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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:
biscuitsandbandages · 21/04/2014 09:11

My biggest boy is ok. He just misses his mummy. I guess they will adjust soon and forget about me. They need to get on with their lives. It woukd be easier for them if I just died quickly.

OP posts:
Brakeover · 21/04/2014 09:22

Hi biscuits
It's tough in hospital during a Bank Holiday weekend, from tomorrow all the consultants will be in work and more available. Hold on to the fact that the consultant is looking for cure / remission. Hold on to that and fight for it. The separation from your children is temporary and you will see them soon. Try to rest, eat as well as possible, take it easy. Watch tv , keep it light. Your body is struggling at the moment, it needs mental and physical rest. More information and definitive plans will emerge over the next few days try to relax and think about the emotional things later on x

Spinaroo · 21/04/2014 09:26

Biscuits, no one has suggested you are going anywhere! Are your children able to visit you? How often are you seeing them at the moment?

SheilaFeely · 21/04/2014 09:31

Oh biscuits, it must be impossible not to fear the worst but there are people, medically qualified people, telling you it is ok to hope for the best. Please don't write yourself off now.

How is your milk today? Hopefully things are lessening now. Things will hopefully seem brighter when you have a RL someone to talk too.

Take care (((hugs)))

deserttrek · 21/04/2014 09:40

Good morning Biscuits, not a good start.

I was one of the few, like you, with T Cell Acute Lymphoblastic Leukaemia, diagnosed three years ago. I went for months misdiagnosed, to the wire, but I was caught in time, and like you was whisked away from my family then and there and placed in an isolation room to get the same treatment that you are having. Make no mistake it is scary and you will go into some deep moments. But you will bounce back.

But remember this, just one small rogue cell, of which millions fit onto a single pin head is behaving very badly. You are bigger than this cell. Your husband and children are bigger than this. You have a great medical team behind you determined to eradicate the ALL and turn you back to full health. You are literally standing on the shoulders of giants.

I will follow this thread and keep in touch.

Back to the garden, got to wield a pick axe against a stubborn wall. And to think three year's ago I did not have the strength to climb half way up our stairs. Like you, I have three small children, so know its tough but do your best to keep smiling. Keep positive, best medicine.

Big hugs.

TravellingToad · 21/04/2014 09:58

fantastic post from deserttrek

Biscuits my heart is crying for you, I cannot imagine how you must be feeling but you CAN fight this. I hope you get honest answers from your doctors, it sounds like they believe that you can get through this though, you should take heart from that. They wouldn't give you that hope if it wasn't true.

MrsDeVere · 21/04/2014 10:08

This reply has been deleted

Message withdrawn at poster's request.

gordonpym · 21/04/2014 10:13

Biscuit, it is normal to feel scared and hopeless. But you must not give up now.
My best friend's DD was diagnosed with Leukaemia (can't remember the type sorry) when she was 3. The prognosis was terrible, less than 10 % as she had a double mutation, more than once, doctors told my friend she wouldn't pass the week, the day or the night. One doctor even told my friend "I don't understand, she should be dead now" Shock.
Today 8 years later, she's a healthy girl, gorgeous, who drives her mother crazy most of the time.
They couldn't find a donor, so she ended up having a self-transplant which worked just fine.
Yes you are facing one of the worst moment of your life. It will be tough and difficult, but you must be strong for you and your kids. Take it one day at a time.

Of course, you have the right to complain and even to share your feelings that it would be so easier to throw the towel and not even try. And you are at the right place here. We are all here to stay with you, talk to you and hold your virtual hand. Right now, you've just been hit by a truck, it will take days to absorb the news, You've just opened the door to a world you knew existed but never really thought about.
My DM has breast cancer right now and I can understand (if only second hand) the roller-coaster of emotions you are feeling. Whenever you feel low, we will be here to help you as much as we can.

Try to occupy your mind (so easy to say, I know). Once you have sorted the wifi connection, why not enrol in a light MOOC (massive open online course)? I particularly like Coursera www.coursera.org/ and Open2study www.open2study.com/. Moocs are free and cover tons of subject . Or listen to some TED talks www.ted.com/.

Or mumsnet like you've never done before. The AIBU and the Mumsnet classics are a good way to spend the time when you are awake at 3am.

