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Life-limiting illness

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Original poster

Not a good day. leukaemia diagnosis.

975 replies

biscuitsandbandages · 14/04/2014 03:44

When I woke up this morning I was a mum of 3 with an 8 week old baby.

Now im a cancer patient on thr coronary care ward.

This cannot be happening to me.

OP posts:
saffronwblue · 26/04/2014 12:29

Holding your hand and sending you loving and positive thoughts. It is OK and completely normal that you have down times - you don't have to be a superhero.

Swex · 26/04/2014 13:22

Hope you are less bored this afternoon. I too would plan my dream holiday for when it's all finished. Then you can book it when you get your all clear.

Original poster
biscuitsandbandages · 26/04/2014 13:35

Holiday planning is a lovely idea but a little too painful.

I still have to make the decision to cancel the log cabin I booked for us to spend august bank holiday in. It seems so far away but the balance is due in may and the odds of us making it seems so miniscule. Its only the uk but it was a big deal for us.

OP posts:
Elibean · 26/04/2014 14:23

About that way with words, Biscuits. Forgive me if you're already a published author, but how about doing some writing while you're banged up and bored....?

Ignore if its not your bag, just you do seem rather good at it Smile

Just popped in to say hello and am thinking of you. The others are right - if they thought you weren't going to come out the other side, they would definitely tell you. Its the done thing, these days, I'm told.

xx

Original poster
biscuitsandbandages · 26/04/2014 14:32

Lol, im not sure anyone wants to hear my ramblings but thank you. Im just grateful im not boring you lot yet. Its such a safe place to come and rant when im not quite at a point I can let fanily and friends share my pain. It hurts to see them hurt and flail around trying to find the right thing to say when they simply cant and I dont expect them to. Sometimes I need to protect them a bit from that and sometimes I feel its thr right time to show them im struggling. Here I dont have to control what I say....

OP posts:
imip · 26/04/2014 15:33

Biscuits, can you crochet or knit? If not, keen to learn?

Just wondering if a good idea to pass the time and focus your attention to a knitting/crochet project. Perhaps a blanket for each dc? This would be a beautiful gift up for dcs, an heirloom from such a significant time for you. Come what may, an amazing thing for your dcs to treasure from you.

I sometimes lurk on the arts and crafts thread (wistfully, I have very little skill). I knitted for dc3 when in hosp during the pregnancy when it was looking touch and go. It was for her, but she never wore it. But was a very good focus for me, rather than counting the minutes of what could go wrong...

yegodsandlittlefishes · 26/04/2014 15:46

I agree with Elibean, you are a good writer, biscuits.

deserttrek · 26/04/2014 15:49

Biscuits.

Well, tell them.

Tell them how it is for you. Insist on complete silence when you talk. Then talk from the heart.

Then, just listen to what comes back to you.

I had written a few (many) words to you today, but they seemed so inadequate, after reading your and other posts. So I have left them aside, for now. Because, you are stronger than you know. Your own words these last few days confirm that.

You are a beautiful Mum.

You will get through this Leukaemia. I have, and if I can, you will.

Lovethesea · 26/04/2014 21:00

Another lurker coming on to say I'm praying for a full and speedy recovery. Am on the register too so also hoping I can be a match for you x

Spinaroo · 26/04/2014 21:52

Evening, Biscuits! How has today been?

storytopper · 26/04/2014 21:59

Thinking of you, biscuits. Hope you managed to keep yourself occupied today. Great post from desert as always. Her words carry so much weight. Hope you sleep well.

Only1scoop · 26/04/2014 22:01

Thinking of you Biscuits....
Hugs Thanks

Fontella · 26/04/2014 23:19

And another lurker popping in just to say I'm right here with you Biscuits. x

Panicmode1 · 27/04/2014 05:44

Hope today is a better day for you Biscuits. Weekends in hospitals are always really hard (in my experience, limited though it may be). Stay thinking about playing in the garden sunshine with your DCs and DH.....

Original poster
biscuitsandbandages · 27/04/2014 07:28

Thank you everyone.

Yes, people who have asked if they y can send something I have askef for wool not chocolate and have a growing collection of granny squares since xhildhood with my mum taught me to make them on autopilot. I was thinking of looking into more complicated patterns to learn (if I can remind myself how to crotchet by pattern not instinct) but right now that seems a challenge too far so squares are my drip day entertainment. When im tagged to the bed and cant roam I add to my pilr and hope im the one who gets to sew them all together. Not normally an activity I would relish!

