505 replies to this topic

[ianrm]

     

[Frosty34]

Sorry to hear this mate. life can be so cruel sometimes!

 

I kinda know how your feeling.... My wife was also diagnosed with a brain tumour 7 years ago only noticed after suffering a seizure. she has now had two awake craniotomies...... As it happens she had her last operation 10 weeks ago but unfortunately during this operation she suffered a stoke which has left her paralysed on her left side so has been in rehab until yesterday. But she is home now so hopefully get into some sort of normality. well as normal as it can get....

 

Kids are so resilient to all this and definitely keep you going.

 

Stay strong buddy! hope it all goes well x

[Dan r]

I've only just caught up with this after reading the national auction thread. I've got so much respect for you being able to share such an extremely difficult situation. I haven't gone through anything like this myself but I have close friends that have and being able to talk about it is so hard but so important.
We're all hoping for the best for your family.

Sent from my G8441 using Tapatalk

[IWOOT]

Thinking of you and your family.

[TazN]

Gosh so sorry to hear how things have progressed. I know a little how you feel as mum has just started kemo, 2nd session was earlier this week.
Just be as strong as you can for her and the girls.

Thoughts are with you all.

[CocoPops]

So, another step backwards yesterday, she woke up with what looked like brain fluid leaking from her head..
So we sat around all day in Oxford John Radcliffe Hospital waiting to be admitted.

She's now under going surgery today to open the wound, check and clean it out and then treat with any antibiotics required.

Knock on effect is that she won't be able to start the Chemo on Wednesday, but let's cross that bridge when we get to it.
Looks like she will now be in hospital until at least Monday.

[PaulCP]

Jeez Lee, it never rains etc 

 

   

[ChrisS1]

Not the update we were hoping for

Try and stay strong Lee  

[Johnboyhgt]

Just discovered this thread due to the FB post, my thoughts are with you Lee.

 

As everyone has said we are all rooting for the situation to improve soon.

 

 

[ianrm]

[Andrew aka Stuwy]

[Rob3770]

Thoughts are with you all..

[CocoPops]

Thought we were due an update.

I made it to the VX National and it was soooo good to catch up with so many old friends, the fact that everyone asked about Alex demonstrated that people care. So I was thankful for that.

The auction raised over £6,000 and that will go to the Brain Tumour Charity, so hopefully that will help other families avoid some of the sh*t we've had to deal with. Alex's fund will soon stand at over £15k raised for the charity. No small feat in itself. Thanks hugely to the donating companies and individuals, but also to the bidders!

As for Alex herself, she has been home for about 3 weeks now. Getting stronger, reducing her reliance on her walking stick. We had to make a few changes around the home, shower stools, grab handles, bath chair etc. She now has a "walker" for getting out of the house, that is in one way saddening that a "not yet 40" year old needs a walker designed for an old person, but also the fact it gives her back some of her freedom is encouraging.

Our support network is invaluable. Allowing me to carry on working full time, the girls to maintain normal school routines etc.

Once again, I'd like to thank each and every one of you for your support, your messages, your banter and your encouragement to keep fighting this!

[SteveA]

Glad to hear a positive update

[MAXR]

.... It's also really great to hear you sounding more positive & upbeat.

[PaulCP]

Great to hear that Alex is getting stronger Lee.

The various aids must be seen as helping the recovery and not an inconvenience It is important that everyone keeps in the right mindset which it sounds as though you are all doing👍

[Duncan VXR]

Great to read your last update sir and happy to hear things a lot more positive all round

Edited by Duncan VXR, 10 July 2018 - 07:21 PM.

[C8RKH]

Great news Lee and hope you are able to enjoy as much normality as allowed.  Glad the support network is strong too, it will make all the difference to you all.  Best thoughts and prayers mate for you all.

[CocoPops]

Another sh*t afternoon in the BT journey.
Alex tumour has now sprouted a "new nodule of enhancement". Still in the same area, but not immediately adjoining. This is after surgery earlier this year and 3 courses of 28/5 Temozolomide. Surgery is out of question, at least thats one decision we don't need to make.

Onto Lomustine now, in a few weeks time (why does it take that long to arrange) and will be done every 6weeks.

Prognosis of "a few short months" if Lomustine isn't taken through to "positive reaction to Lomustive would be good news". So make of that what you will.

Onto the next step in this wicked journey, I don't like this rollercoaster. From the high of last week (Disneyland Paris) to the low of this week.

[Ormes]