Active discussions

Please or to access all these features

Talk
Life-limiting illness

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

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:
fidelineish · 17/04/2014 09:19

Crossing everything for you biscuits

MrsPixieMoo · 17/04/2014 14:36

Also thinking of you biscuits. Hope that today's treatment was ok and that you have as restful an Easter as possible. You're not alone. We are all here for you.

Mignonette · 17/04/2014 14:49

Hello Biscuits

I would very much like to help in any way I can. Our family has been there too. My SIl was diagnosed with Cancer when her baby daughter was only three weeks old. Lymphoma. She had to stop BF too and had all the upheaval that you are experiencing now.

SIL has been clear now for eight years. Flowers

SayCoolNowSayWhip · 17/04/2014 15:02

A late hand holder here. I am in Hampshire if that's any help. I really do mean it. Thinking of you and sending you strength and hugs.

yegodsandlittlefishes · 17/04/2014 18:21

Hope you are coping ok, biscuits. Flowers

A warm hug for you and Brew

BishB · 17/04/2014 20:22

Thinking of you biscuits. I start chemo next week and am dreading it - the great unknown. But I know once treatment starts you begin to feel more in control.

Rachie1986 · 18/04/2014 05:54

Still thinking of your biscuits.

Also of you BishB

Original poster
biscuitsandbandages · 18/04/2014 07:05

Thank you everyone. Im not dead yet. First chemo went in 36 hours ago and I still feel totaly normal.

The most frustrating thing is I literally have no symptoms at all. I feel utterly well. But am locked in this room probably until I die. I miss my children. They have visited but two little boys need to run around and they get so bored here I can only really aee them for a few minutes.

This is not my life.
Most people with this particular leukaemia are dead within the year. There are only 60 odd adukta diagnosed with it each year. I must be special.

Feeling very bitter and angry and so so sad for my family.

OP posts:
Original poster
biscuitsandbandages · 18/04/2014 07:10

My arms are empty and aching. My chest is full of milk for a baby who can now only have formula. I am putting off expressing as its just the saddest saddest job but I really must this morning or its too uncomfortable.

OP posts:
minmooch · 18/04/2014 07:20

Morning Biscuits. Treatment has started and that is a positive step. I remember crying buckets when watching my son's first lot of chemo go in. It's a frightening time for you and your family. Don't try to be strong and brave - this is a huge shock and you will probably accept it in little tiny pieces at a time.

I am so sorry that you are having to stop breast feeding. There is one thing to be stopping out of choice but that is not your choice, so very hard. I know there are drugs that can be taken to stop milk production but not sure if they are compatible with your chemo - may be worth asking.

Statistics are very hard to read, try and steer clear of them.

I hope that treatment is gentle on you and that you are home earlier than the Drs are saying. Xxxx

YouDoVooDoo · 18/04/2014 07:21

Biscuits Sad (((extremely gentle hugs)))

I completely understand your bitterness and anger. This is monumentally unfair on you and your family. I'm not going to say 'stay strong' or any such platitudes, if you want to scream and shout, cry and sob, throw stuff about (preferably not at well meaning medical staff) or in fact, stick the tv on and try to pretend it is all not happening then any of those is fine. Anything goes.

I agree hospital with children is the pits. You are so excited to see them and then within minutes they are climbing on stuff, touching things they shouldn't, sitting on bits of you that hurt (canulars etc) - very, very difficult indeed. I kept a stash of bribes (sweets) for when they arrived and could you deploy something like the dreaded iPad/nexus/hudl once you have had lots of hugs so at least they are 'with' you, even if they are busy candy crushing or whatever.

Do express that milk, the discomfort must be awful, can the hospital lend you one of those electric pump things to get it done quickly?

I'm very, very sorry to hear the prognosis is so bleak Sad

(((More gentle hugs))

saffronwblue · 18/04/2014 07:29

More gentle hugs from here, Biscuits. This is just bloody unfair. Awful to have to stop b'feeding - that enough is a cause of grief apart from the illness itself.
Well done on getting through the first chunk of chemo.xx

Only1scoop · 18/04/2014 07:32

Gentle hugs....thinking of you all x

yegodsandlittlefishes · 18/04/2014 07:32

Yes, you need to express the milk, sorry. It must be so hard to do that. I guess the milk cannot be saved to feed your baby, because of the chemo, which must feel like such a waste.

