One thing it’s worth asking @Byrnebaby is if there are any restrictions on visitors.
At my transplant centre I was allowed 2 named visitors. I told them who on admission to the Ward.
Sounds like family closer to hospital and hubby at home for when discharged is a good plan.
Even though my wife came in most days we always tried to do a video chat on Messenger each evening.
I know she sometimes was just by my bed and I slept through most of her visit
@2DB thats good! 
are you still not getting out much? Or have you been out and about a bit more?
@DuncanB ill ask about visiting Duncan, lovely that your wife was there for you
Yes very lucky to have my wife with me for the whole 9 weeks I was in hospital @Byrnebaby
I said to her before admission that maybe she would want to be at home for a bit but she wasn’t entertaining that idea.
Reality is she was 100% right.
@2DB im not allowed anyone in with me for collection or return of cells 
it’s all feeling a bit much today
Sorry to hear having a bit of a difficult day @Byrnebaby
Just take it easy
Oh no is there a reason for that?
@2DB they say they is no room for a companion and to protect privacy of others in there
Good morning all 
@Spangleystar @2DB @Duncan @Ceri_BloodCancerUK @Erica
Would Anyone that has had a Hickman line have any idea for clithes to take in for Stem cell transplant please?
I’ve got 10 pairs of button up pjs (reckoning on 1 pair every 2 days? Giving me 20 days?)
But what about day wear, do I need new clothes for every single day? As I just don’t have that many, and if I buy big baggy t shirts would that be ok for access to Hickman line? I’m banking on no visitors and definetly no laundry beung taken,
On another fb group, large wipes have been suggested to wash down with on days I might not want to shower? Sudocrem, and wipes for below comfort? Also take disenfectant wipes to wipe things down in the room I’ll be in?
Anything you can suggest would be most appreciated please x
I wouldn’t go buying a load of clothes that you’ll probably never use again. I’m sure you’ll find you won’t wear half the stuff you take in if you do. Ask for gowns if you need them save your clothes for your better days xx
How are you feeling my lovely @Byrnebaby ? I’ve got the jitters big time. Unhelpful thoughts popping in constantly. I’m desperate to get this done and get a long remission, my boys are still young 13 and 15 they need me (even though my 15yo would never admit it) and the thought of complications to this master plan is breaking my heart…
I’m really hoping my tai chi class later will help xx
Oh my darling @Spangleystar 
firstly, the BIGGEST of hugs are on the way to you from North Wales
You have been so very strong strong, positive and supportive through our journey together, and it is only natural at this stage that you will be feeling like this sweetheart 
Your babies are young, and will have you for many years yet, remember? You have told me sooo many times, that the progress being made will give us that, my ‘babies’ are 33 and 36, I’m 56, I lil bit older than you, and we know whatever age they are they still need us, and us them, and we will be here for them, I know you have kept away from social media, and to be honest it’s given me some bad times, but there are soooo many positive stories out there! I’m in a local support group (phone based) and the leader had 2 Stem cell transplant 25 years ago! And is leading a grew life, with the old drugs (we are on more advanced, less toxic) and you yourself have had less toxicity than me, as I’m heading for cyclophosamide over 6 hours next week, also. The patron of this support group oh my, please look up Fin Monahan, for inspiration I’ve read so many good stories in fb groups,Going forward everyone says it’s a rollercoaster and we have to expect that, bit the immediate future, you are going into a hospital that does this every single day, you will have the best care, if and not everyone does, if you get ill in there they will be on it straight away, and they absolutely will not let you go home if you aren’t right x it will be tough as you are doing it like me, on our own, but if you can get on here , we will all be here to support you if you need to scream, shout, swear absolute do it! Do it in here, do it in your house , do it in the hospital, it’s all so f’in unfair, but it will be worth it, we will smile and laugh again and genuinely mean it, your kids and mine will have us for years yet, maybe a different us than we wanted, but we will be here, getting g on with life, with this on our shoulder, but it won’t be as intense as now xx I’m not a fighter, a warrior or a f@?k cancer person, I’m like you, a mum who just wants to get through and guess what? We bladdy well will xx 
Thank you my lovely - you couldn’t possibly know how helpful your message has been 
You know how when your mindset is not great then everything plays into it? It’s called confirmation bias. Well I found out one of my favourite artists from back in the day Guru died of a heart attack related to his MM aged 48. it was 16 years ago yesterday and while I always knew it was cancer why now do I find out it was MM? and I have a cardiologist appt today as I do have a congenital heart defect (no meds or issues with it to date) - so it felt like my odds were stacked…
I’m hopeful to get some great reassurance from my lovely cardiologist which coupled with your lovely message should put me back on the right track. Thanks for re-railing me xxx
Hi @Spangleystar,
I just wanted to say the jitters and the intrusive thoughts are completely understandable at this stage - I really hope the tai chi works its magic tonight!
