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.

[DashingRedhead]

Oops- that should say side effects! Shows how badly the brain is doing anyway!

[DashingRedhead]

So, radio starts on 4 Nov for 3 weeks. I'm going tomorrow to get my mask made (like the anti-dragon fire one Charlie Weasley has?)! Not sure after that, but will worry about it when the time comes.

Feeling strong - thanks so much to you all. MN is the best

[ChippingInLatteLover]

didebedfectsc - Shows how badly the brain is doing anyway! Nah, must be your phone/tablet/laptop

Nov 4 for 3 weeks - is that what you were expecting? Will you have to stay in?

I didn't know that you had to have a mask made for you, no-one has ever mentioned that bit before. When you said 'tomorrow' do you mean today or actually tomorrow? Do you live far from the Marsden?

Are you sure you're OK - given the time you were posting?

[MinionDave]

Sending you positive vibes and prayers, you are an inspiration xx

I Have just signed up to be a donor via delete blood cancer

[CadmiumRed]

God for the Marsden, and good for you.

You are one strong lady and your straight talking, open style is an inspiration. My wishes and vibes are with you, and I send a big firework marked 'fuck off cancer' to the skies!

Love to you and your closest - they sound a lovely family.

[Heebiejeebie]

I hope the treatment's all going well and you are reclining gracefully with your needlepoint listening to the children practising the piano (or whatever a Victorian matron does on a grey Wednesday(.

[LinesThatICouldntChange]

How are you doing, Dashing?
Good that the Marsden has a plan for you. From what I understand, radiotherapy is fairly quick, so although it will inevitably have an impact on your daily routine, at least it won't take hours. Do you have to stay in hospital? Fingers crossed you don't, and that you're able to enjoy plenty of family time alongside the treatment.

[MakeTeaNotWar]

DR from a Facebook post by a mutual friend, I think we might be in the same town & have DCs of similar age. So if you ever fancy company, a cuppa tea or anything at all, I am more than up for it

[DashingRedhead]

I'm ok. Had my last fitting of the dragoon proof balaclava yesterday! So everything is ready for the 4th. I am so impressed with the Marsden so far. Especially the staff. My 'home' hospital is Brighton (not worrying about outing myself anymore - I think it's inevitable) and the staff there are amazing so nice to think I'll be spending time somewhere as nice.

The radio will be 15 weekday sessions as an outpatient. But usually feeling increasingly groggy. They've also said you can go on feeling worse for two weeks before you start feeling better.

The time in between I've got to have some systemic weedkiller, I mean chemo. Consultants are very unhappy with my nervous system deterioration. I'm not so impressed myself to be honest. Walked to the corner shop for naice loaf of bread - a v short journey with no history of difficulties; ended up arse on pavement, unable to get myself up or use legs even if I could. Luckily a couple of builders working opposite (one of them a dad from school!) came and got me up just as one of the mums arrived for coffee so I was got up, got to the house and able to recover before I had to go for my hospital appointment. But it was frightening and disappointing. I have a crutch to walk with now and that makes a big difference.

So today I go in for one of those evil 24-hour bags. They start hydrating you at 5am because otherwise it knackers your kidneys. Then you start the actual chemo at 10am and you never stop weeing all that time. Then you stay on fluids until all the chemo is washed clear of your system and your kidneys are safe. Mine were bionic last time and cleared the stuff three days early.

BUT and this is such a huge and lovely but - they're starting all this tonight so I can be at DS's fifth birthday instead of yesterday evening . All our consultants have DC and the sympathy with which they've approached my situation with two is just amazing.

I do post at odd times - it's actually the after effects of the steroids. They're absolute buggers. I'm on a lower dose now so should be ok but because of the CNS inflammation I've been on these incredibly high doses and actually did five nights where I only got about three hours and then was up (baking cupcakes, making v thorough to-do lists). If I have to forego sleep for a while to be cured, so be it. And if I have this little extra time to show some cupboard love (it's Swiss roll for DF this morning) that can only be a good thing.

