Onwards and Upwards: Staying stale in the teacup of life

[biscuitsandbandages]

This is my 3rd thread as I go from a shock diagnosis of leukaemia towards what will hopefully be a cure.

Life is shit but I am strong and there will be happy times again.

Thank you everyone for your ongoing suppport x

So sorry to hear about your friend's new diagnosis biscuits :(

But yay for getting to Legoland and making lovely memories for your DC (unless you didn't tell the DC, snuck out and were going round the dragon rollercoaster on your own going wheeeeee..... You weren't, were you? )

Lol no, they would never forgive me! :-) had a great day saying yes to them. Can we have an ice cream please, sure what flavour would you like, really?

Very cool

I'm still here too, Biscuits. Glad you had a lovely time with the rest of the tin. Did you get to eat an ice cream too?

How is your little boy, Brave?

Oh the sheer joy of a yes day :o I very occasionally randomly just decide I'm having one and say yes to whatever my DD is asking for (usually an ice cream or small toy etc) instead of the no not today grind. It's fun Isn't it?

I'm so sorry about your friend my lovely x

Hello Biscuits,
So pleased that you had a great day at Legoland. I have a lovely image of chilled out Biscuits eating ice-cream and going on all the rides smiling away at the sheer naughtiness of it and being with Mr B and the crumbs. You are right, one of the few blessings of a life event like this is that you don't sweat the small things. When our shower leaked a few weeks ago and the emergency plumber made 6 holes in my bedroom wall I said "oh well no one died".... Sorry to hear about your friend. Life is shit sometimes isn't it. Arsebiscuits ! (means buggery bollocks)

Brave Little Soldier - hope it all went well for you little boy on Monday, sending you both my love.

To make you laugh, my small son said the other day "Mummy, girls don't don't have willies do they? That's a shame!

Legoland sounds like great fun! We're now day +1 and the little man isn't great but still smiling.

Just a tip which may help or not help. The chemical to preserve the cells smells vile. As a disclaimer, I am sensitive to smells but I've had to keep tissues with drops of either peppermint or rosemary very close by to cope. It tends to linger for a day or two so it's hard to avoid. Otherwise , it was emotional but more low key than I thought. Now we wait...

Hope the next few days are filled with lovely things!

Biscuits, I'm going to apologise and ask if I can hijack your thread. I really hope you don't mind.

MNers, yesterday I started a thread in the Campaigns section of Talk asking for help from MNHQ in my search to find a bone marrow donor. If any if you could see your way to supporting me, I'd be so grateful.

I'm back in hospital with a relapse (it's a blip - yes I'm fed up but it's just a long blip). It's more stuff going on (neurosurgery today!) but I'll need the transplant soon. All my appeal website details are on the thread. Please support.

Sorry again biscuits but I hoped you'd be ok with this. I really hope you're enjoying home life. I'm sure the new chilled out biscuits will stay if you like her best!

Brave - thinking of you and your DS. Prayers and good wishes.

Hijack away dashing, no apologies needed.

dashing I went to find your thread to link the details and was shocked when I saw the website I had not made the link with you but shared it on facebook a few days ago and since then its appeared in most of my friends feeds too.

I hope you find the perfect match for you asap. Ps. Your children are gorgeous!

www.perfecttenmatch.co.uk

I still pop in on you biscuits. Sounds like a lovely weekend. Thinking about you both Brave & Dashing . I am on the register already.

Hope you're enjoying your week biscuits - and Dashing, really hope you find that match soon.

Thanks so much biscuits. We'll beat it yet!

Of course we will ! :-)

Mixed day today as had my radiotherapy planning appointments. Lying almost naked on a couch for an hour while people draw on you, measure you, take photos then put what feels like sandbags all around you is quite surreal.

The good news is my bone marrow is still clear and the remission is holding.

The bad news is there is an issue with the donor. They are putting my transplant back a week to make sure they dont start killing my own bone marrow before they have the donor cells "in the bag" so to speak. Metaphorically and literally. Im trying not to freak out but with no other information except 'donor personal issues' its impossible not to fear the worst. ..... that the donor will change their mind or be unable to donate after all.

Please don't worry Biscuits. It may be something as simple as an important work meeting that they can't miss. Or their child's birthday? There are lots of personal reasons that could delay it by a week.

Well done for being brave today. It's all progress towards a total cure.

xx

Keep the faith biscuits. It's so hard but those blips do come and you can't help worrying. It could be as simple as them having no car for a few days and being unable to get their GCSF injections.

It will happen angel. Concentrate on the simple pleasures of life while you can. I found that so helpful. A really good piece of toast and tea in a china mug were great for me. Being able to deliver 'Mummy's special rub' every time somebody bumped themselves.

But remember, it will be ok.

Thank you

The donor is still agreeing to go in on the planned day (1st oct) but instead of giving me chemo first and using the cells fresh the donor registry have recommended I dont start chemo until the cells are collected and then frozen 'just in case' I wish they could tell us more but its all anonymous so they dont give any information.

Good news is that I asked and whether its this donor or whether we have to find another one, I am allowed to write anonymously and say thank you. It felt wrong being given such a great gift from a stranger and not being able to say thank you so im really pleased. I will write before we know if it has worked or not to say thank you for being given a chance. If it works I can write again but that way if it doesnt they will never need to know and I can still say thank you for trying.

Aw biscuits that's lovely. I'm. Sure the gesture will be appreciated. I'm sorry about the delay but dashing has advised you well, enjoy some simple pleasures before it all kicks off. I have everything crossed for you and am hoping things go to plan.

Good luck brave and dashing.

I agree - you really want to say thank you! They are your own personal superhero in cape and tights!

well that is all very much in the positive zone biscuits might not be 100% but the odds are looking better and better. The donor will donate and they will make sure that what they have donated is right for you

Apparently worst case scenario there are some cord bloods that match already frozen so at least there is a back up plan although there would still be a delay. Asking Allah for a little favour and trusting He will get me where im meant to be by the best possible route.

I feel like my life is mirroring yours, Biscuits, though from the other side as a donor. I have just had my final (I hope!) dates through, and this is the 4th set. Things have been tweaked all the way along. But the info I've had this time seems more certain. Of course you're going to have all sorts of scenarios going through your head but the likelihood is there's some very simple explanation as to why they've put you back a week. I suppose the fact that its an anonymous donor makes it all feel a bit more tenuous... I am donating for my db so have been able to talk quite openly. Having said that, I'm not exactly sure when my db will have the transplant... He doesn't say much about any of the treatment so it's quite possible he won't have the chemo to kill off the bone marrow until my cells are 'in the bag'. I honestly don't know. Fact is, you know that the donor is still going into hospital on the planned date, which all sounds positive, and you are doing really well.

I'm keeping you in my prayers Biscuits and little Margot Martini who also has leukemia ( she has both AML and ALL). I think you will get your transplant.

Sorry you have this delay biscuits, it must be very frustrating, especially when you aren't able to know what is going on. Great news that you are still in remission and it sounds promising that the transplant will go ahead fine, it later than planned.

Have a lovely weekend with your family.

Hi Biscuits, it all still sounds positive. I am going on holiday tomorrow for a week after passing my ARCP today! yay! I would love to come and see you when I get back if you are an inpatient and feel up to a chat. PM me when you are in the transplant centre. I'll be around most Fridays. Keep your chin up ....