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.
You are all making me really jealous with all that snow, its been snowing here all day, but not nearly as bad as it is where you are, Emma your photos of the kids in the snow are lovely looks like you had a fun day, Mathew really is a miralce walking to work in all that snow, when the clinics cant even keep appoointments, you too Carrie too much snow to go for RT. Oh well off to pick Martine up from school, the schools are all open up here.
From a very snowy Aberdeen its like a winter wonerland up here the kiddies are all having so much fun great to see hubby is a little better today he has been so so sick this time around thank you all so very much for all your help and advice Robin I think next time we shall try your method the only thing our doc told us to give hubby chemo first thing in the morning but dont think it will make that much difference though Jampix sorry that you find yoursel here yet another person affected by this monster hope that you are all ok Lesley,Gayle,Emma,Joan,Diane,Carrie,Jampix and everybody else.
Emma and Carrie - hope the snow hasnt stopped you getting to your appointments again today - Carrie, good to hear the RT is going well - that was an especially positive time for my dad as he felt he was doing something to "blast the bugger" as he would say.
Have a wee question - has anyone had experience of HUGE swollen ankles and feet? I struggled to get my dad's shoes on his feet yesterday, they were absolutley massive, they've been like this for a few weeks now. He had this problem weeks ago (Gayle, you told me Martin had it ages ago and was given water tabs) my dad has been on them ever since too and they initially help but they've come back with a vengence. He's on 6mg dex again so I know thats more than likely causing the trouble. Just a shame as it looks agony.
Maybe your all out building snowmen or sledging! Unfortunatley in Edinburgh were splashing about in our damnded wellies coz its raining - Bah!
No more snow has fallen but the roads are now nice and icy. The schools are still closed, the road is quiet and it sounds as though only a few trains are running. Our RT appointment is at 1.00 pm so I’m waiting to see whether we’ll get there. Also waiting to see if the Tesco shop will turn up on time. We’re running out of food and with both boys at home today there could be a riot.
Not much to say really, but just came on for something to do. The carers weren’t able to get to us yesterday but as B doesn’t have to get up early for RT, after giving him his chemo, I’m leaving him to sleep. If they don’t arrive I can get him ready later.
It sounds as though the snow is heading northwards and getting heavier so I hope all of you in Scotland don’t get too snow bound.
No snow here today either, pity I love the snow maybe it will come later.
Lesley your dads swollen ankles and feet will be down to the dex, the water tablets do help but wont take it completly away I asked at the hospital at the time about upping the dose of water tablets but they were afraid if they done that, it would dehydrate Martin, it does really look painfull although Martin said it wasnt, unfortunately it wont go away until the dex is reduced, well in thats what happened in Martins case anyway, we has to cut his shoes at one point for Martin his feet were that bad.
Emma and Carrie, hope you make it to the your hospital appointments today.
Thanks for the advice on the swollen ankles...I pretty much knew it would be the dex, they're a double edged sword but unfortunatley cant do without them. I phoned the doc and he said to double the water tablets for a few days and to get an appt at the end of the week to get checked out. Your absolutley right though, until the dex gets reduced again, they'll probably stay the same.
We have the snow down here now, hopefully its here to stay, I am just lying here on the coutch with Martin watching it, I feel quite poorly today so just going to relax all day lol.
I know what you mean about the dex they have so many nasty side effects but what would we do without them!
Well we made it down to appointment. Unfortunately B felt really poorly. On the way down he was sick a few times, his back hurt and he had a bad headache. On our list his appointment was for 1.00 pm but when we got there the ambulance crew were told we were early and the treatment was until 1.40 pm! As his mobility is poor B is transported on a stretcher so we went to wait in a side room and after a while a doctor came to see us. He’s now been given ondansetron (which he stopped taking earlier because it gave him constipation) and some codeine for the pain. More pills. He may have to up his dex too, which after dropping down last week is a bit of a blow but if it helps…
We had to wait for ages as they were running slow, and we finally got back at 4.00 pm. B is now asleep in his recliner. Let’s hope his headache goes and his mobility is better when he wakes up. It can be a problem for me to get him upstairs and even more difficult to get him out of bed when his back hurts. Before his BT he would run to ease his back ache.
So much for me saying a few days ago that he was ok at the moment, but that’s the way it goes.
B also has swelling in his feet. He now sleeps with his feet on a cushion. We find this reduces the swelling overnight. If I get a chance in the day I massage his feet and legs with E45 cream. It’s almost like his feet are covered in play dough when I do this, and you can literally squeeze away the swelling. It also helps as his feet and legs were getting very dry and he finds it relaxing.
I’ve written this as a word document. I keep losing the posts I type straight on to the thread. So apologies for this as it means I can waffle on.
