[labladyParticipant]

Hi just checking in to see how it’s going?
We’re due to start in a fortnight but completely opposite info to you no isolation whatsoever!!!
5 days in SCT centre then transfer to local hospital for checks one day, then home for 5 days the back to local hospital for 2-3wks. I’m literally crapping bricks at all the potential infection involved in al this coming and going so if you’ve got 4wks isolation whilst hard it’s something to be grateful for.
Lablady

[labladyParticipant]

Hi Maddoglady
My partner was only diagnosed this April and tbh I’ve found it a roller coaster becoming a carer as we’ve always led very separate lives and now we’re together 24/7.
You say your on 5th line so correct me if im wrong but that means your man is on his 4th relapse following initial diagnosis and first remission. I cannot imagine how hard this is for you once again getting on the roller coaster that is Myeloma.
Given the appearance of your consultants seemingly indifference to this relapse, im guessing your husband is an older patient? Although this shouldn’t make any difference to his treatment it often does. If you’re feeling frustrated by this ask for a second opinion, you’re allowed to do this, just because one says theres nothing more to be done it doesn’t necessarily mean its true. You can ask on the treatment page here what has happened with others in the same situation and if you do Facebook the myeloma UK supporters page is very helpful. https://www.facebook.com/groups/408542472584923/?ref=share
All the best (Mad) Lablady x

[labladyParticipant]

@smithster similar to my partner he is being steered strongly to SCT even though his last bloods showed his myeloma cells were so small as to be unquantifiable, we have not been offered any alternatives to SCT but have a meeting today as he finished his 4th round of DVTD yesterday. So as you say story continues……..🤞

[labladyParticipant]

Hi Nuttytyke it’s a while since I last checked in so you are not alone in your feeling of isolation.
We’ve just had an unexpected glitch in DH treatment which has delayed things for a month so we’re half way through 4th cycle with SCT date rebooked for Oct. We tend to have good days mon thro wed then really crap Thurs and Fri and fatigue sat and suns. Mood swings are horrible and im finding them hard to deal with, sometimes just have to walk away, go for a shower or go riding.
When you next go to hospital ask to see the macmillan rep they’re there for carers as well as patients. Hth

[labladyParticipant]

Hi nemoetomnis
Like you we are due to begin the SCT protocol soon. As I understand it you can visit but you will be suitably gowned, masked and gloved to do it. Have a look at the info pack for carers of myeloma it can be downloaded from the website.hth

[labladyParticipant]

I only wish I could get my DH to eat healthy, living on fish fingers, chicken soup, toast, steak and pasta, chocolate mousse and ice cream at moment. Anything healthy suggested gets a look like I’m trying to poison him lol 😆 I wouldn’t care but before myeloma we ate a very healthy varied diet but he just can’t tolerate so many foods especially veg of any description, tomatoes are a huge no no, any meat other than steak or chicken are just a few examples. He’s never been a fussy eater in his life oh and he’s gone off coffee and is drinking tea which he’s hated all his life, really strange. These chemo drugs are sure playing havoc with his appetite and digestion.

[labladyParticipant]

We have had major issues with our GP practice full stop since ny DH was diagnosed at end of March. They are supposed to supply any none cancer meds eg pain relief, anti sickness etc. When DH came out of hospital we contacted the practice and were informed curtly, don’t know anything about it phone down!! Same response a call a few days later and it took a very snotty letter to the practice head honcho to get the prescriptions sorted. I am dreading getting them organised for vaccinations,after SCT. Every interaction with them is beyond painful, they are supposed to be monitoring my DH pain relief and we haven’t spoken to the GP since he came out of hospital apart from getting a sick note which despite his diagnosis they insisted on a telephone interview but never asked about his condition, pain or circumstances. Thank the lord the hospital performs much better.

[labladyParticipant]

Hi all
Just an update, second week of round 2 of DVTD although hubby is feeling grotty and I’m still getting some backlash, things have improved. He’s much more accepting of the situation having had consultation with his specialist nurse and the super helpful booklets from Myeloma UK (he prefers printed to online he doesn’t do tech) we’re both more positive and trying to look to the future and remission at the end which will hopefully mean we can pick up our lives again.
One of the annoying things I’ve come across is that when people know about our situation they ask if I’m going to give up my horses (they take up a big part of my time along with the garden) and it’s starting to pee me off, just a reminder folks it’s my husband whose ill, lost enough of my life already do you begrudge me the very few pleasures I have left? My horses and my garden are my coping mechanism they allow me to recharge my batteries and for a while get away from the never ending hospital hours, meds juggling and mood managing role that caring is. I think people forget you as an individual and just see the ill person and everything evolves around them and whilst it’s true getting them well is most important without a mentally well carer (YOU) that won’t happen.
Take care all, big hugs, hang on in there xx

[labladyParticipant]

Hi EMF
My husband newly diagnosed too and have to say it’s been a roller coaster and like you felt our lives have been ripped apart. We on week 6 of DVTD too and hubby is really feeling grotty and it’s not easy to see him suffering but even harder when it’s me getting the backlash from it. Finding a coping mechanism is the only way for me it’s my garden. I go Potter in the greenhouse, cut the grass and do some therapeutic weed riping out lol 😆 you’ll find you’re not alone so feel free to come here have a moan, a rant, a weep or just to air feelings you can’t anywhere else. Big hug x

[labladyParticipant]

Thank you Teresa and Elaine for your replies they gave me heart that its not just me, I think both of you have similar husbands to me, mine wouldn’t look at any of the literature the hospital gave us and I mentioned the stem cell op and he said don’t want to know so I suspect that will be all on me too, it’s certainly going to be a marathon not a sprint. Take care both of you and feel free to vent here, I think we all understand and can help each other xx💕

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