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sheena
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  • sandraW

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  • Didge

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Wishing you all a good new year .I am proud my husband has made it this far.praying for all carers patients family and friends that we find the strength to continue on our journey x

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Steve has slept for 2 days solid antibiotics have done nothing horrendous cough.


Phoned drs this am and have started him on new antibiotics so hopefully these will work. Hasn't eaten for 2 days but fancied some pate on toast. I forgot to give him his creon so now has belly ache too.


I'm struggling to get everything done working full time keeping house etc... Do you think now is a good time to get community nurses in? He hasn't showered or shaved for 4 days as he says can't be bothered he feels too ill. Unsure if it's because of the flu or the pc or is the pc giving him a chest infection.

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I would definitely get some help in. Having a 'bed bath' if needs be can make a person feel so much better. Of course it will be up to Steve - if he really doesn't feel up to it but at least the help will be there for him. I do hope he feels a bit better soon. Didge x

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A&E visit today. Steve in a lot of pain and chest infection worse.


He has now lost another stone in 3 weights. The Dr was good but unsure what they could do for him so has been given codeine and paracetamol for pain. So hopefully will work until we get to see oncologist on 19th.


He has scan on Tuesday. Managed to get him in bath but he was so unsteady and weak I felt saddened to see this independent person unable to do this.

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PCUK Nurse Jeni

Hi Sheena.


Sorry to hear about all that Steve is going through, and how hard things are for you trying to juggle everything.


Just a thought, when I worked at the day centre, they had a special bath facility, whereby the bath was fitted with a lift, and had a high seat in it - you probably know the type of thing I am on about? The baths move up and down, and are very easy to get in and out of - have side opening "doors", or a hoist to get the person in and out.


We used to have certain patients come in once a week for a proper bath - these were folk who probably had bed baths at other times, but were able to come and have a proper bath, and they used to really look forward to their bath. Is it worth enquiring at your nearby cancer day centre if such facilities exist? Or, as an alternative, ask for an Occupational Therapy assessment so that if there are any aids for bath or shower, they could install these, so that Steve could avail of them - it may make bathing/showering easier.


Anyhow, just some suggestions Sheena.


If he is too ill, is is anything specific, which could be hopefully helped, or is it just "in general"?


Hope Steve improves soon and the codeine works. It does cause constipation, so maybe some more fibre in his diet, and increase his water intake, if he can?


Kind regards,


Jeni.

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Thanks jeni I am going to ask for palliative care nurses to start being involved as I am sure they will know what is available for us.I am hoping that we can get a commode etc as our bathroom is down stairs and I worry in the night he is going to fall.He is looking a bit brighter today and has actually eaten some fruit and potato .I was hoping he would of been kept in hospital his sugar levels were back up to 24 they said because he hadn't eaten.I'm not getting much sleep as he is very disturbed at night.I also need to find out if I can get help with doctors bills as they are starting to get rather large.

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Hi Sheena I can really sympathise as so much you are going through is what I've been through with Mum! Mum's sugar levels are up and down and hard to stabilise! I have had a community pallative nurse and she has been a godsend so keep asking for one. They are very supportive and knowledgeable! Ask them to assess your home and involve occupational therapy as they can supply the commode etc! Mum has fallen a few times and it is not what you need!

Stay strong and keep fighting for everything you need.

Thinking of you both,

Love Sue x

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Oh Sheena,

You certainly have enough on your plate, without financial worries too, I hope you can get some help.

On a practical front I know here end of life care, is pretty good at providing all the extras needed so I hope its soon sorted for you both.

Blood sugars are so weird up and down for the most obscure reasons, which when you don't know much about them is very confusing lets hope that's sorted soon too.

Just sending a hug, and to let you know I am thinking of you both, love sandrax xx

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Do you test his blood sugar levels yourself? If so you can keep an eye on it. Eating should raise his blood sugar levels not deplete them but levels can fluctuate with PC so plans need to be flexible! Good luck and sending you lots of love x

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Didge strangely not eating can also raise your blood sugar dramatically, something to do with the body giving you extra glucose of some form to give you energy. Its all just so complicated along with the fact of PC adding to the mix. sandrax xx

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Thank you all for continuing support.


I feel Steve is in the "can't be bothered" mode at the moment. He says he just wants it over with. Spoke with his own doctor as I was angry at A&E as I felt Steve wasn't treated that well by the Dr there. He actually asked why we felt we needed to be there, why could it not wait till Monday.


He said there wasn't much he could do as no oncologist was available. Also Steve had to get dressed as 3 ambulances had arrived and they needed his bed so we had to go into waiting room. The daft thing is, he said Steve was the least sick of all the other patients. His Dr is not happy and will be looking into it. So hopefully won't have to pay the bill.

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  • 2 weeks later...

Saw oncologist today. Very shocked at Steve's weight loss.


Scan results show no change in pc but showing 2 glands that are pressing on a nerve - can't remember what he called it. Also lungs are now speckled with pin size spread. Have given Steve steroids to try boost appetite, sleeping tablet to try get him to sleep better and indigestion tablets.


Will have bloods and X-Ray in 4 weeks time. No chemo as Steve too weak. Palliative nurses will be in place sometime next week.

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Hi Sheena,


Sorry it is so tough for Steve and you at the moment. I really hope the steroids work for him, and he can regain some appetite and some weight.


Leila xx

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Hi Sheena, so sorry that Steve is not well but you're doing a wonderful job. I haven't posted for quite some time but have followed your story. Stay strong if you can.


Sue

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Sorry to hear Steve is not good. Hope the palliative people can help and inspire him! Rob had a really good home care one who encouraged him to do the things he enjoyed and make plans. This gave him some hope that there could be some nice things in the future to look forward to. xx

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Steve a bit brighter - did a bit of painting but found it to difficult instead of relaxing. He is quite shakey. Got him some puddings, foticremes as he can't tolerate fortisips anymore. Has eaten half of one and a bit of melon. He has terrible heartburn and meds don't seem to be working.


Will be seeing his own gp on Tuesday so hopefully give him something else. Any suggestions on light meals I can give him ? Everything I suggest he doesn't want. I am holding it together just but find night times hard as I keep watching him while he sleeps and am exhausted when alarm clock goes off.


Thanks for all your kind messages x

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Hi Sheena


My dad suffered terrible heartburn, he had gaviscon advance and the chewable tablets, they helped a little. When my dads appetite went downhill he liked ice cream, scrambled egg and cup a soups, think he found them easy to digest.

My thoughts are with you both


Alison xx

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