My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
What a wally I am, I have sorted it out ladies, add me if you want to. Don't know what I did at the beginning for that to happen??
Love to all just a brief one as it has been a long day, we had a burial of the guinea pig today (I must add it was 7 years old) so it had a good life but both my girls were a bit upset.... our pets seem to last forever so these have spanned Jasmines life and lots of Emily's... Oddly it gave me the chance to speak about things to Jasmine... and to explain what had happened. She knows that Jon wont get better but now she is now more aware that things do die. We focussed on the guinea pig and she didn't mention Jon but I know this may bring questions so I will take them as they come... a week is a long time in the life of a 4 year old.
Emily was very brave and has decided to show the remaining guinea pig more attention now he is all alone.... such irony...
Thanks for the well wishes for the flight. I can't wait to see my dad. I miss him and feel so sad that he is going through this. It will be hard to leave at the end of the trip but hope we can make the most of it while I'm there. Radiotherapy ends next week so we've organised a short break in a cottage by the sea. I'm hoping to take him on a family holiday abroad later in the year if he feels well enough. I can see from your experiences that this will need some advance planning!
Debbie great that your parents are having a good time. They deserve that relaxation & escape (you probably need a holiday too!)
Lesley hope your Dad is feeling brighter today. This clot must feel a bit like one more thing he really didn't need.
Carrie I hope you have progress with getting B home. Finger crossed for you here. Isn't NZ a wonderful country. It's a lovely profile pic. You look like you had happy times there, it's a special place.
Gayle hope the holiday organisation is going well. I can't remember - where are you going? It will be great once you set off - I was looking at your profile pics, it looks like you've enjoyed lots of holidays together.
Jay thinking of you. I think you're right. For young children it will make it easier for them to understand some things having experienced their pet dying and might make it easier for them to ask/talk about things they were unsure about before. Doesn't make this any easier though. How hard for you all. How old is your other daughter?
Finally got insurance all fixed out today thank goodness, not even a docs report needed just that the docs know Martin is going and that we have E112, which we do thank goodness if anyone else is looking I recomend them MIA Mastertravel 01689859102 if anyone needs them they were fantastic no messing about 10 mins and it was all done insurance docs are in the post now.
Diane, we have just booked the normandy hotel for the night before as the flight is 5.40 am it will be a struggle getting Martin up and organised, thats out in your neck of the woods is it ok?? Hope you are all well lovely to meet you both yesterday xx
Carrie, so sorry to hear that B is still not home with you hope that you are baring up ok. xx
Becca, hope you and the family are ok after your news yesterday, it was really nice to meet you, take a note of that number for insurance for your trip to SA. xx
Lisa, welcome to our little group I hope its helpful to you, Illnois I have been there a few times I have family in Indiana. xx
Greentree, it does take a fair bit of organising to get a break but I am sure it will all be worth it. xx
Jay, Martines rabbit died just before christmas, it is soo upsetting for the kids on top of everything else now that they have to face, hope Jon is improving xx
Debbie like Diane says we were all at the hospital yesterday so we wont be there next week unfortunetley lets us no how you get on keep in touch if you need any advice pm me and I will give my telephone number. xx
just a brief update from me I have been reading all your news but sorry dont have time to reply to you all at this time, Blair is quite unwell again and he is quite demanding and I am feeling so tired he is asleep at the moment I too am going for a lie down while I can we went for Blairs scan yesterday shall find out results in about 2 weeks its such a long wait my turn next week for mine anyway peeps of for a lie down speak to all later you lovely people.
Super speedy one from me got an hours peace before i get the kids so going to chill for a while but Izzy I just wanted to send you a big hug and say that i have been thinking of you loads - keep going your doing an amazing job. xxxxxxxxxxxxxxxxxxx Emma xxxxxxx
Hi all trytodo a quick post(if thats possible) Gayle-Dianne thankyou both for your support,I really hope Dr J takes Dad on next week and the trial begins....decided to throw him suprise party if he gets accepted hope to see you both in the near future on tuesdays??
Izzy-sorry things are really tiring for you at the moment but keep your chin up petal and get as much rest as you possibly can,I know its difficult but try not to worry about the results its exausting.
Carrie-Jay thinking of you both going through such difficult times....sending you the strength to carry on smiling your amazing ladies!!!
Greentree-wishing you lots of fun and laughter with your Dad have agreat time in the cottage!!
