[sunflowersParticipant]

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.

[sunflowersParticipant]

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.

[sunflowersParticipant]

Hi Jane

Thank you for your invaluable feedback and insight, it’s much appreciated. I completely understood the approach for the NHS to proceed with Leukemia patients in the first instance, I’ve been inspired by the amazing courage and progress of these young patients, their results have been heartwarming and I can only imagine the concerns of the families whilst waiting for a donor match and the hope that Car-T may be offering.

Thank you for the insight re the supply issues, that may explain the progress of roll out.

It was yourself that provided insight to BiTEs…so I’ve been extensively reading around those developments too (thank you).

Unfortunately my partners consultant openly admitted she has “reached the limits of her knowledge around Myeloma” as she is a haem specialist not myeloma, so this month we are back at City hospital Nottingham to speak with the stem cell team, so I really need to feel prepared to ask about any routes of further treatment I don’t want him to keep being blocked out or slip through the net for possibilities.

If I hear or find out anything further that may help the community I shall puck up this thread once more…thanks once again and all the best for your journey.

[sunflowersParticipant]

Thank-you so much for all of your kind words, I think this is the first week that our worlds have slowed down from the spin cycle and a little bit of a routine has started to form.

My partner (Stephen) has aced chemo 1 and Wednesday this week his consultant pulled us in for an update, I got to ask (based on discussions here thank-you) why my partner is not on the newer 4 drug chemo treatment, but we were advised that due to his stroke, Thalidamide would have an adverse effect for him, so VCD was the best option.

Now he is waiting for the blood results taken on Wednesday, but we did get some good news that the 4 days he was on just dexamethasone before his chemo commenced, light chains have reduced significantly, paraproteins have not changed, so we are both eager (as im sure everyone gets) to understand what impact the recent chemo will have had on his progress.

Chemo has now been rolled back to 1 day a week too, so im hoping that will be less impacting for him as his leg continues to be swollen. But the biggest thing, much like you have all voiced, is that a surreal sense of calm is washing over us both at the moment, as we feel lucky…to have the diagnosis and now be on the right journey.

I know I will reach out to those who have shared their stem cell journey given time, as it looks like a route that is being chosen for Stephen, your insight, help, conversations on this and other chats have already been invaluable with us being to ask some good directed questions of the medical consultants, this has been invaluable to us being able to understand more about the journey we’ve been on and the one we are on now.

I shall continue to give updates, but more importantly….we are not scared of this, we are going to and already are talking openly to our friends and family about Myeloma, putting us in the driving seat and back in control 🙂

Stephen & Sheena

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