Really feeling the injustice of your situation, reading your posts. It is so unfair.

Hand hold. I am listening.

I used to know (online) someone who I think had your type of cancer and survived. I knew him around the time of his remission, and it was great as he had been through so much and had beaten it. I don't want to minimise the risks of any cancer, but I don't want you to think you cannot survive this. Some do survive and you could too, with the treatment.

Cancer is horrible, and all the more so because you can look perfectly normal on the outside and not know you have it. That is what makes it so insidious.

You are not this cancer, you are stronger.

cheekygeeky · 18/04/2014 07:36

Thinking of you today biscuits. I've been waiting for your updates and am so sorry you are going through this. I can offer no practical help as I'm too far away but you are in my thoughts and prayers.

PlumpPartridge · 18/04/2014 07:38

I'm so sorry this is happening op.

Is there anything you can possibly do to keep busy? Maybe think about drafting letters or video recordings for your kids. I know you probably don't want to seriously consider these things but it might feel better to be actively doing something. Alternatively, maybe pass the time knitting stuff for a woolly hug project or something.

I apologise if that is a bloody stupid suggestion. Please accept the goodwill behind the ignorance Thanks

MissSusanStoHelit · 18/04/2014 07:39

Another Surrey hand to hold if you need it - I am so sorry, biscuits - please let us know if there is ANYTHING you need.

KiaOraOAotearoa · 18/04/2014 07:40

Hi :)
If you are feeling fine and not attached to those constantly beeping annoying things, you could ask the nurse in charge if you can go out for a bit. Depending on your strength/medication you could go to the nearest playground/green near the hospital when you're feeling up to it? Get a wheelie chair just in case? My local one has a playground just round the corner. It might not be possible for a little while, I have no idea, I am just trying to think how you could spend a bit more time with the kids.
Try wearing your own clothes, at least partially, as in:not pyjamas.
You are not locked in that room, ok?

BishB, thinking of you too, good luck next week. :)

BishB · 18/04/2014 07:41

Rachie1986 thank you.

biscuits hope you manage to express your milk to give you more (physical) comfort. Will the nurses be able to help you with this?

BishB · 18/04/2014 07:44

KiaOra thank you.

If anyone else is going through cancer treatment, there's a fabulously supportive thread in General Health that's for people with any cancer type (or their carers):

www.mumsnet.com/Talk/general_health/2032328--Tamoxigang-counting-down-to-Easter-eggs-thread-48

Original poster
biscuitsandbandages · 18/04/2014 07:56

Im in an isolation room. Not allowed to even have the dlor or window open because of infection risks. It feel s I am wasting my last weeks when I could be with my children at home

OP posts:
FreeLikeABird · 18/04/2014 07:59

I'm so sorry your going through this Biscuits, I am thinking of you and your lovely family xx

weebarra · 18/04/2014 08:00

Can the docs give you anything to halt milk production? I couldn't because of the hormones related to breast cancer but I totally empathise with you as giving up breastfeeding has been on of the hardest things so far about treatment. I'm not going to tell you to stay strong either - just keep breathing in and out.

ajandjjmum · 18/04/2014 08:01

What a truly awful situation to find yourself in biscuits - you have had so much to take in, in such a short time. Just wanted you to know that you're not alone - sending you thoughts and love.

Mama1980 · 18/04/2014 08:04

I am so sorry this is happening to you biscuits.
My situation was different but I do know what's it's like to be stuck in icu for weeks with babies at home who need you. The frustration is overwhelming. My 6 year old didn't really see me for weeks, he couldn't cope with the hospital and it was a horrible feeling.
You have every right to rail at the unfairness of it all, it isn't fair at all.
Have you a kindle or books to read? They helped keep me sane, and so long as I didn't charge it there they didn't mind me having it.
I'm in the south and happy to help in any way I can. If not I'm sure there is someone more local than me. I found some truly amazing support here.
Firmly hand holding. X