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

I hate it too Gold but up to now no queue of volunteers if I dont. Luckily mostly iron on but will still take a while as I foolishly bought extra uniform so dh only has to wash at weekends doh!

It was lovely when she reached for me. I love her but dh is her primary attachment figure. Im so glad she has that with him but its hard as a mum when she cries with me and settles as soon as she is back in his arms. She knows me but its the first time in ages she has wanted to be with me for preference. I hate that when im at the transplant centre I will only see them once a week (its over an hour away by car) she will be 9m when I get home and may not recognise me.

Just checking in on you biscuits, happy to see your neutrophils are slowly climbing!

Rest assured baby R will soon see you as her mummy. This is only her first year. You will be around for her next 50+ years :)

Oh biscuits, that has to be one of the cruellest things about this disease. Just remind yourself that you were her primary attachment figure first and nothing can take that away. You are the reason that her brain is structured in the right way for her to build the secure attachments with your DH and others while you are ill. That is what almost all of us do for our children but it is still a great gift.

She may take some time to accept you stepping back into the role after such a long time away but it won't be long before you're the one she's turning to for comfort and reassurance again and she'll never look back. She won't even remember in later years that you weren't around for a while and a few years down the line it will just feel like a blip to you too.

Here's hoping the neutrophils are up again tomorrow.

Thank you for your kind words. I hope so. I actually am ok with her being so attached to dh. He is her dad and is doing an amazing job. I would be more worried if she hadnt been able to transfer the attachment. You are right.... those first 8 weeks helped her brain grow the right way to accept someone else. I am just grateful to still be an important person in her life and the lives of my boys who I miss so much every day.

I will get back to them. I will.

You're important to all of your family - and to us all here too!

Hope the next week is a good one, and those neutophils do what they have to.

x

You're important to all of your family - and to us all here too!

And I say double, treble, million times ditto to that.

And as Goldmandra says, she won't remember this. You will be back home being a mum & giving her all the memories she needs.

Goodnight, lovely biscuits. I am an atheist so I don't pray for you but I hold you in my thoughts every night before I go to sleep & your thread is always the first one I look at every morning.

And I don't think I am alone in that.

And you will get all three of your DCs back & be posting about the mess they leave, the problems they may have etc etc.

Goodnight, you inspirational woman.

(((XXX)))

Your DH sounds lovely, just like the rest of your family, including you.

Will the transplant centre have wifi so you can Skype the children? I know it's not the same but it might help bridge the gap a little.

Just a small good night message here. Hoping mr b gets some rest soon and that youget your labels done and get home soon x

Love and support coming your way Biscuits. So much sympathy. It feels like it will never end when you're in hospital, but you will get over it. And those bad days, when it's impossible not to fear the worst: they happen, they are awful and they are like the tide and cannot be stopped. I don't know if it's just me but if I stop fighting it, it passes sooner.

One day towards the end of my treatment I was really angry and fed up, one of the senior nurses came in and told me she was glad I was! She said 'you've been far too well behaved until now'. You try to keep positive and on an even keel but it's not possible the whole time.

Do you have access to a Macmillan counsellor? Mine has been amazing. I also got to meet a woman who was a year along from her transplant and that was good too.

Remember your neutrophils are nearly there now and really soon you will be home for a while.

And spooky coincidence - my DH is coeliac and a fab gluten free baker as well.

Oh biscuits, you write so lovingly about your family and they all sound wonderful. You will be back home with them soon. You really will.

Come on neutrophils, the school uniform is waiting

Yay! Neutrophils are 0.5 so all I have to do is stay well until tomorrow evening and there is a chance they will let me home! I have been enjoying gluten free chocolate brownies as a reward and trying to resist tempting fate by packing.

I havent had any contact with macmillan. I tend to try and pretend im not ill. Denial is comforting and I hate being a patient. But maybe it would be a good idea to look into it.

yay indeed! Upwards and hopefully homewards Biscuits.

Fingers, toes, everything firmly crossed for you getting home tomorrow biscuits.

Hi Biscuits - I've been away on holiday and glad to see your neutrophils are picking up.

I wouldn't really expect you to have much to do with Macmillan - the information side of things will be much better from your team and the Leukaemia and Lymphoma Research charity. Not sure what they offer support wise as not really my field but would be worth a look. Macmillan really doesn't do leukaemia that much. In terms of a Macmillan nurse, where you are in your illness the specialist nurses you've met are going to be much much better than a community Mac nurse (just a shame you can't find one with the right balance of handholdy and knowledge ).

Without wishing to totally out myself here, I wouldn't expect my Macmillan team to have anything to do with you unless recommended by your haem team Hospital palliative care teams can be useful as an in-patient for chemo related symptoms as some of the chemo is horrid but the big supporting relationships tend to be from haematology, not Macmillan.

I love MyNametags.com who do adhesive labels which are safe to go through the dishwasher or washing machine 24 hours after sticking them on. They have lovely designs to choose from and at about £9.99 for 56 aren't too pricey. Much better than fiddling about burning your fingertips with an iron, or sewing.

Yay neutrophils!! Hope you escape home to the biscuit tin ASAP? Xxx

Shouldn't have been a ?, sorry!

Thanks kundy, hope you had a good holiday :-) the transplant nurses seem really nice and I have more information than I know what to do with. Sometimes its just having someone to rant at without upsetting them. Thank goodness for mumsnet :-)

Yes I have iron on labels which are quite quick. I tend to sew the jumpers as they are more expensive and do tend to get 'borrowed' so hard to remove labels are good.

I think I have 46 items of clothing to name (foolishly bought enough so dh doesnt have to do multiple washes as I thought I would be dead by now. Will be in hospital so still useful I guess :-)

Still well and no fevers yet. I am soooo hoping I get out tomorrow.

Are you still crocheting your blanket biscuits?

I love the thought of you and your family all snuggled under it, eating gluten free cakes on baby R's first birthday.

Havent done much on it this time as I have felt so tired and keep losing which stitch im on. Its getting there :-)

Yeay for those neutrophils!
Thinking of you snuggling down in your own bed very soon... No doubt a very full bed with your little biscuits piling in too

Hello Biscuits, just came across this thread, so sorry to hear what you're going through. I was wondering if this product might help you and your daughter to stay connected when you're apart...

mamascent.com/how-it-works/

I heard about it from a friend and can't vouch for it myself, never tried it but it might be of interest if your daughter is still taking a bottle. Apparently available through amazon. "Petals" you wear for a few hours against your skin so it's infused with your natural scent and then it attaches to the feeding bottle so the baby can still pick up your scent when feeding.

When my children are away from me, they squirt a bit of my perfume on one of my scarves and take that with them and give it a sniff at bedtime as they hate sleeping away from home but need to from time to time for school trips. Maybe something like that might help your boys for when you're in the transplant unit and they can't visit as often.

Challenging time for you and your family, wishing you strength and all the best with everything you're facing.

Thank you, thats a great idea

I'm glad to hear the blanket is still in progress biscuits. I am hopeless at crochet so full credit to you for taking on such a project.

cheese that is a lovely idea.

This biscuit is going back in the barrel!

Going home tonight to eat proper food, drink decent cuddle my babies and watch !