@Byrnebaby I didn’t get any to take home, they start them on day 6 I think xx
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Won’t you be seeing anyone until you have had your immunisations @Spangleystar ? I’ll be having all except the covid one I think, I reacted badly to the first Astra Zeneca one I had
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Ahhh @Spangleystar I misunderstood 
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Don’t think there’s a timeline for recovery and when you are able to do certain things @Byrnebaby
It’s as much about your own confidence as it is anything else.
Your immunity will still be compromised at 6 weeks.
I’m 14 months from my donor transplant and my immunity still not at the level they would like.
So it’s a case of having a mask on in shops and waiting until last hour of opening to go out for a coffee. Also tend to avoid small places.
Best just to be ready to go with the flow and not overly planning.
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I will but only in the garden a few feet apart and only if everyone is well xx
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@Byrnebaby I had Pfizer Biontech - 6 maybe 7 doses (heart related) , never had a reaction- maybe see if you can get a different one rather than ruling it out altogether xx
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Takes me back to last year.
A week or two after discharge my wife’s brother and family from USA were in the village on holiday.
They clearly couldn’t stay with us or even come into the house.
They all did COVID tests and I was sitting just outside the garage and everyone else was seated at the other end of the driveway so they could at least see us.
Was a good compromise
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@Byrnebaby @Spangleystar how are you both
Hope everyone in the thread is doing ok
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Hi @2DB not been in a few days, was at Christie yesterday for pre-admission bloods, pick up wash and nasal gel etc, and see consultant, wants me out as soon as possible as it costs nhs 3k a day 
mentally I’m a bit low and I think I’ve had my head in the sand on how serious a diagnosis MM is, and got caught up a bit in hubbys ’ clear it out, if it comes back we clear it again’ and I asked consultant prognosis and he said the aim of treatment is to possibly get 15 years, in total, so it’s shook me a bit, and been reading a lot of bad stuff 
I’m my own worst enemy really and need to wake up, I’ve been reassuring everyone else for months that I will be ok,-and fell for my own rubbish
Hope you are keeping ok @Spangleystar 
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I’m doing well lovely @2DB my last set of bloods are almost all in normal range and other than the standard fatigue. I’ve nothing to complain about. How are you doing? Xx
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Curious about the nasal gel! @Byrnebaby
I intend to get 30 years regardless of what any Doctor may tell me about data for other patients, they are not me.
If I don’t it’s probably because I’ve been hit by a bus or something hopefully a bit more rock and roll than MM 
I’m sorry to hear the current vibe, please ask to see psych when you go in. I saw this brilliant one who helped me get perspective on a dark day.
No-one can tell you it’s not serious, of course it is and this isn’t for downplaying at all. That doesn’t mean you have to let it define you though my darling, you need to get to a place of acceptance and make your peace with it and hopefully some counselling in hospital could help you there xx
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@Byrnebaby signing the consent form was the worst day for me too. I still don’t even remember the drive home (very concerning given I was driving and on my own!)
Wishing you a brighter day tomorrow- it took me a couple to get my head back in the game xx
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Oh @Byrnebaby, I’m sorry to read you’re feeling a bit low. I think I might do too if I’d just heard those statistics from a consultant. Seriously, do they not train in how to show empathy for their patients in situations like these?! Please don’t feel bad about your care costing whatever it might cost, the NHS is for anyone who needs it, and I have to point out that the taxes you’ve paid are definitely involved in funding the NHS, including that consultant’s salary. I’d also question being given a prognosis in terms of years at this early stage, as in being told a random number now seems a little pre-emptive.
I like your attitude @Spangleystar of living according to your intentions versus some dread-inducing rounded-up number that some doctor has told you. It’s so hard to let ourselves trust the process and that our bodies can cope with so much more than we imagine, especially when our minds try sabotaging our progress!
