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High dose chemo and beyond. Onwards and upwards hopefully!

(1000 Posts)
Trazzletoes Mon 25-Feb-13 21:42:02

Another continuation thread for Joseph's ongoing fight against the aggressive cancer, neuroblastoma.

onedev Wed 03-Apr-13 19:08:58

Oh Trazzle, sorry to hear the rollercoaster continues. Lovely to hear the positive news but obviously agonising for you with all the unknowns.

Can anyone else sit with Joe tomorrow to let you get home quickly for a cuddle? It's so hard & you're pulled in all directions so it must be exhausting.

Really wish there was something I could say or do - but please know that your strength is amazing & you will all get through this.

Glad you enjoyed some chocolate smile

Trazzletoes Wed 03-Apr-13 19:11:12

onedev unfortunately there isn't really anyone. He is still on limited visitors.

Badvoc Wed 03-Apr-13 19:15:21

Thinking of you all x

BarmeeMarmee Wed 03-Apr-13 21:35:47

Trazzles sorry to hear that things aren't going as you would have hoped. You must be missing DD sad. Glad Joe is managing to play a bit now, however briefly and that the neutrophils are stable. Two positives at least! Gingers crossed his liver starts to play ball...

ToffeeWhirl Wed 03-Apr-13 21:59:09

Sorry to hear Joe's situation is so complicated. It must be absolutely exhausting and harrowing for you. I really hope the liver problem is sorted out soon. And I'm so sorry too that you are denied time with your DD because of this illness. It's so unfair on all of you sad.

Thinking of you all. x

drjohnsonscat Wed 03-Apr-13 22:11:20

So glad to hear the neutrophils have jumped up. But hope the liver starts improving too. You need a run of good news, some cuddles with DD and some sunshine. Hope you get all that soon

Trazzles I'm sorry your seemingly endless rollercoaster continues. It really does seem that every glimmer of light has a shadow.

I now cross my gingers and splodge away for clarity on radiotherapy, the best cuddle ever on Saturday, a good liver story over the coming days and your diet (you crazy and yet very inspiring loon) continuing to make you feel good.

I continue to hold you and yours close in my thoughts.

Trazzletoes Wed 03-Apr-13 22:40:11

Tea I DID suspect I was a little bonkers for going on a diet

And then I weighed myself.

And came to the realisation that I was 1 stone 7lbs heavier than the heaviest I had ever sworn I would let myself become.

Joe should be through the worst of this treatment now. I cannot use his illness as an excuse for my in healthiness any longer. It's not a massive diet, but I have several stone to lose. And plenty of time to do it in.

It's just the realisation that its ok to feel a but hungry before your next meal, and the solution probably isn't to eat a whole pack of custard creams. That a treat is exactly that - a treat. Not an everyday occurrence.

It's not good for either of the DCs to see me eat rubbish constantly and have such a negative relationship with food. Now is the time for me to do something about it. I can find all the excuses in the world that I want to about why it's not the right time, and poor me, how can I cope? And oh I deserve a massive bar of chocolate because its a hard week and I'm exhausted.

But I owe it to my family to be healthier for them and I owe it to myself. I look at myself and it disgusts me (disclaimer: this is my personal view of myself and no comment on any other person's size or shape or whatever). I have to do something and the longer I leave it the harder it will get.

onedev Wed 03-Apr-13 22:47:17

Good luck with it then Trazzle - will be good to feel in control & feel better about yourself (although I'm sure you look lovely & not disgusting in the slightest!).

hellohellohihi Thu 04-Apr-13 08:37:27

Sounds like a strong place to be Trazzle and if that brings some positivity into your lives go for it, just don't run yourself ragged/tired/hungry/stressed/guilty about food, k?

Great news on the neutrophils and the fact that Joe can get out of bed to play smile This sounds like a big leap forward from when you were posting before, even though it might not feel it from your side... I hope his liver is ok and they suss out what to do for it asap.

I'm sorry you're missing DD, that must really suck on top of everything else.

My heart aches for you all being pulled in so many difficult directions. Positive vibes, and plenty of light (warm and sunny) splodges from snowy Essex.

