Yes having to make the 140 mile trip isn’t ideal. Can understand your husband wanting to save days off for when your home. At same time the blood tests to determine optimum time for harvesting your cells are a vital part of the transplant process for you. Hopefully will understand that.
I know what the travel is like. When I was first diagnosed with Myelofibrosis wife and I making trips to the hospital for bloods and chemo injections about 12 days each month, each round trip being 100 miles. We ended up doing 18,000 miles in the car in one year.
3 to 4 weeks in hospital will be a challenge and I’m sure you will be looked after.
The Consultants and other clinical professionals need to be open about the risks and side effects. Not always the best things to hear but you do need to know.
On a positive note, there are always well established response plans when things like infections arise, in my experience.
I remember thinking that the 100 day review was going to be a major milestone. In reality just a marker on the recovery road.
Remember too that I had an Allogenic (Donor) Transplant rather than a Autologous (own cells) Transplant so anything I share is likely to be a bit different from your process.
Am I misunderstanding this? The worst that can happen in my mind is not surviving the ASCT - at no point have I been made aware of that as a risk and I’ve now had several appointments and info sessions. There’s every chance I’ve misunderstood @Byrnebaby - is that what the doc meant? Xx
I’m sorry @Spangleystar yes, he said with an infection etc, could end up in icu, especially if sepsis and the worst could happen and every procedure has risks, I’d never even thought of that, I’m aware it’s expected to get an infection, some do, some don’t and Saul through, but anything more than that had never entered my head, but I’ve read a few stories the last week, (my own worst enemy) I didn’t ask consultant, he just mentioned about infections I think they just have to give worst case scenario’s, I’m not getting g anything as much prep from hospital as you are xx and it’s weird though both on the trial I’m getting cyclo and you haven’t xx unless are risks are different! And that was another thing today, I’ve known I’m standard ris with a t11:14, ok not to comfortable , but if needed thlllltherapy tra, but hactually be high risk as you
@Spangleystar forget the end of that message ! so he said I’m high risk as I have a Q1? Or something, I can’t quite remember as I started crying, saying wrll I’d been told throughout I was standard, so he rung the genetics people, and got it confirmed he was wrong, and I’m standard t11:14, so good job he checked! But even so, it want the best hubby was mortified I got so upset, just doesn’t understand it all really, and i think that’s why I get so upset on here
@DuncanB he doesn’t seem to grasp not Duncan, attitude is ‘ we clear thos out and of it comes back we clear it again’ Great positive attitude I know, but I’ve read too much I guess, we always have it, we have to stay on meds to keep it at bay, those meds have side effects and cumulative toxicity, we are left immunocompromised, open to anything and everything, what he can work through I have to go through hospital, it’s a whole life shift, not short yerm(hopefully) long term, when I was confronted in the waiting room today eith so many blood cancer patients, it was soul destroying and a wake up call to how many are going through this, and I don’t know, just hoped he saw how it could be for us in the future, it’s not going to be easy
Oh ok, that makes more sense, we’ve been given sepsis warnings throughout. I was thinking it was less of a chain of events and more immediate response to the treatment- I’ll park that in my **** it bucket - it’s not a helpful thought. You and others stories though what a thing to put yourself through! Be kinder to yourself lovely please xx
Re cyclo - I’m in normal levels for everything blood wise - although the biopsy was an ‘inadequate sample’ it was stated that it showed no signs of residual disease, so perhaps I don’t need the extra cyclo? I think the ASCT is part of the process rather than part of the trial if that makes sense. The trial is the induction and then the randomised selection of the 4 maintenance drugs post ASCT.