This low day will pass @Byrnebaby, even if it doesn’t feel like it now. You can remind yourself of previous days that have followed rubbish ones. We can also just let ourselves feel rubbish as, to be fair, there’s a lot to actually be feeling cruddy about isn’t there? Then later or tomorrow or soon you’ll hopefully feel a little less like that.
Thinking of you @Byrnebaby, and please remember the lovely support here with @2DB and others holding you in mind.
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This is the first time I have heard a consultant be concerned about the cost of treatment !
I have been protecting the cost of my treatment by shielding and had no recognition for it. All the consultants I have dealt with don’t seem bothered at the cost and how I keep myself out of hospital and well. I would guess I have had at least a million pounds worth of treatment.
The main reason I believe we are encouraged to be released is that we fair better at home once our neutrophils are at 1.0 and if your well enough.
You will not get chucked out of hospital unless there is a reason
Most stays are around 14 days
No one knows how long we have even consultants they can guess from studies etc but we are all different
I was given 6 months if I didn’t respond to treatment and here I am 9 years later
Don’t get hung up on prognosis
I was told my second transplant would be half life of my first and both have been 4 years.
We are unique
The best thing you can do for yourself is stop reading bad things, focus on you and getting well enough to get back to living life
You got this
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That’s brilliant news
Fatigue is par for the myeloma journey
I’m doing good making the most of treatment freedom but looking forward to starting the next treatment and getting into remission again
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What is the next treatment for you lovely @2DB? I hope it is kind, whatever it is. In hospital I was chatting to a lady who had just had CarT for Lymphoma she said it was a walk in the park in comparison to stem cell transplant xx
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My consultant even told me there was no benefit in using my private healthcare, because the nurses in OncHematology were so experienced in supporting Stem cell transplant and in the private section they were general, because they could be treating anything. So definitely not concerned about cost.
@Byrnebaby you have been in a spiral of read bad news about other people, ask the consultant to tell you it’s not true for you, but they can’t give you that lovely - all they can give you is general data points. Remember me, you and @2DB were all young to get this. The majority of data points gathered will be from people a minimum of 10-15 years older than us. Then there is the myriad of differences within myeloma itself. This is why I never compare - other people’s stories are exactly that.
Consultants are pushed for time and in my experience mostly see the CNS do the soft skills piece. I’m not excusing the lack of empathy, but I have also experienced it. My main UCLH consultant was a dream, but a couple of others along the way I have been given short shrift by. Maybe try your CNS for questions? They will likely be a lot closer to patients to give you their view.
I really hope you are feeling better today lovely. Monday marks the start of your next chapter and Tuesday reborn, this can get you healthy for a long time. Sending you big love and lots of hugs xxxxxxx
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Hello, just popping in to say ath I’ve sent you a Direct Message, @2DB.
I also wanted to reiterate to everyone @here that our Support Line, staffed by our brilliant blood cancer nurses, is here for anyone who might need it, whether that’s to talk through the medical side, get practical advice or just discuss how you’re feeling.
You can call for free on 0808 2080 888 (option 1) or email support@bloodcancer.org.uk.
We (the Blood Cancer UK Support Service Team) think this thread is wonderful, and don’t want to interrupt if we can help it 
But we are always here if you need us.
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Your Consultant talking about cost @Byrnebaby is very unusual and part of me wonders if it was a tongue in cheek comment that came out the wrong way.
That said any doctor would tell you that they know that the best place for recovery is at home in your own environment.
As soon as you are medically fit they will be looking to discharge you.
And believe me you will be ready for that moment when they say you can go home.
I remember being told possibly discharged on Monday then it was Wednesday and then Friday. Saturday morning I got the news I was going home.
With regards to prognosis as @Spangleystar and @2DB have said there’s so many factors at play.
If there’s one thing my diagnosis has taught me is the importance of living in the present.
Take care 
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Love your positivity @2DB
You will know better than most the difference it makes when starting or restarting treatment.
Take care
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