Sending hugs 
@Byrnebaby xx
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@2DB yes I did, I made sure I had them in, and took a moment 
I couldn’t go to our usual cafe as other than going shopping at 7am, masked, cleaned trolley handles, I’m not leaving the house until 10th June-consultant, Admitted, 15th June 
Hickman am, Melphalan pm, 16th June Cell Return
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Much appreciated lil 
@Spangleystar im just beginnig to realise what you went through in lead up to Stem cell transplant head is all over the place 
but ok , how are you doing my lovely? X
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Awww I’m pleased you continue the hot chocolate and scones.
These little reminders can be done anywhere even at home.
Yes keep yourself well
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Don’t you worry about me my darling @Byrnebaby I’m fine 
your focus needs to be on keeping yourself anchored and afloat right now, these are choppy seas. Don’t put pressure on yourself to address or answer the thoughts if it’s not helpful for you.
Instead I’ll tell you a good news story because I hope it will give you faith in the power of positivity.
My lovely hospital family, a few days before I was discharged I saw the lovely Dad and Son in the garden. They filled me in on the latest which was that the lovely Mum had a perforated bowel and had been given days to live. When my friend the daughter (who is literal golden energy) popped in to see me later we had a conversation about whether she should tell her boys that this could be the last time they may see their Nanna. We talked about who that would benefit and what if it didn’t turn out to be the last time, all the anguish and despair that could project onto the lovely mum (who wasn’t aware) etc. Anyway I heard last night that lovely mum’s bowel perforations had healed, her condition had stabilised and she was now about to start her chemo. It’s nothing short of a miracle. Miracles do happen, positivity is everything xx
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@Spangleystar that is such a good news story ! Thank you for sharing x That must have been a very heavy and emotional conversation to have and just when you where going through your own journey, how wonderful you met each other just at the right time to help each other through, you literally are an 
x
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I’ve just been ugly crying for the last 2 hours 
I broke, I watched a live stream of the 1st night of the Take That tour The Circus 
My son Dan bought us tickets last year, to cheer me up when I lost Bilbo, and our night was 20th June, Yes, I’ll be in Manchester, but. A very different venue I cried because of all the beautiful memories of gigs I have with him and Adam, I cried because the memories of this gig have been stolen by my blood, and I cried because I dint know if I’ll ever be able to go into that environment ever again, and then- my hubby told me to ‘get a f-in grip, as you’re acting like your dyin’ and your not’ 
I know I’m not, but I am mourning the care free me of 7 months ago, who would just run into a stadium and sing her heart out, now I think ’ hmmm 40000 people ’ 
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Aw @Byrnebaby, I know how you feel. No wonder you had a good cry with all these reminders around you of what might be to come and what might change. Our silly illnesses really do seem like they steal stuff away from us, and for me that feels like such a big loss. Like I’m grieving for who I was before my diagnosis, over and over again.
Funnily enough, but not funny haha, it was gigs that I felt saddest about losing to my illness. Being in those spaces around others who are really into the same thing can feel like finding your own community. But I know that you know I go to gigs again and I hope that can be motivation that you might too. Personally, I find stadium concerts too overstimulating and panic-inducing so I’m glad my favourite musicians tend not to be popular and play small venues 
Your husband might like to know that with illnesses such as these it does feel like we are going through cycles of grief, which you must sadly be an expert of after the year you’ve had, if I may be so bold.
Hard to get a grip when our psyches are trying to mend, I’d say. It’s totally understandable to grieve for as long as needed, there’s no timetable to it, and it’s certainly not a case of simply passing through those 5 stages and the grief is neatly over with. Let it ebb and flow, these horrible sad times will pass.
Oh, just thought but could your son and his partner take turns to livestream on their phones from the concert to you?! That would be very cool, a friend and I did that from separate Radiohead gigs! Thinking of you @Byrnebaby.
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I’m entering the Christie 15th June
AM: Hickman
PM: Melphalan
16th June
Cell Return
I know anything can happen, and I can be in shorter than 3/4 weeks and also can be in longer, I’m the person who is ‘if it can go wrong, it will go wrong’ 
unfortunately.
I’m hoping it will be 3 weeks, and packing for that,
What I’m wondering is: on your experience, does the D last that long? Is it wise to pack Paper disposable and normal underwear, so I can just throw it daily? (As not having visitors, unless I go beyond 3 weeks)
Socks? Throw as I go?
As I’m not sure if I’m in isolation from bugs, if they would want bags of smelly laundry hanging around
My mind is blown 
Can I even wear a bra with a Hickman? Am I hooked up 24/7 or just when I need meds?
Is it true they weigh our wee? Is that throughout the stay?
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@Duncan thank you lovely, yes, I guess it is a grief cycle and I will learn to ride the wave, I just want to get to a stage where, hopefully, this just becomes the devil on my shoulder 
and in my life, rather than being my life? At the moment I just can’t see that, and as you say maybe the days of stadiums are over (that’s a really really hard loss for me) D&A where really only going for me, and have fortunately been able to sell the tickets, as they were basically at the front, they didn’t want to go without me, as I was ‘fun mum’
I just want to be me without this heaviness 
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Morning @Byrnebaby
I’m sorry to hear that you have had a difficult time emotionally. It can’t be easy
I’ve been fortunate to have my wife at every appointment since diagnosis apart from one so she hears first hand the reality of diagnosis.
Maybe hubby deep down really worried but doesn’t know how best to express is. Just a thought.
I’m sure that missing the Gig is disappointing.
Way I would look at it personally is what would I prefer.
Take That Gig that gives you a buzz for a few days
Take That Alternative Gig that could give you healthy life for a long time.