Remember I’m a few weeks ahead of you, most of my info has only come in the last week or so - I’m sure you’ll get a lot more from the hospital as it gets closer. Try to keep your chin up, this will soon be over and we’ll be swapping post ASCT ways to pass the time xx
@Spangleystar oh my goodness yes! Not long and we will be recommending box sets for each other! Haha , I’ve learned my lesson now and am staying off all the sites, dont need the upset! Feel a bit stronger as finished the Len last Friday and yesterday was last bortezomib and dex day ( managed to get through it all on the 40mg!) also they confirmed yesterday my rashes are from the len so feeling more optimistic, now this part is over with, yes I never thought actually, hecwas only looking at my cycle 2 results, so by the time all cycles are through I may not need the cyclo x we are on our way xx
Morning lovely @Byrnebaby I’ve been thinking a lot about this comment as your husband’s attitude reflects my own. Working out if I’m being naive because of how I choose to see things, but after all the reflection, I just know it will be ok, there are so many treatments and so many supporting meds. Just because bad things can happen, it doesn’t mean they will.
Not that there’s ever a good time, but this all came at an exceptionally bad time for you after caring for your dad and then him passing. You’re likely still in a grief spiral with your own grief added on top with this diagnosis. Your cup was empty, not half empty and people like me encouraging you to see it as half full are missing the point. I really hope you get your counselling appointment through soon. I believe it will help you. If it doesn’t come before you go in for treatment then you’ll be able to access support in hospital (maybe even complementary therapies like reflexology and massage), please don’t brave face it in those moments - take whatever is on offer xx
Good morning my beautiful and never gave up on me @Spangleystar I’m glad you have the same outlook as my husband, I’m coming around to that way of thinking too, now the medicine load has eased and dex has gone, I’m getting lots of calmer moments, I will take advantage of everything that Is offered during that time and hopefully come out in a lot better place. Yes, last year was the worst of my life, I’m working through an awful lot, had it confirmed something ‘happened’ to me as a child,lost my 11 year old rescue boy, Bilbo, this diagnosis , then dad, none of it has been processed and I’ve shut it all away and just had pity parties over this diagnosis xx
How are you getting on lovely? How are the injections going?? Hope they aren’t hurting X did you sort your clothing for collection day?
Something I need to start sorting as I haven’t got a clue where to start for the hospital weeks xx
@2DB hi! I’m having a Hickman when I’m admitted for Stem cell transplant, how easy are they to look after while in hospital then at home? I’m a bit worried about showering etc, even if I’m up to showering x
@Spangleystar yes re:cyclo you’ve had great results , that’s probably why you aren’t having it, dodged a bullet there definitely! Maybe it will change once they have all my results back, we’ll see x
Yes there’s a lot to unpack and work through, bless your heart , I’m so pleased to hear you are having calmer moments.
The injections are totally fine. I’ve noticed minor headaches which are a good reminder to keep drinking plenty of water, and nothing else of note. The nurse said it’s usually day 4 injections when your bones are full of immature stem cells and they start spilling over into your bloodstream that you feel the bone pain, but that paracetamol does the job.
Yes I had a prehab physio session online the other day and had a quick chat about it - I’ve landed on comfy clothes, joggers, vest top and poncho (so don’t have to worry about sleeves) but will still be warm and I’m throwing a knee length dress in my bag if they need to use a femoral line (as well as a wash bag and underwear in case I need to stay in overnight). They said if they use a femoral line typically they give you a sheet to cover you, which I didn’t like the idea of sitting in my nix with just a sheet over me in an open plan ward .
Was just about to get up and go out for a walk and the rain is so loud, I think I’ll give it half an hour to pass! Have a good day lovely xx
So the longer GCSF and cyclo thing seems to be hospital specific, perhaps it’s the standard at The Christie and at UCLH 4 days GCSF and no cyclo is the standard - I asked google if 10 days GCSF would give me a better stem cell harvest results.
I know you’re big into research @Byrnebaby so have probably already looked into the difference but given you’re prone to side effects I thought I’d share in case you wanted to discuss this with your team and adjust the plan. Again remember your consent is required- you don’t just have to go along with the hospital standard if there are other standard ways that may be gentler on your body xx
Of all the lines I have had the Hickman was the easiest for showering.