[Jenijena]

Just wanted to say morning Dashing. Happy birthday for your little one, and thinking of you today with the weed killer.

[Justyouwaitandsee]

Just reading your updates for the first time. Thank goodness for good consultants who don't give up and show empathy. And huge respect for you, not giving up and refusing to be defeated. I am sure your consultants will be inspired and motivated by your own attitude.
Sending lots of thoughts and prayers to you and your family

[Shannith]

dashing my thoughts are with you and I have just registered to donate stem cells. You are brave and inspiring x

[Rosa]

Wishing you a positive outcome and strength to face the treatment and all its side effects.

[LinesThatICouldntChange]

Ooops! - you are bloody brilliant, facing this head on and being positive. Hurrah for good consultants too.
And I'm thrilled to bits that the message about stem cell donation is getting out there and people are signing up... Having just made my donation this week I know if I can do it, anyone can! (I'm a bit of a wuss about needles, and screwed my eyes up every time one came near, and usually didn't realise when the procedure has started or finished!)
I've been looking at some amazing video clips on the donor register sites of people who've had the same or similar illnesses to you, and who years later are doing great.
Sending so many positive thoughts your way.

[Applefallingfromthetree2]

Glad to have some update Dashing and to hear how you use your energies doing positive things. Swiss roll and cupcakes-very yummy.

Thinking of you

[LinesThatICouldntChange]

Hope all is going as well as possible for you Dashing

[DashingRedhead]

Still a bit mad with the steroids, although they'll be reducing this week, but at home for half term and we'll be having lots if relaxatation time and both little Redheads have their birthdays now. In fact, the absolutely lovely nurses on our unit gave him a little party last Monday! Talk about above and beyond the call of duty!

[LinesThatICouldntChange]

That's brilliant to here you're home for half term dashingredhead. Hope you have a really chilled out time with the family.
Btw my db at 9 days post transplant is doing well and his leucocytes have begun to rise. And quite a number of people on these threads are signing up to Delete Blood Cancer which is fabulous news!

[AMinorBird]

I am so sorry that you are going through this DR and hugely admiring of your strength and positivity. I'm hoping and praying for you and your lovely family.

I can't give blood because I've previously had a blood transfusion but your story (and brilliant campaign) has made me read the fine print and I now know that this doesn't deter me from being a stem cell donor so I'm off to register now and my husband is doing likewise.

Hope you all have a lovely family time for half term.

[ChillingGrinBloodLover]

Hi Lovely, sorry I missed your update. I have a new 'Thread System' so hopefully I wont miss any more of them!

That treatment all sounds utterly, utterly vile - but thank you so much for posting about it. It really does make you stop and think that wee bit more about exactly what people are really going through. I have had a lot of family with cancer, but they really do shield you from the actual treatments and I'm not sure that's a good thing! So I hope you are talking to your friends and family and letting them know what you are really going through.

How did you do with the 24hr bag this time?

Both hospitals do sound lovely - I was welling up reading your post, very sweet of them.

How long will you have to stay away from home for your treatment at Marsden?

[Applefallingfromthetree2]

Glad you are at home for half term Dashing. I see that you are often awake and up in the wee small hours. That's a bit of a pain for sure but like you I find that it helps to do things, although cooking cakes after 3hours sleep would certainly be beyond me. Long may you have the strength to do such things!

Thinking of you.

[StillProcrastinating]

Just jumping in as another person sending positive thoughts to you. Hope the birthday party was fun, some fab medical folk out there.

Wishing you a relaxing half term!

[bensam]

So sorry to hear about your illness. I hope and pray that your treatment at the Marsden is successful x

[Itsfab]

Oh goodness. Just read this thread for the first time and it is my first knowledge of your situation, DashingRedhead.

Thank goodness for helpful builders .

Sending positive thoughts and birthday greetings .

[ArsenicChaseScream]

Thinking of you DR