Help - Husband just being diagnosed with advanced cancer!

[Jool2504]

Hi all,

Susi how did the training session go!

24 hours post chemo & he seems ok, decided to go with the advice of giving Bill the sickness pills 4 times a day instead of half an hour before he eats. He's felt a bit sick during the day but far better than expected, I've felt sick all day with a bad head!!

The GP came & had his meds changed, no more amitriptoline but now on another depression pill can't recall name similar to diazepam. Strangely he's slept better today, new meds at bedtime.

Macmillan occupational health visited were getting a bath lift & sometime for the toilet, Bills not happy but gave in reluctantly. He seemed very sad afterwards. He's now in the bath. He was up 4 times in the night hope tonight improves.

New car tomorrow hope he likes it.

Have a good evening all.

[laura]

hi jools, glad that your 1st 24hrs have passed uneventfully. long may it last, no reason why it shouldnt, good that the anti nausea tabs are doing their job, not surprised that you feel yucky! are you? sometimes 1st thing in morning i feel nauseus, just worry isnt it?

am sure your hubby feels sad, he knows his life is/has going to change, he will soon find a new "normal", hopefully as he realizes that its there to help him, and finds that it does, he should be ok, if he lost a leg in an accident he would happily use crutches to get around i guess.!!

tis lots of changes to get used to, soon become part of life. good luck and love to you both. laura xxx

[Jool2504]

Oh what a morning Bill slept from 11pm last night till 6am which was fantastic but he had a temperature of 98.3 so rang emergency no and had to take him into xx hospital, he was coherent enough to show me the way, he's been talking rubbish a bit of late. Hospital was very good took bloods & anti biotics straight into him, they said he could be in till Sunday, I left at 11 to get his pjs etc & pick up new car, Bill then rang to say the oncologist had been to see him & he could come home, so collected car & went back for him. He really is getting quite doddery on his feet & very easily confused. They took X-rays, bloods & a MRI must have been ok.

So we're home, he's had lunch in hospital then cuppa & yogurt then snoozing on sofa.

I'm exhausted again.

Susi hope today's gone ok,

Laura thanks.

[Jool2504]

Oops sorry it was 39.3

[susikus]

Gosh Jools, that was an eventful couple of days! How is Bill feeling now and how are you? I hope you're not coming down with something - that would be just the worst possible timing! Our chemo went really well, our night not so well. More tweaking of medication required! It is a case of trying to get the right things for the right person at the right time isn't it? Lots of trial and error. Are you having chemo every Wednesday? I hope you both had a good night's sleep last night, think I need a nap...

lots of love, Sue

[Jool2504]

Hi everyone,

Susi you seem to be the same as us, medication is a nightmare!

Had a terrible night Bill was hallucinating not sure if it was temp or meds, he was singing, dancing in the bed, shouting for people to be quiet, asking for a knife sat bolt upright, I rang the District Nurses who got Dr to call back, we decided to move his lorazepam to lunchtime as maybe clashing with zopyclone. My friend said when she was on zopyclone one night she was found in the garden trying to cut the lawn with scissors in her pj's.

Shakes & tremors get worse the more tired he is I can feel him vibrating through the sofa.

The best part of the day seems between about 1pm & 6pm.

Off to check his temp as says he's cold & shaky.

Good night all.

[susikus]

How was the rest of the weekend Jools? I have a feeling we are just learning the pattern and then it changes! Do you have chemo again on Wednesday? I wonder if the pattern of the last week will be repeated or whether it will be different again...

[Jool2504]

Just done a post and its not worked.

Bills still hot & cold not eating much really keep pushing the fortisip.

How did your hubby's chemo go, any reactions?

Were at my parents for the night, hope he sleeps ok he seems quite settled, he's been asleep most of the time we've been here.

