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Original poster

Children with cancer

997 replies

KinkyDoritoWithFairyLightsOn · 22/12/2011 09:31

Hi all

I'm going to start this and keep bumping it as I don't think there is a thread for supporting anybody whose child has cancer and I know there are others about. In part, this is a good thing as it shows that it is still very rare, however it doesn't feel like that when you are sitting in a children's oncology ward.

I will be around and am happy to chat to anyone who needs it.

My DD is 13. She was diagnosed with ALL in January. She has to have 2.5yrs of chemo in total, if everything goes according to plan.

I also write a blog that is listed on MN. The catchily titled: The Acute Lymphoblastic Leukaemia Diary.

Best wishes to all.

OP posts:
DianaTrent · 29/11/2012 00:24

Actually the new biscotti Baileys is better than I thought. And why did I buy two bottles of Baileys in two different flavours? WHY??

Really pleased to hear you all had a lovely weekend, min

('tis Farlo, btw, nced for a thread on who you will be when you're old and kind of like it. It suits me. Even DH says so. Guess what colour his shins are Wink )

KinkyDoritoWithJingleBellsOn · 29/11/2012 07:45

Trazzles like I need any encouragement Grin!!!! I am thinking of saving it to be festive on Saturday.

Diana You should twirl, with your new name. It is fabulous.

KinkyDoritoWithJingleBellsOn · 29/11/2012 07:45

biscotti... hmmmmmmmmm....

DianaTrent · 29/11/2012 13:23

Teacup full of gin, anyone?

KinkyDoritoWithJingleBellsOn · 02/12/2012 12:40

Had Baileys and put the tree up. Things seem better with twinkling lights.

DianaTrent · 02/12/2012 20:41

I hope everyone has had a good weekend and doesn't have a sore head after too much baileys

Trazzle I was recently talking to someone with extensive experience of both main neuroblastoma charities, and their opinion was that actually in general Neuroblastoma Alliance is a better organisation and they would strongly recommend using them wherever possible. Just thought that might be of use to you.

minmooch · 03/12/2012 07:44

Hi everyone

Sorry for my silence - have had a bit of retreating in on myself and pretending all is normal. I have been having some dark thoughts though and sorry to bring the thread down but I need to share with others who understand.

Now that the first anniversary has past and we are now entering the second year of this cancer 'journey' I think the shock is wearing off and we are into the long term of it all. I am so tired of this new life and I want to go back to my normal life. But my normal life has fucked off never to return Sad there is no pre-cancer normal any more. There is no more normal planning a holiday - cant see a time we can have a normal holiday; no more discussing a normal student life for my son - now we think of IF he gets to uni he NEEDS a uni with good disability access; no longer thinking about having THE talk with my son about precautions etc - I am worried that he will not ever kiss a girl/know what it is like to love a person; no more just jumping in the car to do anything - I have to think do we have the wheelchair/medication/hospital notes/sick bowls.

i am so fucking tired of this new normal and I don't want it. But if I don't have this new normal it means my son might not be here Sad.

Sorry - I think I definitely need to buy some Baileys. We put up and decorated our tree yesterday - as you say Kinky everything looks better with twinkly lights - although I bought some red twinkly lights for outside and they are very red and I am worried people will think I am advertising my 'wares' Grin < as if I had the energy >

Will try and find my positivity - she's hiding somewhere.

Love to everyone.

KinkyDoritoWithJingleBellsOn · 03/12/2012 10:31

Sending love min. I know exactly what you mean. It is just grinding, knackering despair. What I'm trying to do - and I am the world's worst worrier so it is not easy - is focus on the present. I am trying to deal with today and let tomorrow take care of itself. This is so incredibly hard for me as I am a person who likes to think through all of the possible outcomes and how I would deal with each one, but by stopping myself and trying to stay here, in the here and now, my mind feels a bit calmer. It is - and I don't want this to sound trite - 'going with the flow', partly because we have no other choice. No more what ifs. This whole situation has made my brain melt, but like you say, they are here still and that is what matters. The future is the future, we don't know what it will bring potentially armageddon on the 21st so we won't have to worry anymore anyway.

Remind me I have said this Grin.

And definitely get Baileys.

Stinkystockingedfeet · 05/12/2012 17:52

Just nipping in to say that ds1's end of treatment MRI scan has come back all clear! So hopefully we can now close this chapter and get on with life.

Love and best wishes to you all.

