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Original poster

Onwards and Upwards: Staying stale in the teacup of life

1000 replies

biscuitsandbandages · 28/07/2014 08:41

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

OP posts:
Thread gallery
5
LinesThatICouldntChange · 17/08/2014 17:41

Echoing BehindLock's words.

I guess all you can do is try to focus on the fact that the letter doesn't change anything; it's just very very hard to see something in black and white. But the reality is that you are (generally) feeling pretty well, apart from the odd days when treatment has been rough. You have a team of specialists who are going ahead with a stem cell transplant which is not something which is undertaken lightly. Whatever the stats say in black and white, this is curable. It's a horrible disease, as is the lymphoma which my brother has, but it is possible to get it into remission and for it to be got rid of. Take care of yourself and enjoy all those cuddles with your children x

Original poster
biscuitsandbandages · 17/08/2014 18:11

Yeah I know you are right Thanks

It just shakes me out of my happy denial that im fine and its just a blip. I dont feel like I have cancer (though I do look like it now without my hair) I dont feel like someone who fits the words in the letter "her only real chance of a cure is a stem cell transplant"

OP posts:
StillProcrastinating · 17/08/2014 19:57

Statistics are awful: we put so much faith in them because they are based on fact and therefore certainty at an uncertain time, but at the end of the day they still can't tell us what is going to happen in our own unique set of circumstances.

I'm not sure if knowing my statistics for recurrence helps me or not. Totally depends on the the time of day and what frame of mind I'm in.

Your response is so totally understandable.

Hang on in there and keep going. The statistics are just about probability and are not as unique as you are.

And there is still the chance of a cure. The letter says so.

PurpleAlert · 17/08/2014 20:21

Hi Biscuits- have been following your story from the beginning- not really sure what to say- not too good with wise words - just wanted to post something to say - I think of you often and am keeping everything crossed for you . Take care x

Hazelnut55 · 17/08/2014 20:49

I'm not very good with wise words Biscuits, but my heart goes out to you.

If you were told that you had an 85% chance of winning the lottery I'm sure you'd be happy to buy a ticket. You go for it girl, you're going to be a winner.

Much love.

Goldmandra · 17/08/2014 21:37

An 80/85% chance of survival may not be the odds we would choose but they could be a helluva lot worse, biscuits.

You have a really good chance of coming through this.

You are allowed to think about the worst case scenario and I would bet my bottom dollar that you're saying this on here because you wouldn't dream of saying to any of your family or friends. That's what MN is for so keep saying those things here if it helps.

Do you remember saying this?

Statistically my chances aren't great but statistics don't apply to individuals and leukaemia hasn't met me before. My personal survival statistics calculated by me and based on stubbornness, amazing support from family, friends and my mumsnet backup crew and the healing powers of 3 small children are 100% and I won't accept less.

Wise words from a strong person with a fundamentally positive attitude. That makes a difference to the percentages. Keep that fighting spirit.

There are literally hundreds of people behind you, cheering you on. You can do this.

Panicmode1 · 17/08/2014 21:53

Echoing the looking at the glass (more than) half full. I'd buy a ticket for the lottery with an 80-85% winning chance.

Cheering you on...there are lies, damn lies and statistics Wink

Stay stale (and positive).

Original poster
biscuitsandbandages · 17/08/2014 22:01

Thanks for the reminder. The 80 to 85% is the xhance the transplant consultant thinks I personally have of being alive in one year. There is then a 30 to 35% chance the leukaemia will cone back after that and kill me later......... but a 50% chance it will never come back and I will live :-)

There is no reason at all why I cant be in the 50% that is still standing in 10 years time.

Its a hell of a better prognosis than I had at tge start of this treatment precisely because of how well I have tolerated things so far. So I just have to keep going and hope.

There is a good chance I will eat cake with my daughter on her first birthday. 4months ago I never thought that could be possible.

OP posts:
Goldmandra · 17/08/2014 22:08

There is a good chance I will eat cake with my daughter on her first birthday.

Your immune system had better be in damned good shape by then if you're planning to eat cake they've all spat on blowing out the candles Grin

Keep plodding up that mountain and try not to look too far up the slope ahead. One step at a time is how you will get there xx

catsrus · 18/08/2014 08:27

And we all expect a full description of that cake so we can enjoy it with you :-) I love how virtual cake is totally calorie free AND always tastes good!