The covering is waterproof but don’t soak it
I showered and avoided it as much as I could
The ends you can tuck into your bra
The waterproof dressing will be changed regularly
I think I was given spares for home.
I have had pic line
Femarol line
Hickman
Neck line
Mine have to come out as soon as chemo etc has finished
@Spangleystar thanks lovely! That’s really interesting! It’s strange how they are all doing things differently, I’m going to try and see if I can get some answers today re:supportive drugs, as I still have no contact numbers yes, It all literally turning into a trial!
Anyways how are you doing with the jabs? Last one today? Are you having to travel far tomorrow for collection? Your team are so much more efficient than mine and I’m glad you have that team, that in itself inspires confidence in the process doesn’t it? I really feel at this point I shouldn’t be chasing people around to even know what meds I should/shouldnt be taking
@Spangleystar it was also interesting to hear your backup for collection? Our veins have taken a hammering havent they? I had 9 vials taken last Wednesday, 1st vein stopped producing after 7 then the 2nd one, she just about got 2 @Heidi-J-BloodCancerUK@Ceri_BloodCancerUK , ehat can I do to avoid that happening? Would hate it to cause a oroblem on infusion/collection days
@2DB thank you for that, it all seems so much at the moment to get my head around and maintain, just another worry x what clothrs did you find best 2DB? I don’t even know where to start with what to take in x how are you getting on? Keeping well I hope?
I’m grateful it’s the last one today I can feel it now in my bones, and headaches won’t quit. Thankfully aside from a dog walk a bit of cooking and my injection (at my GP a 5 min walk away) I don’t have to do much! Yes I have to go to UCLH for 8am so will be out of the door at 5.30am hoping that there’s no issue with the trains. Also hoping that I feel ok afterwards- if not going to have to find a taxi that’s prepared to drive me at least halfway home (to my husband’s school!) if not all the way. At least with uber I can get an answer without hailing 20 black cabs to be told ‘nah dant go sarf of the river’
I’m sorry you’re lacking confidence in your team - once you get a CNS I’m sure that will improve. Do you have a date to start your cyclo/GCSF yet? Because maybe you’ll meet them then at the appointment where you have that/ pick up the injections? Xx
and every procedure has risks, I’d never even thought of that, I’m aware it’s expected to get an infection, some do, some don’t and Saul through, but anything more than that had never entered my head, but I’ve read a few stories the last week, (my own worst enemy) I didn’t ask consultant, he just mentioned about infections 
I think they just have to give worst case scenario’s, I’m not getting g anything as much prep from hospital as you are xx and it’s weird though both on the trial I’m getting cyclo and you haven’t xx unless are risks are different! And that was another thing today, I’ve known I’m standard ris with a t11:14, ok not to comfortable , but if needed thlllltherapy tra, but hactually be high risk as you
and I’m standard t11:14, so good job he checked! But even so, it want the best 
hubby was mortified I got so upset, just doesn’t understand it all really, and i think that’s why I get so upset on here
what a thing to put yourself through! Be kinder to yourself lovely please xx
so feeling more optimistic, now this part is over with, yes I never thought actually, hecwas only looking at my cycle 2 results, so by the time all cycles are through I may not need the cyclo x 
we are on our way xx
I’m glad you have the same outlook as my husband, I’m coming around to that way of thinking too, now the medicine load has eased and dex has gone, I’m getting lots of calmer moments, I will take advantage of everything that Is offered during that time and hopefully come out in a lot better place. Yes, last year was the worst of my life, I’m working through an awful lot, had it confirmed something ‘happened’ to me as a child,lost my 11 year old rescue boy, Bilbo, this diagnosis , then dad, none of it has been processed and I’ve shut it all away and just had pity parties over this diagnosis xx
, I’m so pleased to hear you are having calmer moments.
.
is so loud, I think I’ll give it half an hour to pass! Have a good day lovely xx
yes, It all literally turning into a trial! 
