Getting sorted

2 minute read time.

FormerMember

24 Mar 2010

A lot has been happening - Dad did try to go to the hut on his bike but only got to the end of the road and had to come back as he got out of breath. Since then his breathing has got gradually worse and he only goes up the stairs to bed in the evening and down in the morning, we have now got a commode for when he is downstairs which he is finding a lot easier. I call it the magic commode as he was constipated before we got it and now he is back to his normal daily routine!!

He has good days like yesterday when he felt good and he wasn't as breathless and then bad days when it is a lot worse, nights are the same sometimes he is awake most of the night - usually needs to get up several times for a wee and then can't get back to sleep, or lies there worrying himself about everything - the Dr has given him a little pill for his worrying that seems to help. Other nights he manages to get a lot more sleep.

The water is being tested so we await the results.

We have met the hospice nurse who is lovely and helpful, yesterday we met the District Nurse who is also lovely so I feel we are getting sorted now. The Attendance Allowance and Blue Badge are also getting sorted.

On Monday we went back to St Georges, Dad had another x-ray and they told us that there was not a lot of difference so that was good. We had thought that his breathing might have been the fluid building up again but it appears to just be the cancer causing it. They said that he has probably got about 6 months left. They also told us that if he had chemo it would be a platinum based one - Carboplatin or Gemcitabine (Gemzar) he has to decide soon as they want to start it in about two weeks time. They went through the side effects and at the moment because Dad isn't in that much pain (only taking paracetamol at the moment) and I'm still able to take him out and about & he can still have a little social life that if he had chemo the side effects would mean he couldn't do the little he does as he would be tired etc. The hospice nurse is coming soon to talk this over with him but i know it will have to be his decision.

Dad is trying to keep a sense of humour and hardly complains but the tiredness does get to him some days.

FormerMember over 14 years ago

You Dad sounds an amazing man, and much like my dear step-dad, who also kept his sense of humour and didn't complain. I'm glad he doesn't have much pain, long may that continue. It's great that you've already got to know the hospice nurse - we found the home visits very helpful.

This must be so hard for you - but your Dad will be glad to have such a caring family around him. Thinking of you, and sending you love and strength. Val XX
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FormerMember over 14 years ago

Thank you so much Val - have been thinking of you and hoping you've been ok.

Dad had a bad day today his breathing was a lot worse and he is wondering why, I said that he had a really good day a couple of days ago and I think this is what happens and to make the best of the really good days but it is horrible to see him not being able to do much. He is not sleeping well at night again so he is thinking he may start sleeping in the chair downstairs again as it is more comfy. He is also coughing up a lot more phlegm which is annoying him.

Still I think the hospice nurse may be coming tomorrow and will be able to reassure him - and us that this is all quite normal for what he has.
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FormerMember over 14 years ago

Is it worth seeing if you can get one of those things you can put in the bed to keep your dad more upright? (We had one from the local Red Cross centre) I'm sure bed must be more comfortable than the chair. I sympathise over the coughing - that gets so tiring for the sufferer. Is your dad taking anything to help keep his airways clear from the mucus?

I think there will be good days and then not-so-good days. Just try to take each day at a time, it's the only way. XX
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FormerMember over 14 years ago

Thanks Val - Hospice nurse called round today and Dad has got thrush in his mouth and his blood pressure is low so have made appointment for him to see his GP on Monday morning. They took blood tests for liver/kidneys etc at the hospital so hopefully they'll have the results of those too.

We talked over the chemo and now I think Dad might want to try it, theres problems just having the cancer and different problems if you have chemo - anyway we'll see what the weekend brings.

She also talked about a hospital bed if Dad can't get up the stairs very easily - this would help his breathing too and she said he mustn't sit in his comfy chair all day and all night!

Try and enjoy your weekend. X X
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