Legionofboom · 18/08/2014 12:20

Its a hell of a better prognosis than I had at tge start of this treatment precisely because of how well I have tolerated things so far. So I just have to keep going and hope

This ^^

Biscuits, at the start of this treatment if someone had told you that by Baby R's 6 month birthday you would have the statistic chance that you have now you would have ripped their hands off for it.

You are getting there strong lady, one day at a time you are getting there.

olympicsrock · 18/08/2014 17:18

Hi Biscuits, Just checking in on you as I've been working like a dog - you know how it can be. Sorry to hear you've had such a rubbish time over the last month.
Quite exciting to hear that you'll be over at the transplant centre in September - things are finally moving forward. My new job starts there in October. You'll be pleased to know that there is a WHSmiths just below the harm/onc wards with lots of mini snacks etc. Radiology there is really good. Sending a hug. Happy Half birthday baby R. Keep thinking positive.
x

Spinaroo · 18/08/2014 18:09

Oh, I loved that last update, Biscuits! X

Aethelfleda · 18/08/2014 19:49

Hang in there Biscuits, you are doing so well, every little step forward takes you nearer to remission...

saffronwblue · 18/08/2014 22:02

Biscuits the whole thing so unfair but the outlook you have laid out looks much less bleak than you first thought. Love to think you eating the birthday cake with baby R in 6 months time. xx

Original poster
biscuitsandbandages · 19/08/2014 22:40

A trip out today to the hospital my transplant is planned to be at. Its was lovely to be out and the appointments were quite positive.

I got back to a glimmer of hope... they are thinking I might be home for the weekend.

Had to cancel our holiday finally as we're due to go friday and medical team have advised against. Plus need more blood tests to monitor and maybe a biopsy towards the end of next week. So much going on!

OP posts:
magimedi · 20/08/2014 08:24

Everything crossed here for you going home for the week end.

catsrus · 20/08/2014 09:41

Positive is the word we all want to hear biscuits - glad you got to go out, even if it was just to another hospital ! Shame about the holiday - but there will be lots more to look forward to :-)

Legionofboom · 20/08/2014 12:29

Another one keeping everything crossed that you can go home for the weekend.

Better things are coming.

Panicmode1 · 20/08/2014 13:52

Really hope you can escape for the weekend. Good to see you sounding positive.

BehindLockNumberNine · 20/08/2014 14:59

Positive updates Biscuits, that is what we like to hear :)

Fingers crossed you get to escape for the weekend.

Stay stale xx

Swex · 20/08/2014 15:01

Been off line fit a few days and it's good to hear things are creeping forward. Here's to you dancing at your baby's first birthday!

Mumsfret · 21/08/2014 07:48

Such a shame about the holiday, biscuits, as it probably feels like yet another setback/disappointment, but there are positive buds emerging. I can see that glimmer of hope burgeoning into a full-blown glare as you valiantly forge ahead and leave this illness behind, in your wake.

I hope you get home for a bit before the forthcoming whir of activity starts.

Stay stale and keep ploughing on like the stalwart you are.

Original poster
biscuitsandbandages · 21/08/2014 19:21

My neutrophils are slowly climbing so they were talking about letting me home this weekend.

Today I start shivering, vomiting and being tearful. No fever but my normal early infection symptoms so im back on the antibiotics.

Will I ever go home?
Someone tell me im going to be ok.
All I can think about is surviving this and the transplant and then relapsing and dying anyway.

OP posts:
magimedi · 21/08/2014 19:52

You are going to be OK .

The antibiotics will fight your infection.

You will get home.

You will survive this & you are not going to die.

You are one of the strongest women I have ever had the luck to 'meet'.

This is just one of those shite hiccups that happen.

Stay stale & never forget that you have hundreds of us strangers rooting for you.

When (& I mean when & not if) you are better we will have to have a wonderful biscuit MN meet up - start thinking about it. I can't wait to meet you properly.

A very,very, huge hug to you - I know I am but a 'stranger on a page' but I think of you during my day so very often.

(((XXX)))

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