We Talk Brain Tumours

Hi Pam, sending you huge hugs - Charlotte tells me you guys are Brentford fans and fancy her mate is Leon Legge?????  Sounds like you are having a tough time with NHS but you are coping so well (yes I know u will be saying I m not) but you are honey.  

Alan still coughing up phelegm with blood staining but I am assured by all this is a burst capillary.  Foot swollen again and DN seems to think this is ok no need to visit just elevate!!! 

Had an absolute disaster when we lost all SKY and the air was blue for last 24 hours but found out this was due to snow on our dish which has now melted and normal service has been regained  -

After being told by everyone I needed a break went out with my daughter for a couple hours yesterday and had my first glass of vino in a month was very enjoyable but whilst I was out my son managed to run over my netbook with his dad in the commode chair and completely wreck it.  Sounds silly but I was absolutely heartbroken in the grand scheme of things this really should not matter but Alan had bought me my pink notebook for my last birthday and was my lifeline (I am currently on my daughters laptop) Alan was so sweet this morning and made me order a replacement straight away telling me he loved me very much I got so upset over this as my man for a while was completely back with me.  

Sending love and strength to you all  Julie xxxx

Pam should read fancy her mate being Leon ....xx

Ali was on Furosemide for fluid retention as she had swollen calfs/ankles/feet.  I spent long hours trying to massage the fluid back up her legs, but I'm not sure it did any good other than the theraputic aspect of it.

I think that the swelling is largely due to inactivity.

Woke up, checked diary...

No blood tests, no chemo to collect, no doctor to see, no diabetes check, no counselling, no pain management for hip, no MRIs ....free week?
Oh yes I remember husband is having minor op to-day, knew there had to be a reason!

If its not one of mine its the other. Heigh ho, heigh ho and off again we go....

xxxxx

Julie

Tony has been a Brentford fan since his Dad took him to Griffin Park at seven years old. Of course, with that level of dedication the rest of the family didn't really have any choice! The manager and some of the players put together a video for Tony and sent their wishes and messages of support to him. It was so lovely for Tony. Uwe Rossler, the manager has had his own battle with cancer and it was lovely for Tony to get a personal message from him.

You were right first time Julie - he's quite cute that Leon Legge! ;o) 

Tony developed quite severe DVT very soon after he first started to get poorly. Despite the high doses of tinzaparin and now Clexane he has never been able to get it under control. Successive medical professionals have all said the same thing. Anti-coagulants are given to keep the blood correctly balanced and not to cure existing DVT symptoms. If the blood is correctly balanced it will, over time, sort out the clots on its own. We have also been told many many times that the best way to deal with it is for Tony to keep his feet up above his knees every time he could. Of course, he always ignored it, never listened and consequently, it never got better. Like Pete, I have also tried massaging his legs without much of a result. We also invested in a very expensive circulation booster machine which helped a little but not really very much. l think I used it more than Tony! Was very relaxing.

I believe Charlie and Charlotte are planning to meet up in Brighton? That would be nice. I like the idea of them supporting each other. Sounds good in theory, hope it also works out in reality. It sounds like they also have a few other things in common other than their poor Dads. Brentford and horses. Let's hope a predisposition to clearing out the family booze cupboard isn't one of them!

Sorry to hear you've been having a bad time. It's lovely that you are able to go out with your daughter and have a little tipple. It's nice to do something normal for a while to keep us all sane. I'm so glad Alan has been able to replace your Notebook. It means that you can still look at the new one and think of him. I suspect this one will come to mean something even more important.  I absolutely completely understand your reaction. If anybody went near my lovely laptop I would kill them with my bear hands. (That wasn't a spelling mistake I do have large hairy hands). 

Loads of love.

Pam

x

Must have been typing my post when you put yours up.

Hope the op goes well. Make the most of the quiet time and try to get some rest yourself.

Pam

x

Feet above his knees? Poor Tony! I meant feet above his hips!

Tired head today. 

Pam

x

Marney,

Welcome aboard our train. I think the loveliest people in the world are on here and will support you in whichever way they can.

Pam,

Dad had three syringe drivers in the end. Once the diamorph and midazolam went in, he was pain-free. He was pretty much unconscious but was able to raise his eyebrows and squeeze our hands and were some of the best days I had ever spent with him (very hard to understand, I know). I got great comfort just from sitting with him and gently stroking his hands (his skin was extremely sensitive and any deep level of touch was painful for him) so I understand how your son feels. Keep going Pam, you are such an inspiration to carers everywhere. Tony waving his towel around to Hey Jude is testament to that!

Hello All,

Just catching up on all of your news. Haven't felt in a posting kind of mood but am still walking with you all silently.

We had a midnight dash to A&E with one of my daughters and the dreaded croup the other day which developed in to an upper respiratory tract infection so it's been pretty miserable here. On top of that we had a letter from school to say my eldest son hasn't been doing any of his GCSE coursework. He's always been such a good boy - why choose year 11 to go off the rails?!!! I feel terribly guilty that I've been so busy worrying about mum that I've neglected him ...

It has been nice to know that mum is being looked after my sister - one more worry I can strike off my list. It has left me with lots of time to remember dad and, stupid as it sounds, I still can't believe he's gone and that I'll never see him again. Eugh I hate the grieving process - one step forward and tweleve back ...

Love and thoughts to all

Naomi.xx

Wow Naomi!

Poor you. Both of my kids had croup when they were younger. It's awful for them to go through it but also awful to listen to somebody struggling with it. I remember sitting in the bathroom with Charlie on my knee, the doors and windows closed with the shower running on hot to build up the steam. Horrible illness. I hope she's OK now. 

I have more stories of rebellion and bad behaviour about Charlie at school than I ever imagined possible from one child. At the age of 8 he actually clung to the windscreen wipers on my car as I tried to drive away from his school one morning, screaming for me to take him home. He hated school, every school at every level. He never really got any better, just taller and more difficult to manage. He's got his head on straight now but only just and he's 22! He got there eventually though. I hope you have it a little easier with yours. Try not to worry too much. He'll come round. They all do. 

I hope your Mum is having a good time in New Zealand. My sister has lived in New Zealand for over 40 years now and I am planning to go and spend some time with her later in the year. She lost her husband to prostate cancer two years ago now so I know I will be in good company. Well, I hope I will! You never know with families. 

Reading your post has reminded me that this is all going to affect the kids quite badly. I coped really well when my own Dad died. He had Parkinson's Disease and his death was painfully slow (over ten years) and it really was a blessed relief when he went. We also weren't that close either and he lived in another part of the country so I wasn't left with a massive hole in my life in the same way that you have been. But your post reminded me of how it can feel to lose a parent and it prompted me to have a chat with Fay last night to check that she is OK. She clearly is not OK. Neither is Charlie. They both adore their father and are very very close to him. I have spent the last few days in a bit of a fog to be honest. Have let things slide a little, found it hard to concentrate, have forgotten some things that I really ought not to forget and have let the kids step in and pick up the slack. Probably spent too much time sitting on my laptop trying to pretend this isn't happening if I'm honest. I think I need to give myself a bit of a wake up and get my focus back. Tony will pass very soon now and I need to gather my strength for all of us. So thank you for the reminder Naomi. It was much needed. Today will be a day of no laptops. Lots of cuddles and time with Tony and the children together.

I hope today is a good day for you and everyone.

With love and strength to all.

Pam

x