Lots of MN handholding please - relapse

[DashingRedhead]

Hi everyone, some will have seen my posts in biscuits' threads and I know lots of you have very kindly passed on the word about my stem cell donor search. But now I need a miracle: the leukaemia is back but this time in my central nervous system.

This is not only very rare, it's also really difficult to treat: chemo intravenously but also to the central nervous system via the ventricles of the brain. It's really unpleasant, though I shan't care if it manages to cure it.

My husband and parents last week were told to start preparing for the worst. However, one of the consultants wasn't happy and I've been referred for a second opinion to the Marsden in the hope they may be able to treat me.

I'm so scared but at the same time feeling hopeful that at least they haven't given up yet. Any prayers, candles, support, good vibes you can spare, please please please think of me tomorrow. I have two DC who need their mummy and so much to live for.

Lots of healing vibes coming right at you. Xxx

Right here with you dashingredhead.
Doesn't a humane and positive consultant make a massive difference to how one feels about all things medical.

And just as an aside (don't want to hijack your thread!) - I am over 50 and am donating stem cells in a couple of weeks time. I don't know why Anthony Nolan only register people up to 30... Maybe it's a logistical thing because they're dealing with large numbers and it's a quick filter, but there is absolutely no reason why you can't donate when older. If you're a full match with someone you'll get a full health check up anyway before going ahead. So it's really great to hear so many of you out there are signing up to Delete Blood Cancer. It's an incredible feeling to be told you're a 10/10 match and to know someone is getting a real chance of knocking one of these nasty diseases on the head.

to you Dashing- you are inspirational

So glad you have a good consultant. Silver lining in having something rare is docs get very attentive to you. Thinking of you and the others walking this bumpy road

I was thinking of you yesterday and am so pleased that you have received some good news. Your consultant sounds lovely, someone you can work with and it does seem that he has seen something in you, personally and medically, that points to the real chance of a positive outcome. He knows you will grab it with both hands.

Whenever I read threads like this I am amazed at the strength individuals show despite their situation. I can't begin to imagine what it is like to walk your road at the moment but I hope it helps to know that we are all willing you on. Keep going. And yes you are inspirational!

Glad it went well with the consultant yesterday. I can't donate as I've had cancer myself but DH can!

Oh, Dashing, I'm so sorry. It sounds like Consultant No 2 is more positive so he can be our favourite!

I've registered with Delete Blood Cancer - I'm registered with ANT but never heard of DBC. I hope hope hope I can help someone.

I've seen your posts on Biscuits' thread. I can't say anything at all that will make this easier for you or your family but I sincerely wish you all the very best in beating the bastard relapse to the far side of fuck.

A consultant like that is worth their weight in gold.
Wishing you well dashing.

Have registered as donor. You can fight this

Yes, definitely the consultant does make a huge difference. He was brilliant and I'm clinging onto every word he said.

In the meantime, just trying to do as many normal things as possible: drop kids at school, make sure everyone eats their breakfast etc! I am a fiend for 19th century fiction and we have a very pretty chaise longue in the sitting room so think I shall try the Victorian maternal style of dispensing love and wisdom from there and leave all the actual work to everyone else.

Sounds like a good plan

Sending love, prayers and positive thoughts your way.

Have also just signed up with Delete Blood Cancer

The Chaise longue sounds great, and historical fiction easy to get stuck into.
I have lost count of how many times I have read Jane Austen. Give yourself as many little treats as you can.

The Marsden definitely haven't given up on you and neither have we, I guess that is true of everyone who knows you. Sending prayers and positive vibes your way -onwards and upwards!

Keep posting when you feel able.

Hi everyone - thanks again for all your support and love. It warms and strengthens me in a way it is hard to describe.

I had one of my chemo sessions today, straight into the central nervous system via a drug reservoir in my head. Luckily not sick this time but I did black out for a couple of hours. Never mind, still made it home to read to the DC and put them to bed. Then watched Bake Off on iplayer with DH while eating lots of dark choc digestives!

Living the positive life!

Hi Red today's treatment sounds bloody awful :( How often do you have to go?

Have you got a date for the radiotherapy yet?

Lovely that you were home in time & able to read stories and put the kids to bed :) I watched GBBO tonight too. I don't care what anyone else says, I like Richard, pencil & all!

I have been following your thread and have never posted anything until now. I just want to say that you are inspirational and I hope that your current treatment does the trick. Your children look gorgeous too.

you deserve all the cake on Bake off after getting through that. Pom poms waving.

Well treatment has started so that is great , one step nearer to beating this thing. It's good you can get home afterwards to see the DC and do some nice things.

Thinking of you and cheering you on!

Wishing you well. Love your positive approach. Cheering you on from afar and thinking of you.

Hi, just want to say hello, from another who has lived in the hematology world for the last 3 years. One of the most important things is the positivity of your consultants, mine at jimmys were amazing, I encountered a very different scenario at an appointment in Sheffield and I am still considering reporting the guy. I'm due to go to a patients forum in November and I've spoken with the researcher about this already. While someone is giving you hope cling to it, don't stop! Thinking of you!

thinking of you and sending hugs. my dh has an incurable brain tumour and we have 3 children, so i understand about living with a terrible diagnosis and the importance of hope. we are living each day and enjoying and laughing when we can, and the children are still able to have fun, so things are good. do you have a macmillan nurse? ours has been great, and there is a family support worker at the hospice who is very helpful too. in a way i feel these are precious days and all the more special for that. i hope you can find some peace and that the treatment is bearable. much much love to you and your family

Just heard - unlikely to have preliminary radio consultation until next week. Just got to stay patient and be positive about intrathecal...

Urgh, really? The waiting is horrible.

You will have to up your posting on MN, I find it can swallow whole days if there are some good threads :)

Blondie & Lu xx It's all crap isn't it, not bloody fair :( Lots of love & strength.

How are you DR?

Quite hopeful! I'm just off shortly to the Marsden to meet the doctor who'll be managing all my radio! I'm in great
hope that soon I'll have a treatment plan.

Also starting to get rid of some of those didebedfectsc