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.

Wishing you all the best for the start of radiotherapy tomorrow DR

Just to say I am in awe at your attitude and will be thinking of you and wishing you the very best x

Good luck now that you have started the treatment Dashing. Keep posting when you can. Am cheering you on and sending you positive vibes.

Be kind to yourself!

Hello everyone, thanks so much for the good vibes and thoughts.

It's been a very busy time - I've had my first four sessions of radiotherapy. Another 11 to go. The first one was actual hell. I thought I'd manage because I'd been ok at the two moulding appointments, but the reality of being strapped down tightly by the head and struggling to breathe was a completely different thing. Mercifully, it was only that first appointment which was so awful. Good job really, because I actually started crying by the end. Anyway, enough of that. I am managing much better now - my own choice of music, Bach's violin concerti instead of the effing Beach Boys, might have something to do with that - and the sessions are shorter.

I think this whole thing is going to be harder than the first round of the disease, which I got through with almost embarrassing ease. The radio is already proving tougher than I found chemo (I was very fortunate to tolerate quite strong chemo without too much trouble, I know lots of of people have a much harder time with it) and of course having the disease in the central nervous system is a completely different ball game to having it in the bone marrow. I can't walk without support, I have a blue badge now, I fall over, I drop things.

I've come off the steroids, which I'm pleased about. Still have the revolting hamster face that goes with them, but hopefully that will pass. I think the munchies attacks are diminishing, thank goodness. As yet, nothing too awful that the steroids were holding back, let's hope it stays that way.

DC are coping brilliantly as usual. They never cease to amaze me. Their school is also providing brilliant support. They are also such a support in their way of just being: funny, affectionate, unexpected. DH is holding it all together really well but very stressed. So, probably normal for a family with cancer, really.

We've just got to the end of the DC's birthday season. We were so lucky, because in both cases other parents offered to share parties with us - how incredibly kind is that! So we had very little to do but the DC got their birthday parties. So now we can breathe out and concentrate on getting to the end of the radio. Last session is 24 Nov.

One step at a time. Thanks again to everyone who is thinking of us - and a special thank you to the person who nominated me for MN Secret Santa - very sweet of you to think of me!

Have had a namechange but posted before.

Go Redhead, sounds awful but you sound like you're not taking any shit from the horrible helmet :)

Hello Dashing.

For some reason I cannot sleep tonight so I find myself thinking of you and others on MN who are having really tough times just now. Sometimes I wonder about the unfairness of it all and yet I never hear you complain, despite having radiotherapy practically every day.

I imagine the children cope so well as they see you getting on with it and you and your DH not showing your pain and anxiety to them. I hope your DH has some support too.

Cheers to you Dashing! You are a brave and inspirational woman.

ChippingInLatteLover >>
ChillngGrinBloodLover here, out of my Halloween outfit! :)

It's lovely to hear from you. I kept checking in to see if you'd posted, but didn't want to keep adding posts incase it made you feel under pressure to reply.

I'm glad they got to have parties and yes, lovely of the other parents to share. It's things like that, that make you feel cared about isn't it. I'm sure people would love to do more for you, so you know the drill! Don't be afraid to ask!

I hope you're giving that chaise longue a good work out!

You and all the family are doing well x. I feel for all of you, all going through this together, but differently x

I didn't know they strapped you Dow n for radio, no one has ever mentioned that before, other than with very small children. That is hideous and, like you, I'd very very much struggle with that, let alone nit really being able to breathe. How long was your first apt?

Are you still having chemo alongside this?

Falling over and dropping things, not being able walk etc it's such a lot to cope with physically, let alone emotionally.

Bastard fucking cancer :(

You said 'Anyway, enough of that'. If you want to post about the details then do. It might help to have somewhere to off load the ghastliness of it all, where you don't have to protect anyone else's feelings...totally up to you, just don't feel you can't or shouldn't x

Like Chippingin, I've been thinking about you, DashingRedhead, and checking in to see how you're doing. The first radiotherapy treatment sounds vile. Glad it's not been so awful for you since then, and hopefully this treatment phase will do its work, and pass as quickly as possible.

You are a remarkable woman: always so positive though I'm sure you don't always feel it. And I agree with applefalling.. I'm sure your children are coping so well because they have wonderful parents who are facing this head on and remaining strong.

Has there been any update re: a possible stem cell transplant? I am banging the drum for the cause, and encouraging everyone to sign up as a potential donor... Since donating last month, I've experienced first hand that its an incredibly straightforward and fairly routine thing these days, with the potential to save a life. What could be better?

Sending positive thoughts your way- you're an inspiration.

Last week of radio, you're nearly there :-)

Hope you're doing well. My dad had the mask thing screwed to the bed for his radio, and he did not like it at all. And the cumulative effect is shite, isn't it. Hope you're holding up.

Thinking of you and your family.

Dashing-just sending best wishes your way, counting down now to the end of your chemo!

Cheering you on!

thinking of you.

Just sending you a big big hug.

How are you Dashing?

Thinking of you Dashing, and sending you prayers and positive vibes!

Stay strong.

Thinking of you x

How are you getting on? Hope you've finished the radiotherapy now as planned.

I keep lurking on your thread and thought I should actually say hello!

Still checking in to see how your doing. X

DashingRedhead, I think about you regularly. I hope you're doing ok xx

DashingRedhead, thinking of you.

Thinking of you

I too am thinking of you dashing xx

Dashing... I know from your most recent post that you were getting some pretty nasty effects from the illness and treatment.
I hope that even if you're not able to post right now, you're able to read people's good wishes and feel the army of supporters behind you.
I think about you often and I hope you and your family are doing ok and getting the real life support you need too

Hi love, I just saw your 'thank you' on the Christmas Thread. I wish I could take the credit, but I can't! I just wanted you to know that I'm still thinking of you and that it was lovely to see your post. I'm sorry that it's so scary, I wish I could hold your hand IRL. Take care xxx

Hi Dashing,

I keep checking to see how you are doing. Echoing Chippings post, lovely to see you are still posting, and sending prayers and positive thoughts your way for 2015.

All the very best xx

Hi everyone, sorry for the very long radio silence. It's been quite a difficult time. Let's put it this way, I don't believe I have ever been exhausted in the way cranio-spinal radiotherapy flattened me out. You wouldn't believe how awful the whole thing made me feel. And for the first time since I got ill, I've had severe nausea. It's been going on for more than a month now.

I'm back in hospital (boo) as of Boxing Day with an infection which might be in my Hickman line. Just starting to feel a little better today. It's been a shocker.

And we've recently found out that the transplant - I was due in the Marsden on 4 Jan - has to be postponed because they found some kind of medical problem in the donor. Could be a 3-month delay.

So it really has been a roller coaster, as you can see.

But one of the high points was my lovely MN Secret Santa present, which included a little something for each one of us! That was just lovely - if you're reading, Santa, huge thank you from all of us!