KinkyDoritoWithJingleBellsOn · 05/12/2012 18:41

Stinky what a very happy, happy Christmas ahead for all of you. I am so pleased. Xmas Smile Xmas Smile Xmas Smile Xmas Smile

minmooch · 06/12/2012 14:23

Stinky Yay, yay, yay!!!!!!!!!!!!!!!!!!!!!! What fantastic news! What a wonderful Christmas present for you all Xmas Smile I am completely thrilled for you.

minmooch · 06/12/2012 14:26

Kinky I have been trying to do as you suggest - live in the present and try not to worry too much about too far ahead. Very, very difficult though Xmas Sad

Will had lots of tears this morning - he is fed up of being 'like this', wants to 'go back to normal', it's been too long for him Xmas Sad and I can't even give him a timeline Xmas Sad

Fucking bastard cancer - just fuck the fuck off! Xmas Angry

KinkyDoritoWithJingleBellsOn · 06/12/2012 15:09

It is really, really hard, min, I know. I'm trying to do it, but am far from achieving it. I do know when I do just focus on the present moment and control my worrying brain, I feel momentarily lighter. But so tough to do.

I can understand him feeling that way. Does he have a psychologist? DD has just started to see one as everything was getting a bit much for her. She says (she is sitting here so I asked her) that it does help to have someone to talk to. She looked very serious just now as she said that she can tell psychologist things that she is frightened would upset me. I asked her if she is telling her that she has a shit mum, but she categorically denied that Xmas Grin. If he doesn't, maybe he would benefit from this?

I am feeling really fed up with everything at the moment too, like the last couple of years have totally derailed me and I just don't know what I want anymore or where I'm going. We should have been in such a better position now with work and money. I even wanted DC3. Instead, my life is one big battle and I am tired to my bones at the moment. I closed my eyes yesterday afternoon and fell asleep for 3 hours. I'm 33, but feel decades older.

Fucking, fucking, fucking bastard cancer. Xmas Angry

TrazzleMISTLEtoes · 06/12/2012 15:24

Stinky that's absolutely wonderful news. So so pleased to hear something good.

((min)) and ((kinky))

TrazzleMISTLEtoes · 06/12/2012 15:25

Oops

(( min )) and (( kinky ))

daisydancer21 · 06/12/2012 22:54

hi all, sorry for not posting...I'm still here though. Shitting myself as we get the results of the baby's MRI tomorrow. He is booked for his 7th chemo on Tuesday if his counts are ok (they're going up slower now) but they wanted a scan to see where they go from here. If there is more shrinkage they will operate and take his bladder. If there is no change, they take his prostate and bladder. If it has grown I will fucking DIE. No sleep for this kid tonight. Please pray for my baby tonight xx

Hope everyone else is not too bad xx

Jokat · 06/12/2012 22:59

I'm praying daisy. xxx

minmooch · 06/12/2012 23:08

Daisy I am praying hard for you all that results tomorrow are positive. Xxxx

KinkyDoritoWithJingleBellsOn · 07/12/2012 07:20

Will be thinking of you and praying hard for your little one. I'll be around and checking all day if you need someone to talk to. Thanks Thanks Thanks

TrazzleMISTLEtoes · 07/12/2012 08:39

Praying hard for you here Daisy

DianaTrent · 07/12/2012 10:51

Everything crossed here too for a good response.

DianaTrent · 07/12/2012 10:53

Also, big hugs to min and your brave Will.

Stinky, so very very pleased for you.

daisydancer21 · 07/12/2012 18:28

Had results back. Tumour has shrunk as predicted...by a couple of mm since last time, leaving it reduced overall from seventy eight cubic cm, to just under 7 cubic cm. And it hasn't spread anywhere at all. Relieved, but kinda numb. Going to bed as need to sleep for a week. Thanks for the well wishes, and hope you are all ok this evening xxx

TrazzleMISTLEtoes · 07/12/2012 18:53

Wonderful news daisy

Wine and Brew

Sweet dreams.

TrazzleMISTLEtoes · 07/12/2012 19:00

Diana sorry, I never thanked you for the info on the Neuroblastoma Alliance and, from first impressions, I think I would agree with your friend.

They've been very helpful and supportive.

We've been in for chemo but hoping to be discharged tonight. Had some good chats with the Nurses and Macmillan Nurses about what happens next .

We've got all the end of chemo scans lined up - including a bone marrow biopsy on Christmas Eve .

Hoping against hope that the chemo is still doing its job.

However, after this is the stem cell harvest so a possibility that Joseph will be able to go to nursery for a couple of weeks in the new year before the operation on his primary tumour.