Not the best weekend!

[karen17]

Just as we were looking forward to the sunny weekend it all went downhill. I woke up at 1am saturday morning thinking Bob had left the elctric blanket on. Felt like a furnace in the bed! Furnace turned out to be Bob with a raging pyrexia. A quick call to the emergency oncology team and then after dragging a very disgruntled hubbie from bed plus a grumpy son cos I'd been drinking wine all night ( the shame! ) we had to suffer sitting in A and E with all the drunkards from the clubs! Quite entertaining though! Finally admitted around 5am and commenced IV fluids and antibiotics. He was really dehydrated but not sure why and had picked up a cold a week ago. So 1 hour of sleep for me when I left to have a quick shower and rest then back to be with him. Thrown out for 2 hours between visiting so had to go into the city and buy 2 pairs of shoes to cheer myself up! Poor Bob had no sleep again last night as they decided at 11pm that he was moving wards but didnt move him till 5am. Anyway the fluids and antibiotics have done the world of good and I have now brought him home where he is looking forward to the sunday roast I have been slaving at since we got in. Thank god its back to work tomorrow for a rest lol.

Hope everyone else enjoyed the sunshine xxx

[Cathy]

Hi Karen

I'm really sorry to hear you had such a fraught weekend and that Bob was poorly. I remember you saying he was full of cold so well done for dragging him to A&E when you got worried. It sounds as if he is on the mend nicely now. And you've got your new shoes to look forward to as well.

Enjoy your roast

Xx

[J_T]

Oh blimey, poor Bob Fancy having to sit in A&E for ages and feeling ropy. Bit mean moving him at that time in the morning too, not that you get any sleep in hospital, its not a place for the sick! Glad to hear he now back home where he belongs and hope he's soon feeling a lot better. I bet you're exhausted too!

Ray's last few days haven't been marvellous. He took a tray into the kitchen yesterday only to have his leg go under him at the sink and he banged his ribs which are quite sore but no bruising so should be okay. He's still very tired on day 12 an we're reviewing whether the extra steroids have actually been any use!

Gosh, what a treadmill we're on! On we all go.

Best wishes Karen and Bob

Julia x

[Cathy]

Hi Julia

Sorry to hear about Ray. I wonder..... a similar thing happened to Jonathan earlier this week. His legs didn't go but he stood up and felt very weak. We are now monitoring his blood sugar this weekend and he has a appointment with a nurse tomorrow. Has Ray had his blood sugar checked recently? We has assumed our hospital would do it as a matter of course each time but it seems they never have!

Bonkers.

It would definitely be worth doing if not as the steroids can push it up seemingly. You can't win!!

All the best to you and Ray

Cathy Xx

[J_T]

Thanks Cathy, I think I'll see if the nurse will add to his normal bloods on Tuesday.

[Cathy]

Jonathan's was definitely blood sugar related so I would not be remotely surprised if Ray's wasn't as well.

Jonathan has reduced the steroids as well just to see what effect that has. It really is a fine line with these darned things trying to find a balance that suits. He's still coming off more slowly but taking less at the start so a reduction overall. I'll let you know if that works better.

[Jwilson]

Karen, your post about your weekend made me laugh! You sound like me, the wine and the shopping in the middle of the awfulness! What are we like. In the last month my husband,Bill was in hospital for ten days and has now been back home for two weeks. Eh.....two pairs of shoes, two dresses, a swimsuit, underwear, makeup, lipstick....I never come home without a bag. Also there are lots of Sauvignon blanc bottles empty in my garage! Bill had a bypass operation done, some good days but some terrible nights of pain. He can't seem to get control of it at all. Any suggestions?

June

[karen17]

Hi June,

Hope you've seen all the posts with some suggestions re pain relief from your new forum family and pc nurses and hope some will help.

You sound like you enjoy your shopping and wine too! Sometimes it's just got to be done! Guess the summer sales will be coming up soon - whey hey!!!

Karen xx

[Jwilson]

Hello Karen, we live in Northern Ireland and honestly have nothing but praise for the treatment and care here. Some people seem to have had to ask for drugs and are not getting much support at all. Yesterday I rang the GP first thing. Within an hour a district nurse called and took bloods from Bill. Then the GP came, adjusted all the pain meds to a higher dosage, prescribed sleeping tablets if Bill felt he needed them plus a pill called duloxetine to be taken at six every evening. Apparently it's sometimes prescribed as an anti depressant but in cancer patients it helps with the pain relief?

