hospital and consultant and started my maintenance treatment.
The only issue I have from all the treatment I have received since diagnosis is quite bad neuropathy in my hands and feet.
My legs are numb from the knees down and I have lost feeling in both my feet which causes quite alot of problems.
Would I go through another SCT? – if you’d asked me that question a few weeks after the last one,the answer would be a definite NO.
But now even with the neuropathy issues the answer would be YES.
You will get through it!!!! BOTH OF YOU.
Thankyou so much for sharing that. My husband is day 5 now and although the syringe driver is helping a little with nausea he’s still unable to eat much and is now having some diarrhoea which I know is another common side effect. He has been told there are keytones and protein in his urine. They don’t seem too worried but have sent off sample for analysis which is reassuring that they are on the ball but worrying also as he’s drinking a lot and has had fluid drip so I’m concerned about his kidneys now 😩
They think his numbers will be at there lowest around Tuesday or Wednesday of next week , he too is near the nurses station which isn’t helping his mood as they are out joking and having a great time (his words) while he’s trapped in his tiny room.
I’m hoping he will start to feel a little better soon , again Thankyou all of the information helps so much.
Thankyou for your response it’s so helpful to hear other experiences
My husband is still a little nauseous but syringe driver helping a little . They have said there’s keytones and proteins in his urine could indicate infection? It’s all a big learning curve which is why your kindness in taking time to share your journey is invaluable
Hope you are well.
Yes, thanks for all the contributions. Super helpful. Apheresis here this week with probably SCT in three weeks’ time. Although I’m dreading it, it also feels as if the worst us almost behind us and we will be on the road of recovery (I haven’t even started considering what the long term implications of this diagnosis are tbh…it has been enough of a roller coaster since Oct to take that aboard too!).
Good luck to everybody…including partners and other family/friends!
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