I have a migraine aura this morning and its scaeing me. It feels just like every other migraibe and I only get them pregnant and breastfeeding. Its not even a major one, just visual changes like I had a few weeks ago at home.
Ive taken paracetamol as i wont have time if that r headache develops but am worried now I might nask a fever if I am unwell or damage my liver.

Its the first since I knee I wasnt right. Im scared it represents something else and I feel vulnerable. But its just a migraine. I know really it is.

OP posts:
Montegomongoose · 27/04/2014 08:11

Hold on tight.

What do the doctors say about the migraine?

Thinking of you.

affafantoosh · 27/04/2014 08:34

It's just a migraine :)

I can heartily recommend Attic24 for crochet tutorials and patterns - nothing too complex but lots of things to try.

Thinking of you, biscuits x

ajandjjmum · 27/04/2014 09:37

Sorry you're feeling rotten with this migraine - can the hospital give you anything to get rid of it?

I love reading and have always thought that it would be fantastic to have a few weeks just to doss around and read. When I was in hospital for six weeks, I couldn't concentrate on any book, so I do feel for you.

Hope today picks up - another day nearer getting home. Smile

RoseHoney · 27/04/2014 10:29

Thinking of you, Biscuits!
I hope your migraine goes soon. Xx

Spinaroo · 27/04/2014 10:42

Morning Biscuits.

Sorry to hear you have a migraine- if you only get them when pregnant and breast feeding, this could be your hormones re-settling again. Did you take your own paracetamol? If so , please let the doctor know.

Is anyone able to come and see you today? Are there points of the day you can look forward to? x

Swex · 27/04/2014 10:45

Hi biscuits. Sorry if my dream holiday idea was painful! And I truly hope your migraine goes away quickly. X

SweepTheHalls · 27/04/2014 11:44

Just popping by to say I check in on you everyday and look forward to your ramblings Smile

BehindLockNumberNine · 27/04/2014 11:54

Just a migraine.
A result of stress and being stuck in a warm room without any fresh air.

I love hearing your ramblings, ramble away...

As for crocheting - well done! I don't have the patience for even a basic granny square. Lovely idea to create a blanket, which you can look back on in years to come and remember it as the time you kicked cancer in the butt!!

Stay stale xx

Elibean · 27/04/2014 12:08

I get those aura-only migraines these days (since birth of dd no. 2, in fact) instead of full on ouchy ones.

The are always disturbing and I totally get why they would be anxiety provoking at a time like this - all 'normal' symptoms become scary when one has a new and unknown physical state to grapple with. I really hope it passes soon, preferably without the ouchy stage. xxx

As for ramblings, they are clearly quality ramblings as so many of us have commented on your ability to express yourself Smile

I can't crochet in spite of granny having taught me, so am most impressed.

blondepip · 27/04/2014 12:34

I've not managed to read all responses, but hope I can help a little. Im just recovering from an allograft - BMT with my brothers cells. I had Hodgkin's lymphoma - meant to be easy to cure, not so for me but I got there!!

So firstly I've survived a BMT after a lot of chemo!

Do not even consider that any outcome would be anything but positive, yes fine to feel worried but decide that you are going to win, This got me through.

I had 14 weeks in isolation on the haematology wards, I decorated my room, covered the walls in pics from my kids (3&6). Had my iPad - played words with friends against my friends. If wifi a problem I bought a mifi, but the 4g iPad worked fab.

I brought in bedding, had a mattress protector stopped me sweating from the rubber mattress, also had my own pillows and duvet (which had my kids duvet cover as only singles we had).

Ask for sedation for bone marrow biopsies. I too had needle phobias by the end of treatment I'd had two central lines fitted with just a local anaesthetic, I've got over my needle phobia.

Delighted they are letting you see your kids, I wasn't allowed so managed with FaceTime.

In the long run I actually ended up spending more time with my kids as was home a lot when otherwise I'd have been working.

One of the ladies I know from hospital has been cured from ALL with Philadelphia chromosome - with a transplant she's in her 50's.

Any questions please shout! A lot of coping was just getting my head in the right place and pushing on, I also learned to live day to day, I wasn't going anywhere in the next day and I knew that's all I had to worry about. I'm thinking of you Thanks