[susikus]

Pete's reaction to the chemo was increased nausea and pain. We saw our MacMillan nurse this afternoon and she was careful in getting him to describe what happens and thinks it is the nausea that sets in first and then that causes movement, retching, increased pain, which in turn induces more nausea, a vicious spiral. So she thinks he should have more MST, continue the regular anti-nausea meds that he has all week and then on chemo day add in a powerful anti-nausea drug that is also sedating. She said last weekend's symptoms were not acceptable and that made me feel better about it. Today has been a better day, he has had a bit more energy (not much!) and I have done a fair bit. So now we make the most of the next few days and start all over again on Friday. Have a good day tomorrow Jools and good luck for Wed, presumably you are having chemo again that day?

[Jool2504]

Bill had his chemo yesterday, whilst he was there I found his specialist nurse to tell her about his condition, she went & had a look at him especially his left toes which are now turning black. Said she would speak to oncology consultant. When we got home the GP who came out last week rang to see how he was getting on with anti depressants, told him Bill still wasn't sleeping & worried about his toes. He came straight out. Looked at his foot & called specialist nurse who told him she would speak to oncologist next day. GP was still not happy so rang vascular team at hospital, Bill was admitted to SAU in the afternoon. He has no pulse in his left wrist & right femoral down his leg. He also has a rash on his right side of stomach. From 1pm till 9pm he had no meds so started feeling sick, in the end I had to give him his meds as he was in so much pain. He eventually was given a sandwich before I tucked him up & he drifted off to sleep around 10pm. Macmillan nurse rang during afternoon she'd had a call from specialist nurse. She's coming to visit this morning either to home or hospital. Bill could have come home but would have gone on vascular outpatients list, because he stayed in he will see one next day. It's 6am Thursday morning & wished I was with him, will go back to bed & ring ward at 8am, the nurse said he maybe moved during night if beds available on vascular ward, personally think he should be on oncology ward so they can watch for side effects from yesterday's chemo! Lets hope today brings better results, the GP thought he has start on gangrene in his toes.

[susikus]

Oh Jools, hugs for you, what a long, exhausting and unhappy day for you. No wonder you are up early and worrying. I hope today brings better news and that they can do something for Bill's foot and rash, keep us posted. Lots of love, Sue

[DRAD3]

Hi Jools

So sorry to hear about Bill's difficult time. Good to know that he is in hospital and hopefully will have seen doctors today who will have acted on the possible gangrene. It is obviously very important that his vascular system is working and my feeling is that this is the priority at the moment so he is in the right place (today anyway) - do let us know how it has gone. As always, we continue to think of you and Bill and sent lots of love and strength.

Deb

X

[laura]

oh jools, what a bad time you are both having! it seems nothing but bad news after bad news, for everyone on here, i know this isnt a walk in the park, but there really seems no let up for anyone, sincerly hope bill soon feels brighter, and you feel happier.

my love and best wishes to you and bill, and to all my friends on here i wish you peace and strength love laura xxxx

ps i had a much looked forward to, massage today at home, ahhh me time!!! hmmmph, my daughter called in to leave her dog with us for the night, accompanied by her son of 17,

[me laying face down with very little on, not a pretty site!!!] they had conversation with bri, kissed me goodbye,, the fone went, was the dr about my friend wendy she not good today, i talked to him whilst being massaged! then my other neighbours husband came in to ask me what was happening about wendy, cos he thought she was not looking good!!!

jess the massauer said "best if we stop now cos you wont get much benefit from this!!!"

oh well such is life, ive booked one for nxt wk and not telling anyone lol nite nite all xxxx

[susikus]

How is Bill today? I hope you had some better news and help yesterday Jools. Let us know when you can. We're going for second chemo today - right behind you!

lots of love, Sue

[yorkypaul]

Hi Jools. I hope that the hospital get to grips with the extra problems Bill is having at the moment. Do let us know how today goes for you both. You are in my thoughts and prayers.

Hugs, Paul

[Jool2504]

Hi, thanks for your posts it's much appreciated.

Side effects from Wednesday chemo have started he feels very sick so got him more anti sick meds prescribed.

He seems better in himself said the Drs mentioned having toe amputated but its nowhere in his notes. Being taken off anti depressants as making him too sleepy in the day & reacting with sleeping pills.

His toes look better apart from one with black end. Specialist nurse thinks they should leave it & it'll probably drop off. Exactly what happened to his wife.