A big hug ((()))

riskit4abiskit · 21/04/2014 10:14

Hi, any chance you can Skype to see and hear your kids? Im another one that thinks they wouldn't say a cure was possible unless there was a good chance.

Can you buy a subscription to Netflix or whatever and watch some series you have never seen (assuming you have got wifi now at hospital?)

Hope today finds you feeling well all day.

riskit4abiskit · 21/04/2014 10:15

Ted talks are great!

BellaVita · 21/04/2014 10:16

Am so sorry you are going through this. Send love and strength xxx

BellaVita · 21/04/2014 10:18

When my DH was in hospital over Christmas 2012 and into 2013, we did a lot of FaceTime. He even managed to watch the boys open their presents on Christmas morning. Can you set something up?

janey68 · 21/04/2014 10:43

There are a whole 'secret army' of women and men out there who have been through this or similar ( desert's post upthread is awesome)
Hold onto that fact. You must feel so alone, but you aren't... Others have been there, others sadly will be where you are in the future.. And there are many positive stories as related on this thread.

Some excellent practical advice here too. Hopefully once the bank holiday weekend is past it will feel a bit different. Weekends are the worst time in hospital, I know, so holidays must feel even worse. Night times are hard too. Use that knowledge to pace your self through your days and make sure you rest and sometimes just stop thinking which is the most exhausting bit. Easier said than done I know, but have you tried relaxation tapes, or just calming music and visualising. I also find in moments of stress that the deep breathing I did for childbirth really helps- just focus on each breath in and out very slowly and deliberately.

Glad your eldest is feeling better and hope you get to hug all your children very soon

deserttrek · 21/04/2014 10:59

Biscuits, I hope you are able to connect to the web. If you are having difficulty I can organise some equipment to get to you. But would need to contact you via the PM thingy, however that works. It is much better if you can keep occupied, watch some films, learn something by studying online.

You will get through this.

biscuitsandbandages · 21/04/2014 11:31

Desertrek.... thank you thank you thank you for posting. Thank you so much. I am in floods of gratitude for finding someone like me and someone who has bought some time back. It is so rare I dodnt think I would find another of us.

Thank you thank you and I am so pleased for you xxxxxxxxx

OP posts:
Coconutty · 21/04/2014 11:45

This reply has been deleted

Message withdrawn at poster's request.

ajandjjmum · 21/04/2014 11:57

desert - you're a star.

So glad that you've found someone who can support you from a position of knowledge biscuits.

And we're all here when you want to vent or need a bit of company! Smile

Dumplings4ever · 21/04/2014 11:57

Biscuits - if good wishes and kindness counted you'd be walking out of there right now.

Love to you x

deserttrek · 21/04/2014 12:03

Biscuit, your day started so badly. GREAT to see you bouncing back.

ALL is very survivable. Remember there is a huge team underpinning you in the hospital, and underpinning that is a huge haematology team nationally. They are amazing and want you to make a full recovery. They really do know what they are doing.

Not many people get ALL, but a lot has been learned from it and the whole of that knowledge and experience is being directed to your treatment and recovery now.

You are part of that team, not apart from it, but within it. Your role is to be strong and kick that nasty little rogue cell into touch!

I am signing off now, just for a few hours, but will be thinking of you.

Misfitless · 21/04/2014 13:04

Fantastic news, Desert!

Heartwarming to hear of your recovery.

Whilst there will still be moments of despair, it sounds like you have some concrete hope and good news to hold onto, which I hope makes the fight and journey feel slightly less terrifying some of the time.
xxx

biscuitsandbandages · 21/04/2014 16:52

One of the nurses has found me a landline phone for my room and both of the boys have tested out calling me. They are chuffed they can just cal me without having to ask permission. :-)

OP posts:
imip · 21/04/2014 17:14

Brill news! Can this landline also be used for more devious Internet connection uses? Smile

Of course, after dcs are in bed!

imip · 21/04/2014 17:15

Oh, that's outing me at being pretty rubbish at all things Internet-related!

RockPaperScissorsLizardSpock · 21/04/2014 18:09

Ah that's great that they have a phone line direct to you Smile x

RockPaperScissorsLizardSpock · 21/04/2014 18:10

And big hug Desert Smile