When I was first diagnosed we had all sorts planned for our respective 60th birthdays.
Everything had to be cancelled. Disappointing yes but health had to come first.
Right now getting to and through your Transplant is the priority for now
Take care 
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Hey lovely @Byrnebaby I’m sorry you’re feeling this way. I’ll answer from my experience on D&V and come back to the bigger topic after.
D started 2 days after melphalan I used disposables for around 5 days/nights. They were there as protection but I never once actually went into them or got caught short as the bathroom was 5 steps away. That said when you’re not doing any washing it’s easier to continue using them. They will offer you loperamide for the D if it gets more than 3 times a day. Personally I hate the stuff but even I took it once because everything was getting sore. There will likely be a volunteer shopping service if you do need to get more. Xx
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@Byrnebaby I didn’t bother with bras - just vests the whole time I was in. I doubt you’ll be hooked up all the time. I had a couple of days when I had infection where I was on for about 16 hours with antibiotics, antiemetics, fluids and various vitamins - other than that the line is mostly in place for the melph, transplant, platelets etc and ease of blood extraction xx
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Hi @Byrnebaby
Rest assured staff will make sure that you have everything you need in terms of underwear.
Yes they did weigh wee when I was in to make sure to measure fluid intake and check for other things. Of course different for me as I had a donor Transplant.
Remember you don’t need to figure everything out. The Transplant is a bit of an unknown for you but something the team looking after you will have gone through thousands of times.
Trust the process and be guided by your clinical team. Every person has a different journey.
Be motivated to keep your hospital stay as short as possible and accept it’s about taking things hour by hour
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Heartbreaking @Byrnebaby. You will get back to you. Your husband needs to appreciate when the time for tough love is, can you gently tell him, it’s not right now.
I’m impressed even a year ago you’d go somewhere with 40k people! I wouldn’t- as much as I love live music, I hate crowds with a deep passion, have a little unresolved trauma since 7/7 to be honest and I wasn’t even in the thick of it.
Any live gigs I go to have to be totally open air - big parks or festivals- I never get stuck in the throng and always know the quickest way out
Anyway I’m sure they’ll tour again, nice little earner isn’t it I know it’s sad and of course you’re disappointed but this isn’t IT. This isn’t time to grieve because you’ve not lost yet. There’s every chance you’ll be singing your heart out to Take That live again. You’ll be you and I’ll be me, promise xx
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Such a great description @Byrnebaby, of riding the waves and letting it be part of life, rather than life itself. Perhaps it’s felt like constant grief for you, and I would not be surprised after what you’ve been experiencing. What’s that saying… it’s hard to see the wood for the trees. Sometimes it’s only after we find a clearing that we can look back at all the dense forest we’ve had to clamber through.
I’m sorry you missed the concert but don’t give up hope of attending future ones. Like @Spangleystar, I prefer outdoor venues and thinking back many of my favourite concerts have essentially been day festivals—that aforementioned Radiohead concert was in a beautiful park in London. I even saw The Cure at an outdoor amphitheatre around the time of my diagnosis in a kind of stupor, but I was there in body at least… Lots of fresh air blowing about, and easier to stay safer in those sorts of venues as you can move about more.
Just wanted to say how sorry I am about that 7/7 trauma @Spangleystar, I can empathise. It was terrifying wasn’t it, and actually I always do a quick reccy for exits whenever I enter a venue, especially now I am around people carrying guns 
Glad you are here to reflect on it, horrible as those memories are.
I’d also agree with @DuncanB that our loved ones can show their care and worry in different ways to us, and I’d say we (men?) can tend to hold onto difficult stuff, sometimes until it has to burst out. Not to say that there’s any right or wrong way to talk about this stuff, it is after all a very doomy topic. But yes, like Duncan says, health has to come first. Mental health too, so I’d say let’s keep letting our loved ones know what we need.
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PS @Byrnebaby my wee was never weighed! I had to give a couple of urine and stool samples while I was in xx
I also didn’t bother with socks, strictly winter only for me , had towelling slippers for walking around as they don’t like you walking around in just socks as slip hazard xx
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@Duncan That’s the weird thing about it. It was only after the event I found it terrifying. I had a dentist appointment in Farringdon that day and worked 11-7 at the stock exchange on regulatory news. It was after 9am and so I couldn’t believe the queues and pushing and shoving of people trying to get on a bus. All the phone lines were jammed as I was trying to let my dentist know I’d be late. Eventually got on a bus, just before Russell Square there was a loud bang and we were all told to get off so I walked through the backstreets to the dentist. The streets were so empty and I kept hearing sirens but carried on. At this point there was no coverage, speculation was broken down train by media outlets. After the dentist I then walked to work and when I got in people couldn’t believe I’d made it. Everyone was ashen ‘Thank goodness you’re ok’ etc then I heard what had happened. I then worked until 7am the next morning as the night team couldn’t get in and we weren’t letting terrorism win.
The trauma came when I realised I had ignored so many warning signs, how easily I could have been on the bus that did blow up and when I’d heard one of my friend’s flatmates was on the tube at Kings X and never came out that day. The pushing and shoving was the recurrent nightmare for a while and I’d wake up struggling to breathe in cold sweats. It’s mad that it’s nearly 21 years ago and the whole thing still replays like it was yesterday.
Xx
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Oh my poor @Spangleystar what a truly traumatic experience! You describe that so perfectly, that I actually see you like cilian Murphy walking through London in 28 days later! I’m not making light of it, it’s just your description and the clarity you have relayed it I hope those dreams have lessened over the years, and I’m so thankful you are here xx
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@Spangleystar i want to go to your hospital!! TC weigh both throughout your stay !? Now I’m apprehensive 
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