My friend came yesterday but has gone now, great to see her she's looking after things at my home, which is great.

[susikus]

I hope he is feeling better soon Jools - has it been the same pattern as the first time? Or maybe it's too soon to see a pattern. Pete had his second chemo this afternoon and so far is OK, but it's far too soon to say really. We have used much stronger anti-emetics this time and he had to have a reduced dose as he has jaundice now. Seeing the consultant again on wednesday. It feels that this horrid disease has always got something else to shock you with! Hugs to you and Bill, love Sue x

[yorkypaul]

I hope the anti sickness meds kick in soon. Apart from the horrible feeling, nausea and vomiting do make you very tired. Glad things are being looked after back home. At least that's one less thing to worry about.

Hope you both have a good night's sleep.

Hugs, Paul

[Jool2504]

Hi everyone,

Bills still in hospital, changing him from heprin to worfrin over next few days. The end of his toe is being left to drop off. Chemist been cancelled this week to let meds settle in. Has a blockage in his right leg. Oncology again next Monday. I'm at hospital usually 12 hours a day. Don't want to miss a minute with him

Hope everyone else & their lived ones are doing ok?

[DRAD3]

Hi Jool - so sorry to hear how things are with Bill. This must be so worrying for you and exhausting with not wanting to leave the hospital. Sending you love and hoping that things improve soon.

Deb

x

[susikus]

Good that the DVT has been diagnosed and that anticoagulants are going in. So glad that you can spend 12 hours a day with Bill - it must feel very strange (and horrid) coming home without him. Hugs Jools, you are doing brilliantly, love Sue xxx

[Jool2504]

Hi everyone,

We have had a busy week both whilst Bill was in hospital till Tuesday and since we got back home. Not impressed with the hospital, they told him at 8am he could go home, at 3pm he is was such a state they let him leave, his meds had to be collected after 7pm! With all this going on they didn't give him his lunchtime pills so his bowels are in a mess again.

Wednesday we got a call from the Dr saying he doesn't want Bill on warfarine as it has an effect on his liver, and with Bill chemo and PC in his liver we'd never get the levels right, so he just on the injections, which I am giving him each evening.

Its nacrosis in his toes, his foot is now dressed and bandaged up to just below his knee. He can get around on it. We are having a lighter wheelchair as I am struggling with the one my father has loaned us.

Been trying to get his bowels back to something he can cope with so now back on the movacol, lactulose and senna.

District nurse coming in twice a week to redress and access his toes. Oncology again on Monday hope they put him back on Chemo, Consultant doesn't know about the warfarine yet!!

Bath lift has arrived, its cool (I'm a gadget fan) not used it yet.

Family dinner tomorrow, at Bills favourite restaurant TGI Fridays. Trying to keep him as rested as possible prior to lunch.

Hope everyone else is ok, I'm not very good with names, but thanks for your support.

Jools & Bill

[susikus]

So glad Bill is home again. I am impressed at the plan to go to TGIF. We love going there too but Pete could no more eat a meal than fly to the moon at the moment! One day maybe...

Am guessing you're giving clexane injections - so are we!Good luck with oncology on Monday, hope they can restart chemo soon for Bill. Ours is currently stopped through jaundice - if it's not one thing, it's another...

love to you both

Sue, xxx

[yorkypaul]

Hey Jools. Hope you have a great family time at TGIF!! Keep pushing if things at the hospital are not what you are wanting. I find that firm, polite pressure works well. Ask lots of questions too. Write things down when you have a consultation.

Got to rush. Drove back home last night to catch up on a few hours work today and am now hitting the road back up there till Sunday night or Monday morning. Struggle to know what day it is sometimes! I bet you are the same!

Thinking of both you and Bill.

Hugs

Paul

[DRAD3]

Hi Jools

So much going on for you and Bill but it sounds like you are an amazing circus ring master and getting it running extremely smoothly (hospital notwithstanding - what's new?!) You sound like an amazing lady. I do hope you are enjoying your TGI-Sunday and that you have some fun playing with the new bath lift! Love to you and Bill.

Keep us posted and keep well.

Deb

x