Awww bless you
I have my second and last transplant and I want to protect it at all costs hence I’m shielding
I want to echo the loss of ourselves at a diagnosis
We do have to give ourselves time to mourn
We discussed this in therapy
I said goodbye to myself pre myeloma and welcomed in the new me living with myeloma and this version is pretty ok I think. I can live with me 
Oh @2DB, I like the new you too!!! What a great mindset, it’s really amazing how we can come to reframe these health crises with a bit of time and care for ourselves. So reassuring to hear that you feel your “current version” is pretty okay—it’s almost like the weirdest kind of app updates with these adaptations to ourselves!
Oooo I like that
Updating my app
Thanks for all these great links @Ceri_BloodCancerUK, I am so impressed (and a little proud) that there’s a Maggie’s in North Wales! Next time I visit family over by there I’ll pop in, their centres look and sound so welcoming. Nothing like that where I am now sadly, it’s such an amazing resource. I wonder if they offer lifts to and fro, might it be worth asking them @Byrnebaby? I see there’s a few bus routes (13, 45, 46, T51) that pass by at least, probably how I’ll get there 
Good strategy @2DB
We formed a bubble with my wife’s best friend who’s a nurse and never gets together with her if slightest sign of illness.
That’s tough @2DB
Mind you my Transplant Consultant said sometimes people never get immunity back.
I didn’t realise that this was the case with Myeloma
Halfway between Inverness and Wick so yes pretty far up north @Byrnebaby
Having said that beautiful place to live so happy to travel when need to.
My post transplant is shared care between Inverness and Glasgow hospitals.
It’s 100 mile round trip to Inverness.
Was down there today for a venesection.
Fortunately can share the driving now which makes a difference 
@DuncanB @2DB i didn’t know that either! That’s another huge worry to add to the list then - is it worth doing the Stem cell transplant and taking the risk, jeez, meltdown down 
yes we have a maggies, I don’t live on a bus route, quite cut off where I live, so only have hubby to depend on for lifts, he’s had to cut hours and change things aroung to get me for my treatment once a eeek and bloods once a week, it’s a mess for sure
@Spangleystar thanks for your words, it’s just hard x hope you are doing ok, nearly the end of cycle 4 for you x
@Ceri_BloodCancerUK i just find it incredibly t difficult to talk face-to-face, I immediately break down, there’s too much to cover, and then I start putting on a brave face, for strangers, for my kids, I just can’t open up , that’s not fair to them, we’ve coped with too much as a family, for them to give up by losing ‘me’
Trained support counsellors see people break down all the time lovely, please don’t look for barriers to prevent you from doing the things you need to. I know it’s hard, truly, we are walking the same path but I learned to accept help and to be open to the process, that in itself is difficult but the essential start of the journey.
Xx
Unfortunately our partners need to make adjustments too in order to support us through treatment @Byrnebaby
It’s really tough for them too.
My own perspective is that a Stem Cell Transplant if a possibility is a real chance for the future so whilst there are risks there’s a lot of potential benefits.
Maggies may well be able to offer support remotely so worth contacting them.
I hear what you’re saying @Byrnebaby and as @Spangleystar and others have said Counsellors are use to dealing with breakdowns of emotions.
They are trained to do it.
No need to put on a brave face for anyone. If you are not feeling good in yourself it’s okay to put yourself first.
Kids and others are a lot more resilient than we think.
I lost my Dad at 7 to cancer and it didn’t impact on me long term.
Hope that helps
Great advice @Spangleystar and words of support.
Sometimes you just have to trust the process as you say
Hello @Byrnebaby I really feel for you. I have shared this poem by Pooky Knightsmith before on this forum but I shall share it again here. It really helped me several years ago when I heard it read out in a church service. In particular the words, “Let them help you, let them try, and never be afraid to cry.” It was the catalyst for me asking for help and realising it’s ok not to be ok.
UPS AND DOWNS by Pooky Knightsmith
Life
Can feel
Hard to bear
And most unfair -
An uphill struggle
And nightmarish muddle
You’re fighting on your own.
But stop and look and you will see
That though you’re fully grown
All around are helping hands
Who’ll guide and care and
Understand, as you find
Your way down. Let
Them help you
Let them try
And never
Be afraid
To cry. Xx
Hello @Byrnebaby
Welcome to our forum, and thank you for taking time to share how you are feeling.
I’m sure it was difficult to type everything up, and then wonder what reply you would receive. Let me assure you that you are not alone, this is a wonderful community of people who have their own experiences of blood cancer, either a patients or family or friends of those who do.
If I may be so bold, I feel I can relate to your circumstance to some degree, in as much as I was, and remain, a carer for my wife, who over the years has gone through brain surgery, cancer (now recovered) and is now on the waiting list for two new knees and potentially hip replacements. So being a member of the C club and trying to avoid social interactions that could result in my catching an infection is my new day to day, so whilst I cannot feel what you are feeling (your feelings are your own and we are all individuals who handle things in our own way) I feel I can understand why you feel the way you do.
You mention feeling stupid by trying talking therapy, and I did too! I went along for six sessions with a lovely lady that I was able to book via my employers employee assistance programme. I made a friend! and I found it really helped me. One one occasion we just talked about whatever we had done that week or what we were planning to do the coming few days. Simply talking, no rush, no pressure. So, whilst I am not in a position to give advice, I would encourage you to speak with your medical experts and take things at your own pace.
You may find the section Blood cancer: mind and emotions | Blood Cancer UK a good place for support.
Always remember if you prefer you can speak confidentially with our support services team for information and support on 0808 2080 888
Take good care of yourself
Kind regards
Mike
I spent a lot of time crying at counselling they really are used to it.
Even if you cry the first time you go it’s ok.
You have a lot to get out and talk about
It takes time and it’s not sorted in one session
Tell your consultant that you are not coping and you need to be referred to a clinical psychologist
You are allowed to ask for help
Actually the first step to recovery is making that brave first step.
Transplant for me was to enable a deeper response and hopefully a longer remission
It’s hard but doable a few months pain for long term gain.
I’m glad I did both now because after my first one I was never going it again
My kids family and friends were my strength to get through both and I was determined to get bd k to them
Kids definitely are resilient
My two have been fab taking me to appointments
Holding sick buckets
Calling consultants/gp
Making dinner
It gave them control over the myeloma too.
I also made sure they lived their lives as well.
Kids know when something is wrong it’s like a sixth sense
I have cried with both mine and cried with them when they found it a bit much
Now they tease me when I say I don’t feel well and we laugh about it
In the early day 2017 I would talk to anyone that would listen
The power of family love is the greatest
Pre covid
I had my first transplant in 2017 I returned to work with adjustments to be safe in 2018
I went out to certain places for coffee and asked for a takeaway cup and not to touch the rim. I have to say they got used to me and couldn’t have been kinder. I explained why and used to get stories of how there was illness in the servers family
I did catch cold a few times which took longer to get rid of but GP gave antibiotics etc.