Glioblastoma Why Why Why <br/>

Hi everyone

I can’t believe how long it is since I last posted. I think I have some catching up to do. Sorry folks!

Diane – hope things are as ok as they can be with you. There is so much to do isn’t there? I loved your dream, it must have been a comfort for you. I know just what you mean about removing all signs of the illness from the house. I sent any clothes we bought during B’s illness to the hospice charity shop. Strangely though I have kept B’s RT mask (he wanted to bring it home when he finished treatment) and I like having that 3D image of him. Yes, I know it’s odd. I chickened out and didn’t go to the Job Centre, I posted the form. It sounds very similar to the Probate court in Brighton though.

Gayle – how’s your head? Have you recovered from your evening out with Emma? Five bottles!! It must have been great to get together and I’m still smiling thinking of you being woken up by the firemen.

Sallye – I hope your mum manages to get some rest now she has finished her RT. I think that when we are in the routine of going to hospital for treatment we can forget how tiring it is to do that for 6 weeks. I know just what you mean when you say that it’s hard when people are nice to you. I also find it hard to tell people that B has died. I am actually venturing out to Tesco on my own now, but dread meeting anyone who doesn’t know yet. A few weeks ago I bought myself a huge pair of sunglasses and I hide behind those too. I cope with things by trying to only put myself in situations I can cope with but I have also had times when the tears have fallen (a couple of times at work) and then I just tell people I am having a bad moment and the feeling usually passes quickly. I do still cry a lot at home, usually in bed either first thing in the morning or at night just before I go to sleep.

Eileen – just realised you’ve not posted for a while. I apologise if I’ve missed something, but hope things are as ok as they can be with you.

Lorraine – it must be so hard for you to see your mum as she is. We just are continually grieving for the person (and the life) we have lost even though they are still with us. It’s so cruel for everyone involved. I was lucky with work. As soon as B was diagnosed I was signed off, where I work they offer 6 months full pay and 6 months half pay. It made such a difference not having to worry about that side of things. B’s lack of mobility though did mean that he couldn’t have been left on his own from about early December onwards, so I had to be here for him. the words of your poem were lovely, and the bracelet will be such a special present for you. I would like to say that I hope you had a happy birthday, but I suspect that it was a difficult day for you.

Joan – as you say, David sounds such a sweet man, rather like B was. He very rarely felt sorry for himself or complained and for that I am thankful. Glad to hear you’re enjoying caravanning. Shame the weather hasn’t been better recently. Thinking of you re the scan results. Did your car behave itself?

Susan – is your dad back home now? It’s hard getting everything in place, but good if it happens. Hope the syringe driver is continuing to improve his mobility. How’s Paul?

Christie – have you come back down to earth after meeting Michael McIntyre?

Becca – I loved your description of your dad smelling lovely. Things like that can make this horrible situation a little easier to bear. I know it sounds silly, normally I don’t usually like cigarette smoke, but in certain circumstances it reminds me so much of my dad.

Julie – thinking of you both. .It’s so hard when you realise that the treatment may not have helped and you’re not sure of what then may happen. Luckily, I don’t think B ever knew this, or if he did he didn’t let on. It was also hard having to discuss this with the consultants on my own. But, while they are still with us there’s always hope. I’ve just read your later post saying about the operation. It’s such an awful position to be in having to make a decision like that. Sending you both a big hug.

Lesley – hope work’s going ok. I started back on 5^th May, so just at the end of my second week. Still only doing mornings, but it’s still 25 hours, and they seem happy for me to continue until I feel ready to do more. There is still so much to sort out and having the afternoons to do that makes it so much easier. Is your dad still in hospital, you must all be sick of the place? I hope you are all able to meet up on 2^nd, it would be lovely if we could all meet up sometime. Everyone has been so supportive on here and it seems incredible that very few of us have met anyone else on the thread. I suppose that serves me right for living at the other end of the country and not in Scotland like a lot of you.

Laura – thinking of you all as you’re beginning this journey. If you read my profile don’t be too alarmed, I think B was unlucky that his tumour was sited where it was and affected him the way it did. But we had good times through it all too. He was a very special person and I would rather have met him and gone through this than not met him at all.

Jay – thinking of you and the girls. How’s it all going?

Izzy – thinking of you too as we’ve not heard from you. Remember we are all here for you.

Dianne J – your daughter has been through so much, but it’s good to hear that everything seems to have has a positive effect. I can’t imagine how you are feeling watching her go through everything.

Rona – hope you had a good holiday. It won’t be too long before you back over here again. I bet you’re looking forward to it, and your dad can’t wait to see you too. It will be good for him to have you there when he goes for his scan. Good luck with the driving practice.

Michael – hi! So sorry you’ve had to join us. Luckily I’ve not had any experience of seizures, but I do know Peterborough as I grew up near there and moved down south 21 years ago. My mum still lives there though and I’m going to see her in a couple of weeks. I just wanted to say, cry if you need to. I know you feel you have to stay strong for everyone, but you need to look after yourself too and sometimes crying is like a safety valve.

Grantsnana, Debbie, CH thinking of you too, and anyone else I’ve not mentioned.

I knew this would be a long post but I didn’t realise it would be this long and I’ve not finished yet. I’ve managed to survive two weeks back at work (only working mornings though – 25 hours instead of 331/2) but work have been very understanding and said I can increase my hours when I feel ready. I’m trying to make sure I have things to look forward to, so I’m not sitting around feeling too sorry for myself (I’ve been doing some of that too – which I know is all part of it).

Time to shut up now as I think I will soon be wrestled from the PC so my son can use it.

Sending big hugs to all of you lovely people.

Carrie x

Becca

No words can say how sorry I am to hear about your lovely Dad, I wish you and all your lovely family the strength to get thru the weeks ahead, your Dad would have been so proud of you, as I have said in many posts to you its so hard to watch a parent go through this and Becca there is a huge part of me wishes Mum was at peace as she is bed constantly now and has no quality of life.

Folks I will post to you all another time I don't feel its approriate the now, Becca has been a huge part of this thread for so long that I am really upset tonite to post to everyone.

Short update before I do go, Mum is now in hospital bed, chest infection cleared a little but she has been in bed since last weekend, she is still eating and drinking but has no mobility now and its just so hard to see her struggle, nurses coming in 3 times a day but she hates the hoist so much that they use to lift her she shouts out at times, its horrible to hear you feel like barging in and saying please leave my mum alone but they are only doing their job, I am still working as Dad is with Mum 24/7 but my work now know just exactly how I am placed and I can get time off at anytime, which is good to know but for now I am trying to get by until I feel the time is right that I have to be with her, I broke down at my work when I went back after my holiday but it was just telling them the situation as I had been hiding the fact for a while saying she was doing ok but really knowing she was deteriorating with each seizure she has had it does not seem to be the tumour as the steriods did not make an improvement but all those seizures have taken a part of my angel away each time.

Becca (massive hugs to you) here anytime you need a chat xxx

Goodnight all.

Lorraine x