On your boys, in case it’s helpful I wanted to let you know that the Fruitfly Collective have a page of resources specifically for teenaged young people whose parent has cancer, with books, booklets and videos all in one place. And The Osborne Trust offer hands-on support like emotional resource packs and funded activities to give teenagers some normality during a parent’s treatment. Both worth a look.
And for you, as ever, if you want someone to sit with the worry alongside you or answer some of the clinical questions you might have about this process, our Support Services nurses are there. You can reach them on 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Thinking of you,
Ceri
Awww darling @Spangleystar yes, I get that totally! When we aren’t in quite our usual headspace we start noticing all the bad stuff and see ‘coincidences’ everywhere and pick up the negatives 
you are in a delicate space at the moment , especially with seeing your cardiologist today (hope that goes well) and waiting to go onto the next step, it’s like a long drawn out ladder we are climbing isn’t it? X it’s not easy at all x just keep doing what you’ve done, as much as you are able, as it’s pulled you through to now, I really get how you are feeling, I’m scared to death if the cyclo on Tuesday, and then the injections, look how far you’ve come, you sailed through that x
I had a Hickman Line in when I was in for my Bone Marrow Transplant last year.
Short sleeved t shirts worked fine.
As long as can access the lumens that’s all that matters.
Hospital gown will work well.
Re clothes Nurse told me I needed a change of clothes for each day at outpatient appointment.
In reality Ward didn’t worry about that too much.
Underwear is probably the thing you need plenty off.
If you end up with diarrhea they will give you incontinence pads and net pants to hold pads in place. Had these for a while during my hospital stay.
Of course as you’re using your own rather than donor cells and probably on a different chemotherapy regime this may well be something you avoid.
Hope that helps
Wobbles totally expected so don’t be too hard on yourself.
Hopefully your tai chi class helped.
Your boys are probably a lot more resilient than you imagine and it’s natural to worry as a Mum.
I lost my Dad when I was 7 to cancer(lung) and managed to push on with life.
I don’t imagine for a moment that this is something your boys are going to have to deal with at this point but doesn’t stop the worry.
Take care and hope tomorrow will be a better day for you
@DuncanB thanks Duncan, yes I think the poop game is the same for us from what I hear! It’s just the body clearing out the meds isn’t it ?! Also been told to walk as much as possible, I’m planning on sleeping through as much of it as I can and getting home ! Hope you are continuing to do well ?
@DuncanB so sorry to hear you lost your dad to lung cancer at such a young age Duncan! I lost my mum to it also, although I was 28 at the time and she was 54, that was 28!years ago last Christmas Day,
Not good to hear that poop game likely to be an issue for you too.
Sleeping and recovery important. One thing I would encourage you to get up for is the Physio visit.
I started off really well and he thought wouldn’t be a priority with me.
But things changed and we were limited as to what we could do due to catheter and low platelets.
As soon as catheter out really worked hard when he came in so I could get sign off from him when medically fit for discharge