Ahhh Trazzle. Gae'wan yerself hen. Yer a braw lass. grin

I've just taken control of eating too and I can completely understand your sentiment though not the eating of custard creams. If you haven't already found it I can thoroughly recommend MFP or My Fitness Pal for monitoring food in versus energy out, Jillian Michaels for toning up in a short period of time and in an enclosed space, and Gin and slimline tonic for a low calorie drink if required. Oh, and peppermint tea for powering on through hunger pangs.

<adds avoiding custard creams to list of things that gingers are crossed for>

SocialGrace Thu 04-Apr-13 09:34:34

Trazzles, I second MFP and Jillian Michaels; whilst a diet in times of stress could seem counter-intuitive, it could actually help give you back a sense of control over at least one thing in your life. The combination of the 2 programmes helped me lose 2 stone in about 10 months, and has helped me keep it off for over a year now (with a few seasonal wobbles...).

Frustrating about the liver; hope that they can provide some answers for you and Joe

Sending positive thoughts your way smile

Almostfifty Thu 04-Apr-13 10:28:47

I hope this morning's chat is positive Trazzles. Fingers crossed.

As to the diet, if that's what you want to do, then I'm sure it'll be good for you to focus slightly on something that isn't Joe related. It'll also make you feel healthier, as you'll only be eating good food, not quick fix remedies. You're a very strong person, I bet you do it easily.

Trazzles, I am in awe of you considering going on a diet but your reasoning does make perfect sense and it may be a (I won't say nice because diets are not nice imo) diversion at times.

I am supposed to be on MFP but have lapsed dreadfully over the past 8 months and put on nearly two stone.
Come on MFP we will kick eachother's backsides motivate eachother smile

Hope Joe's liver begins to behave itself soon. You are all still very much in my thoughts xx

Trazzletoes Thu 04-Apr-13 11:45:43

Ooh yes, thanks for tips. I'm on my fitness pal already! Tis blinking amazing! It has really made me think about the benefit of what I'm putting in to my body.

Don't worry, I'm really not overdoing it. Slow and steady wins the race, eh?!

Meeting this morning was good - just talking about what will happen with the radiotherapy and possible side effects.

It really sucks that cancer treatment is carcinogenic in itself. But again we have no choice. And at least it is just on his abdomen. DH and I were anxious that, because he had secondary tumours in his head that he might need radiotherapy there too but he doesn't. Phew!

He'll be tattooed though!!! Watch out for me on the "I think tattoos are really chivvy" threads where I can pop up and announce that I let my 3yo get some grin

Trazzletoes Thu 04-Apr-13 11:47:18

Tbh it's not really a diet anyway, it's a lifestyle change. We were reminded today of the importance of J growing up with a healthy diet and active lifestyle to try and limit long-term side effects, so it will hopefully benefit us all round.

superfluouscurves Thu 04-Apr-13 13:52:20

On the road atm Trazzles so forgive brief post from dh's technology, but just wanted to say "hi" and that we are all still thinking of you and yours - good news about radiotherapy too! XXX (Note silence about MFP and dieting in general wink)

WHOOOOOOOOOP .... to not needing radiotherapy on his bonce.

<innocent face> Will he be having a penguin or a big heart with Mum in it?

Hurrah to new healthy diets and lifestyles .... shame they don't have [broccoli]

Trazzles, so much sympathy for you re missing Dd.

Glad no radio on head. And glad neutrophils better, and that Joe is gradually feeling able to play.

Good for you re diet. Very impressive. Go easy on yourself though!

thewhistler Thu 04-Apr-13 20:19:32

Trazzle, echoing everyone's posts of solidarity and thinking of you.

kohl Thu 04-Apr-13 23:04:05

Well, apparently swallows and anchors are vaair fashionable in the tattoo world atm.....
It sucks ass that there is such a huge gap before you see DD again, splodge splodgey splodge.

onedev Fri 05-Apr-13 00:06:03

Splodges from here too smile

Trazzletoes Fri 05-Apr-13 09:04:12

Joe a pain meds are being reduced to 5 somethings per something this morning! (They were 40 at his worst).

Yesterday, the Dr came round to talk about what needs to happen and what shape he has to be in before we <whispers> can go home!

Trazzletoes Fri 05-Apr-13 09:04:58

Joe's pain meds. Joe is not a pain. He's squishy and gorgeous.

Badvoc Fri 05-Apr-13 09:05:21

THats wonderful trazzles!
Am so happy for joe and you.
smile
Sending love x

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