Emma-Hope the family are all ok and the trial is still going well If Ive missed anyone Im sorry really tired been on the phone with sheffield glasgow london .......the list goes on ...Take care all Debbie xx
Hope everyone is ready because I think it might be another long post. Sorry!
Well, I hope we’ve got this stupid situation with the gas certificate sorted out, I only hope it’s in time to get B home on Friday. I explained our situation today to a very understanding lady at British Gas who faxed the relevant paperwork through to the community nursing team who have now ordered all the equipment we will need. I will just ring them in the morning to check that it can be delivered on Friday morning as an ambulance has to be ordered to bring him home and carers have to be organised. Keep your fingers and toes crossed for us.
Emma – hope you’re all ok and that Matthew is continuing to improve.
Izzy – sorry to heat that Blair is unwell again and that he is being so demanding. It must be so hard for you. It’s horrible too that you have to wait two weeks for his scan results. Although we were told what we didn’t want to hear, we found out on the same day as B’s scan. How many weeks will you be when you have your scan. I think timings for scans have changes since I had my two?
Gayle – I hope that now you’ve finally managed to get your insurance sorted out you can enjoy getting ready for your holiday. Will you be staying in a hotel or an apartment?
Green Tree – hope the packing is coming along well. I don’t envy you the journey. But now having done that journey other journeys seem a doddle. When we flew out for our honeymoon we flew to Sydney and spent a couple of nights there, so the journey wasn’t so long, but on the way back we flew from Wellington and had to change at Sydney and the refuel in Singapore. That was a long trip.
Jay – sorry to hear about the guinea pig. As some of the others have said it can be a helpful way of introducing children to difficult subjects and giving you a way to talk about them. Hope Jon is more comfortable, are his relatives still with you?
Diane – thanks for helping me get the friend thing sorted out. It must be nice for a few of you to be under the same hospital and to get the chance to meet up. I must admit there are things I would love to discuss about the hospital we are under, the consultant and the Mac nurse with someone else who has had experience of them.
Debbie – sounds like your mum and dad are really enjoying their holiday. How are all your efforts re the hospital coming along? Oops! I’ve just read your post from 10th March and I think it’s answered my question! Hope you manage to get the travel and accommodation sorted out easily.
Lesley – I’ve had the ‘I wish I was dead’ thing too. It breaks your heart doesn’t it? B just wasn’t that sort of person, he was so upbeat and it’s horrible to see him as he is now. Hope your dad’s leg is getting better, are the district nurses still being helpful? Hope you’re feeling a bit brighter too.
Lisa – Hi! Sorry that you’ve had to find us, but hope that we can help. I know that I have been helped enormously by everyone’s advice, good wishes and encouragement and also by having somewhere that I can chat with people who know what I am going through. I don’t know what I would do without them. B sounds in a similar state to your dad. His last day at work was 20th October 2008. Now his left side is useless, he can’t stand and is finding it more and more difficult to communicate. I was told today that he probably may only have 6 weeks.
Joan – thinking of you.
Pinklinzangel – thanks for your thoughts. As I wrote earlier, I think we may have it sorted now. Fingers crossed. I’ve just read your profile and I’m so sorry to hear about your dad. It’s hard, it never goes away, over time it does get slightly easier, but I’m speaking 12 years on from my dad dying.
I’m off to make some ovaltine now. How times change, not so long ago it would either have been a few glasses of wine or a short! I’ll then come back on the site to see if there’s anyone else to catch up with.
Love and hugs to you all and to anyone I’ve not mentioned.
Gayle - woo hoo, hello Benidorm here you come (or should I say ola!). Great thats all sorted out.
Izzy - what a long wait for you, you must be exhausted physically and mentally....hope your looking after yourself too. Big hug.
just a real quickie as just in from hospital and have been there most of the day. My dad was taken in again after blood results came back which were taken from the district nurses this morning. The whole of his leg (the one with the thrombosis) and upper back have went black and bruised. The other leg started getting painful too and they (think) he might have a hernia now but tests will tell us more tomorrow. It just breaks my heart what this horrible illness does to people.
Will catch up properly later...have brought in a fish supper and me and my mum are going to have that now. Ambers delighted her nana is here as she gets to sleep in the roll out Pooh Bear bed, such a novelty!! exhaauuuuuusted. Lesley zzzzzzzzzzzzzzzzz x
PS Debbie, your profile picture is only small, I'm getting old and my eyesite is fading and can't see it properly. is it your wedding photo because I'm a sucker for wedding pictures?
