tantan's blog

He's gone

2010-02-28T21:33:02Z

It's been a while since I last blogged. I never really got used to the new site once it merged. It was just too big and stressed out for me to cope with. But I thought I should tell you all that Ian died yesterday very peacefully in the hospice. It was so difficult for him towards the end. I was so glad he made it to the hospice because it gave me the chance to spend the last night with him in peace and quiet and with somebody else taking responsibility. I value that opportunity.

Witter update

2009-10-25T18:34:46Z

Not blogged for a while so I thought i'd better do an update. Ian had a blood transfusion last week as his bloods were 'off' They have taken him off the Cysplatin and Zeloda as it is not suiting him, though he had it in 2006 without too much problem, (if you ignore the fact that he ended up ventilated in ITU, but that was a minor blip!). He is now on Carboplatin. It doesn't seem to be bothering him too much, swollen feet but nothing much else. So, he seems to have plateau'd out at the moment. Since he stopped working he has taken over doing the housework, so I have my own househusband now! It's great to come home from work for a change and find the washing done and the house tidy, but I must admit I still won't let him near the iron LOL. The McMillan nurse sent a man round from welfare rights so our finances are more or less sorted out now. We don't live a high maintainance lifestyle so we have enough to live on. We are living quite a contented life now. It's just a pity that it is ever so slightly tinged with sadness. The picture is of Ian and his lovely dad who has done so much to support us, on the narrowboat. It was taken this summer on a trip up the Macclesfield canal. It's the first time i've added a picture so I hope i've sized it right.

Tantan xx

Wittering on and on and on.......

2009-09-28T19:48:09Z

Just thought i'd do an update on what's been happening. Ian went in for his chemo last Monday and has been in bed ever since. It has really taken it out of him. Up till Monday morning he was able to do some small jobs around the house meaning he had some quality of living. But once I brought him home on Tuesday all he could manage was to just get into bed. I knew he really wasn't feeling well when he asked me if I would do his meds for him. This was a bad sign as he never ever asks me to do anything for him, he will always try and do things for himself and would rather do without than ask for help. Which is daft because he knows I would always do anything for him. I think maybe he has come to terms with the fact that he can't do this on his own. I worry about how he is going to cope with this lot of chemo. Its not like when he was having his treatment, he was a lot stronger then. Nowadays he is just so weak and ill to start off with. Anyhow, I was off work for a week last week so we actually got ourselves into quite a pleasant routine. It takes about an hour to put all his meds down his Peg tube, the chemo tablets in themselves take over half an hour to dissolve!, so we would start them off while homes under the hammer was on. Tigger would come up and join us, making sure I am doing the job right! Once done we would all 3 snuggle up on the bed to comment on whether the new house owners had made a good job of them or not. Anyhow, I am back at work this week. His dad is coming up everyday so he is not 'home alone' I just wish I didn't have to go to work. But today is the start of a new week so he might start to feel a little better. Heres hoping.

Got here at last

2009-09-21T08:31:56Z

Oh my word I thought they were never going to let me in. I was starting to get a bit paranoid that everytime I tried to put my password and user name in it came up as 'blocked'. Then common sense prevailed and panic started to subside. Its a new site and everyone has to be loaded on and its the weekend. The person doing the loading is off for the weekend, come monday morning 9.00 I will have my e-mail to say I can get in, stop worrying. 9.00 monday morning VOILA! here I am! Coincidence? don't know, don't care. Here I am on the new site. Its a bit like going on holiday and finding out all about your new home isn't it. Hiya to all those I know from 'what now' and hello pleased to meet you from all those I've not met from 'share' I know its very different to what we have been using and no doubt we will all find something we don't like, but i'm sure we will get used to it. I'm off to catch up on Debs daily deliberations, I've missed about a weeks worth!

Wittering on again

2009-09-03T20:47:08Z

Just thought i'd better update my blog as its been nearly a month since my last one. Ian has decided to go for the chemo. We went to see Dr Sykes on Tuesday. We had a lot of questions we wanted to ask. However, it was the surgical Reg that was there when we walked in. We have met him before just after Ian had the peg put in, he is a really lovely chap but unfortunately couldn't answer our questions. But he was very efficient in getting Dr Sykes (the oncologist) to come and speak to us. Our questions were answered, which helped Ian to make the decision about the chemo. I am rather apprehensive about it, but its not up to me so this is one time when I have really kept my mouth shut and let him decide for himself. Anyhow, he goes next wednesday for the kidney function test. All being well he should start chemo the week after next. Tantan

