That’s a great article you shared @Spangleystar
Very relevant to what we’re dealing with in terms of blood cancer.
My mantra has been focus on what you can influence and let go of what you can’t control
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Myeloma Information Specialist Debbie Gardiner explains what will happen and what you should do once you arrive home after high-dose therapy and stem cell transplantation.
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That’s a brilliant video @2DB and thanks so much for sharing.
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@Byrnebaby how are you doing now? Think about you often and I don’t know if not posting means you are ok, or quite the opposite.
As part of recognising my own need to process - I came across typed therapy in my area - I remember you had said you struggled so much with saying things out loud I wondered if this could help you - so I looked for North Wales and found this:
Really hope you are doing well, you’ll be off treatment for a bit soon, so hang on in there xx
@Spangleystar 
thank you so much for this star! I’ll certainly have a look at this! Thank you 
how are you getting on lovely? You must be getting near Stem cell transplant now ? I’ve been trying to keep myself away a bit and not over stress asking so many questions on here, I know it would add to any nerves you must have x and I’ve been driving hubby mad with my constant negativity and doubts, so I shall follow that link, and hopefully get the help I need x how are you getting on? I’m supposed to start cycle 4 next Friday, but my rash is back so who knows? 
you done now on cycles? X
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Thank you lovely, that’s really thoughtful. I need to get better at what I take in, the empath’s curse 
but that’s a me problem and shouldn’t stop you asking for the support you need! If I find it too much as I said before I’ll just pull back - it won’t ever be personal.
Good luck with C4 - the start of that is the countdown. You’ll be on a break sooner than you expect! Hope the rash goes quickly for you.
Yes - all finished with induction, I have my Next stage dates and process is clear now, consultation, heart, lung and kidney function tests, picking up the injections - need to start those on 10th then harvest on 14th and hospital admission 5th May.
Had a lovely chat with my new clinical nurse, she gave me her mobile for questions as they occur , so the transition of my care is going well - I was worried I may fall through the gap but as usual they are all over it. I’ve had a few worries around the treatment break - what if my light chains spike up and what if my biopsy (tomorrow) doesn’t show plasma improvement. As I’m Light Chain Only, I don’t have paraproteins so although LCMM has its own set of problems it’s one less marker for me to fret about Again my dear Copilot is giving me great reassurance, in short it can happen and it doesn’t mean you won’t get a full remission from AStem cell transplant.
I do just want it all over with now though! I don’t want to think too much about it, just get in and out the other side 
xx
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@Spangleystar thinking of you today! Hope it goes quickly for you x gosh that’s a lot of tests to go through before Stem cell transplant! If you don’t mind me asking, what meds are you on between stopping end of cycle 4 and going in for transplant? X would you mind sharing g your packing list? 
as I’ve no idea what to take pj/clothing wise, like how much of everything to take 
you have such a positive attitude and I’m sure we will both do well x
Thanks BB I am not looking forward to that weird elastic band suction feeling, I’ve been tossing and turning all night 
I hope I’m not in as much pain after, I spent 3 days in bed on cocodomal last time although that was also before radiotherapy when my lesions were really painful so maybe I’ll be fine this time.
Sounds like a lot of tests but it’s all in one appointment- apparently the kidney ones take the longest as you are tested on an hourly basis to see how your kidneys will cope with the high dose of melphalan.
After C4 they asked me to carry on with Aciclovir and Co-Trixamole so most days I’m only on 2 tablets and 4 on Mon, Weds, Fri 
I’m not even close to packing yet but I think I’ll have a lot of PJs (at least 8 pairs) and a lot of underwear 20 maybe - the nurse said some use disposable underwear, so I may do that in addition.,I’ve thought more about keeping myself occupied so I’ve chosen a couple of books, wishful thinking that I’ll be able to concentrate etc! I want to ask if I’ll be allowed a PICC cover because I’m worried I may catch it when I sleep etc. I will give you the full run down when I am closer to the start date and know a bit more.