Today so far the GP rang to ask how Bill had been overnight then we had a call from a Marie Curie nurse, she is setting up a palliative care team of local nurses and so on......brilliant service. Also have you heard of a form called IS1500? Our Dr. Is filling one in for us and sending it off. Apparently we can get financial help right away unlike attendance allowance which takes months. We know nothing about this kind of thing!

Back soon, more visitors calling just now

June

[Cathy]

Hi June

Apologies for butting in to your conversation .

The form you refer to is to fast track DLA (disability living allowance) or, actually, thinking about it more likely to be PIP (personal independance payment which has replaced DLA from April) - we had the same and it worked a treat. Full DLA and they assessed Jonathan within a week or so.

It's great you are having such fantastic service over there. It is so patchy in places (ours is a little where I live). It must really give you confidence.

All the best to you and to Bill.

xx

PS: I was tickled by your recycling in the garage when Bill came home fro hospital

[Jwilson]

Hi Kathy, flip isn't this all desperate......northern Irish for going through a bad time! Our daughter is getting married on July 6 th.......I need her dad on his feet! Of course his illness is throwing a massive shadow over everything but I am trying not to let it win. I just put a positive slant on it all by saying well....he will be there, three weeks from now. Perhaps if the wedding was next December...who knows. This forum thing is wonderful you just know you are not on your own with it all. The minute I signed up I got an email from one of the nurses who appear to run the forum. Fantastic isn't it? They give you loads of advice and you definitely feel that there is so much help and support out there! Thank you for posting to me.

Yours June with a glass of wine......I think of it as my medication x

[Jwilson]

I apologize its Cathy not with a K!

[Jwilson]

Karen, today's purchases......another swimsuit from M and S sale plus sunglasses which are also reading glasses! I can read nothing now without 2.5 lenses! Not too bad? Didn't spend that much!

June!

[karen17]

June I have also hit the city today with mum in tow to cheer myself up. Was not cheered by the fact my waistline appears to be expanding! This is due to all the calorific foods I keep baking for Bob and then eating myself....well it would be rude not to!

We have had another overnight stay in hospital due to a high temperature on monday night but today he has returned to work. I have heard of the forms you talked about but as Bob refuses to give in to this we have not filled any in. He is self employed so it is a bit of a worry.

Pleased to hear that you have got things rolling and found people who help. Are you all prepared for your daughters wedding?

Karen xx

[Jwilson]

The wedding....July 6th....I just want her dad to be there. Today I don't know what happened, bill was lethargic all day, then he was sick and then I panic that the pain relief has been puked up. He has taken some more stuff and I have drunk a bottle of villa Maria, my medication of choice! Isn't this just the worst thing that ever happened to you? I bounce along ok and then suddenly I am bawling my eyes out with the horror of it all. Loving the fact that I can chat on line with people feeling the same as me. We have not had the burning up thing yet. Bill just has horrific clamp like pain at night and now today, sickness. We will not be having marks and Spencer's wraps any day soon!

June x

[Cathy]

Hi June

I'm sorry Bill has been poorly. I hope he feels better today.

I know what you mean re bouncing along. Life feels very surreal (I liken it to living in a bubble) but when things take a (hopefully temporary) downturn it is very frightening.

It's lovely that you have such a lovely thing to look forward to and we all hope that Bill will be well enough to do all the Dad at a wedding stuff (including Dad dancing!!)

Is he managing to keep his pain medication down today?

xx

[J_T]

Karen, sorry to hear Bob was hospitalised again! How he continues to work I don't know, all power to him!

June, also sorry to hear about Bill's pain. Hope he now feeling okay.

Keep on keeping on ladies!

Julia x

[Cathy]

Sorry Karen, I missed your sentence about Bob. What a DRAG! You'd said he was a bit peaky last week.

I understand how Bob feels re the DLA/PIP. He IS entitled to it though even if he is working as it's not means tested and if he is self employed it would be a little bit of money to fall back on for those odd trips to hospital.

Jonathan is also self employed but his type of work means he doesn't feel he can work at the moment when he has been sooooo fatigued (so for us the extra money is fab and welcomed).

As Julia said, keep on keeping on...

xx