just wittering on

2009-08-11T22:09:31Z

Haven't really got any 'earth moving' story to tell. Just wanted to chat to someone, even if its only a one sided conversation to the little man in the computer! I have to say that I think Ian looks a whole heap better that he did, although he says he feels just as crap as ever (i'm sure he does), he just 'seems' better in himself. It has been a whole week now since we got the news that the cancer was back, so he has been on the steroids a week. They must be doing something for him. We had a visit from the man from welfare rights. He was absolutely brilliant. I don't know whether he realised that we were still a bit in shock or what but, he just took all the paperwork we could find and took it all off our hands and went away to sort it all out for us. What a relief that was because I just wouldn't have known where to start. I can't thank him enough. He was asked to visit by the McMillan nurse, somebody on this site suggested I ring her and I am grateful to them for that. I felt a bit of a fraud asking to speak to the McMillan nurse because at the time we had been told by the surgeon that there was no signs of the cancer and if it hadn't come back by now it probably never would. Ha! what a joke that was. Only a few weeks later we find out it was back and had been there all along, probably for about 18 months before. Hindsight is a wonderful thing *sigh*

had a good day

2009-08-07T23:11:48Z

It was family friday today, the night when we all go to my sisters. Ian surprised me when I asked him if he wanted to come and said yes, cos he normally struggles with it. We had a really good night, he didn't once look as though he was struggling. Have just realised it is probably due to the steroids starting to kicking in. If he carries on like this he should feel strong enough to cope with the chemo that Dr Sykes offered. I'll talk to him in the morning about it.

Follow up not gone to plan

2009-08-05T17:22:38Z

Went back to see the surgeon today, as planned. But unfortunately things didn't go to plan. It wasn't the surgeon who was sat there when we walked in, it was Dr Sykes who has been treating Ian all along. Even though the surgeon said 4 weeks ago that there was no trace of cancer unfortunately the CT scan showed that there is, and it is now inoperable. He told us there is nothing more they could do except perhaps some palliative chemo if he wanted it. Still in the shock stage at the moment. Even though Ian has looked so bad for so long, I had started to believe the surgeons when they said there was no cancer. Silly me.

Yeah. All clear

2009-07-06T20:00:48Z

Thank God today is over. No cancer found Yeah. He has to go back to see the surgeon in 4 weeks time to see what the plan is with the adhesions. He said he would try and stretch his gullet while he was down there but couldn't manage it cos it was so narrowed, so over to plan B whatever that is. Also I asked him about the swelling too as this morning it was so bad it was closing his eye. Anyway it is just lymphoedema, (I say 'just' but you know what I mean). We can breathe again. To top it off as well he said that if the cancer hadn't come back now it probably never will!

Bags packed

2009-07-05T16:54:58Z

Well. Jimjams are packed and i've updated ian's I pod for him. I just have to take the fuse out of his feeding pump so he's not tempted to snack after midnight (just kidding!). This time tomorrow he'll have been 'investigated' and should be home again. He looks better today than he has looked for weeks and although I am a quivering wreck, I am feeling quite positive. I have had it in my head that the cancer has come back and have been feeling really sensitive lately, but I have managed to convince myself now that it hasn't and the swelling is just fluid. Hopefully it won't be long now before we find out what they can do for him. If they could just do something to stop him from choking so much it would help. I rang the Mcmillan nurse last week and she is coming on wednesday so that is another thing to feel positive about although I have got to work so I am relying on Ian to tell me everything she says! Today is a good day.

Oh the waiting!

2009-07-01T22:19:44Z

The appointment came through today for Ian to go in for his investigations. It can't come soon enough now. I didn't think he looked very well today,his face was really swollen, a lot more so than usual, there is also something that looks as though it is growing outwards and this has all come on in a matter of weeks, so naturally I am concerned. Last year we were told the cancer had come back following a ct scan, but when they did the biopsys they found them to be negative and that it was just the adhesions from radiotherapy, which was great. But this year it just 'feels' different and the fact that he has visibly deteriorated so quickly doesn't help. The problem is that his mum and dad keep telling me to be optimistic. Well I'm afraid I am not an optimist, I am a realist! prepare for the worst but hope for the best. Fortunately my family are realists too and it is nice to be able to talk frankly to them without them thinking I am being negative. With luck it will be just the adhesions causing the problem. We'll just have to wait and see.

I should learn to read forms properly

2009-06-25T21:53:52Z

We got the forms through today to apply for disability living allowance. It will take a week to fill it in. while I was going through drawers though I came across a form that our GP had given me when Ian was in ITU. I didn't know what it was for and was in too much of a state at the time to find out. Looked at it properly today. It was a DS 1500! that was 3 years ago. Do you think it will be still usable LOL

What can I say

2009-06-23T22:36:04Z

Ian has got a date for his CT scan today. 7 July, which is not far off, but a bit bizzare because they only booked him in for a scan because they said they didn't want to wait so long for the 'surgical investigations' which are actually on the 6 July!