Does C4 start today? You’ve only 3 more dex lows to get through - that’s something worth celebrating 
My tiredness peaked in c4 by the way and I’m still quite tired now so make sure you’re prioritising your rest xx
Oh @Spangleystar fingers crossed that not so painful for you today! I really hope it isn’t x I hope you are getting all these tests done at your local hospital and not having to travel to your transplant one for all of them? That’s a lot to endure! I didn’t know yet did so many tests beforehand! Certainly hope I won’t be having to get to Manchester for all of them! Yes, I’d heard lots of people take in disposables as it’s easier, also a hint I picked up and think I’ll be using is, take some hoody type jackets and not a dressing gown, as it can be quite hard to go loo with a dressing gown on or remove in time- and if you think about it , it’s right! so I’ll be packing a few of them, plus apparently it’s cold in the rooms so a hood can be comforting x are you having a picc? I think I wish I was as the Christie always uses a Hickman, and really not relishing the thought of having that placed! It’s going to be weird for both of us having to manoeuvre all that around with us! But I guess we just get it done then home and rebuild 
everything crossed that today goes well for you x cycle 4 starts Friday-seeing consultant Thursday x take care x
Thanks - this time tomorrow I’ll be wondering why I was stressing - I’m putting a 0% in my plasma out to the universe, I know it’s a lot to ask for given it was 75% but everything about this is rare so I believe it could happen!
No the tests will be at UCLH but as I said all in one day, so it’s 3 appointments- consultation which is very short - I’ll spend 5 hours travelling there and back for a 20-30 min appointment, but I have to pick up the injections. Tests, whole day and final appointment before admission is Apheresis, which again is several hours up to a whole day and starts at 8am so I’ve now found a way to get there on time on the train, driving to a different station, bit of a solo mission that one as it’s 2 days after school Easter holidays and I won’t ask my husband to take more time off (he’ll have just had 2 weeks off as a primary school teacher).
Have you had a consultation with the team at The Christie yet? Because I thought UCLH always used a Hickman and the nurse said not anymore they only use a PICC now, so it could have changed 
I have a deep routed fear of general anaesthetic, or any level of sedation/impaired consciousness (long story- maybe when we’re both out the other side, I’ll share!), so I was keen to avoid a Hickman line. I’m not sure the process of a PICC is particularly pleasant either, but at least they won’t take my consciousness away!
So 25 days to go - that’s less than a month - YOU HAVE GOT THIS 
xx
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I had PICC line in for a fair bit of time and also a Hickman Line too @Spangleystar
Neither of them were unpleasant getting fitted and I was awake while did it.
With all the lines there’s a risk of infections so they will closely monitor that.
It does make a huge difference when having transfusions.
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Thanks @DuncanB always reassuring xx
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@Spangleystar good morning star! Hope you managed to sleep comfortably and you are feeling ok this morning x
Gosh, that’s an awful lot of travelling for you to do! Totally understand not wanting hubby to take more time off, I’m trying to get mine to save as many as possible for when I’m home, I hope you will have someone with you to help once home x
It’s an awful lot isn’t it, I’ve spoke to quite a few recent patients from the Christie, one just home last week, and it seems to definitely be the Hickman don’t fancy it at all but I guess I have no option, it’s the mechanics of it all that worries me, showering etc x I don’t like being sedated either, so can understand you there x
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I guess unless you’re very close to your Transplant centre it’s going to be a fair bit of travel @Byrnebaby @Spangleystar
When we have to be down for a face to face appointment at Transplant Centre in Glasgow it’s a 500 mile 11 hour round trip
Usually end up staying down for a few days just to space out the travelling
Yes they suggested staying overnight to make the early appointment but with kids and husband at school and a dog to think about it’s more of a logistical headache than a break to do that
Yesterday was far from ideal BB the registrar failed to get the trephine sample out (twice) said it was different equipment than she was used to, meanwhile I’m in pain and she said she wouldn’t go again. Still she got the aspirate fine so there’s still a lot of data there. Trying not to be too frustrated by it, I had to pop into the chapel to calm myself afterwards.
Sorry to hear about issues getting trephine sample out @Spangleystar
Good they suggested staying overnight before early appointment.
I hear what you’re saying about organising things. Wondering if friends or family might be able to help?
Last thing that you want is travel issues on the day that impacts on your appointment.
Just a thought and no easy answers I guess
My only other option is a taxi which I will do for my admission - there aren’t really others who can help, but it’s not a problem- just logistics and I’ve got it sorted now
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Glad to hear that you have logistics sorted @Spangleystar
I know when we did taxi journeys either to Gatwick Heathrow and even Central London we used a firm that specialises in longer journeys called 581 Travel. No idea if still going but were really reliable and decent value
Yes I have a driver that I use for airport runs, but it is expensive so I’ll be fine on the train for outpatients as I can’t take up his day waiting around / and he’ll take me in for the long one!
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Good to hear @Spangleystar
That will make a huge difference.
Would encourage you to wear a face mask on public transport. Last thing you want is picking up something.
Are you having a donor transplant or using your own marrow?