A bit of a worry....

[Cathy]

Hi all

Thank you for your kind replies

Well, he's home! The hospital could find no infection and think he felt so poorly because of the chemo and with his blood sugar levels being erratic. They also said they think his diabetes has been caused by the steroids (you can't win) and that when they come out of his system that he is unlikely to need insulin. So that was good news. He saw his diabetes nurse again and I've been told that they will be adjusting his medication with any more steroids.

Jonathan himself still feels totally wiped out tho is a little better today - this is definitely the worst fatigue he's had and yesterday was saying "no more". We'll see. He could do with a break and we've got our 2 weeks holiday still firmly on the horizon so hopefully they can organise things so he can go away without feeling poorly and relax.

You're right Bee re juggling work and home life. For me at times that has been the most stressful thing. The mortgage still needs to be paid tho l've managed to get an arrangement to work from home 1 day per week (Karen-is that mobile working?) which is great Jonathan's work was always ad hoc as he is an actor - currently "resting".

That stupid wheelchair. Falling out of it so dramatically (helped by me shrieking "S**T!" In a very unladylike fashion) was Jonathan's highlight of the whole experience (Julia - you should try it). It was a nightmare to manoeuvre which meant that he was parked in some very peculiar positions as we moved thru the various stages of A&E - largely getting in other people's way or facing in odd/inappropriate directions. Actually.. now I come to think about it.... he declined my offer of finding a wheelchair when I picked him up again. Hmm.

Hope Bob is feeling better today Karen and you didn't have another night of being entertained by drunk people.

Hope you all have lovely restful weekends.

Xx

[J_T]

glad to hear Jonathan is safely home, not so glad to hear he is still very fatigued

Hoping he picks up a bit over the next couple of days. Hope the blood sugar problems sort themselves out. I'll think we'll give the extra steroids a miss next time!

Those hospital wheelchairs! The first one I tried to wheel him went from left to right in a zig zag until I turned it around and pulled backwards, that seemed to work. The next one on another day I pulled backwards and it didn't want to know so I turned it round and hey presto off we went! Who designs these contraptions? People who don't use them obviously!

Best wishes to everyone x

[Bee]

Hi Cathy, I have to confess when you said he is an actor and describing the falling out of the wheelchairs "scene" , it did make me smile. At least he saw the funny side too!

You have to laugh I guess, in order to maintain normality, it is so hard isn't it! Three days after our diagnosis I watched my son pla rugby as we always do every week and it was all normal, except it wasn't, I just wanted to scream at the world that nothing was normal anymore!

Hope you have managed to relax a little this afternoon x

Edited June 8, 2013 by Bee

[karen17]

So pleased to hear Jonathons home. You get no rest in hospital so hopefully he will pick up now he's home. Keep looking forward and planning holidays.

We managed not to spend another friday evening in a and e with the drunks. We had family to stay for the weekend and have spent today on the lovely north norfolk coast. Now back to watch BGT!

[Cathy]

Hi all

Well, yesterday was my first taste of being a proper full time carer. Jonathan stayed in bed all day and I was run ragged by the end of it. All those stairs!! Good for my bum I guess.....

He is still wiped out today and wondering how he will manage to get to the oncologists appointment. Ive said we'll cross that bridge when we come to it tho am not sure what the answer will be. Hopefully he will feel better later and has agreed to come out with me to the shop around the corner and get him something to eat that he fancies as an experiment.

I'm mystified myself. I am sure it must be related to blood sugar but I don't understand why he is so wiped out now he's started to control it. He actually seems better when it is higher. I'm going to ring the diabetes nurse tomorrow again for a chat.

It's odd finding humour at dark times... Maybe it's about staying sane? The day he was diagnosed just before Christmas we'd so not anticipated bad news I'd gone to a meeting in another town for work and so only got the terrible news on the train on the way home. Of course, the signal kept cutting out every 30 secs as he was telling me then I couldn't get back to him as he hadn't realised I'd been cut off so was still talking to me on his phone. That happened time and time again. I don't need to describe to any of you how awful that felt.

Anyhow, earlier that day before that conversation I'd planned to pop to our local supermarket (Asda) when I got home for a bag of salad and had had this mantra in my head all day "must go to Asda, must go to Asda". When I finally got home, in shock, numb and dazed, I still had the same mantra so went to Asda. Afterwards, home again, I discovered I hadn't bought the bag of salad but an enormous jar of Quality Street that had caught my eye as it was on special offer. I don't even really eat Quality Street (apart from the purple ones). They're still on my kitchen shelf to this day and I point them out to friends. Anyhow, I mention that as it tickled me despite it being I think the worst day of my life.

I hope you don't all think I am weird now..........

Enjoy your Sunday's everyone. Karen, glad you managed to avoid the drunks and Bob was ok.

Xxx

[J_T]

Hi Cathy, when did Jonathan have his last cycle? He sounds very much like Ray gets, usually on day 6 for us. Looks like he might have to risk another ride on Cathy's wacky races to see the onc!

I know what you mean about the stairs! As you say, its good for the bum AND the waistline as Ray is eating calorific foods and I'm joining him, so if it wasn't for running about I'd be like the side of a house by now! My admiration has grown for carers of all types, it really is quite tiring.

Nah! you're not weird, well not very ! Chuck us a purple one will ya?

Julia x

[Cathy]

Hiya

He had his last on 30 May, so a week last Thursday. Dip started on Monday/Tues. He's still not right. He can walk only a few steps at a time so I have a friend on Jonathan duty today to help get him to the Oncs where I'll meet him (and the diabetes nurse this morning). His arms and legs have gone so thin as well it makes me so sad. We were told it was steroids but I might raise Creon's today - I've seen the other thread.

Cathy's wacky races indeed... (LOL)

OMG - calorific foods. I've gone up a dress size I think this year with eating with Jonathan. I don't want to put him off if he suggests we have a takeaway pizza.

Purple one on the way!!

xx

[J_T]

Hi Cathy, good luck with the scan results, it is today isn't it?

Jonathan is due a break and he will start to feel better, get his appetite back and put some llbs on when he does!

Fingers crossed he gets to meeting to hear some good news

Julia x

[Cathy]

Hiya

Thank you for that and it certainly is.

I don't wish to speak too soon but it sounds like he might be feeling a little bit better. My friend has managed to get him successfully to the first appointment and is optimistic about reaching the second for the scan results.

So here's hoping...........!

xx

[Bee]

Hi, everything crossed for results!

As for dress size, think I have gained what Chris has lost!!

bee

[J_T]

Hi Cathy, hope you were right and that Jonathan has continued to feel a bit better?

Bloods for us today, including glucose test! Although Ray has been feeling quite good on his week off. Back to it tomorrow, all being well.

Julia x

[Cathy]

Hiya

I started posting a little earier and then got called away on the phone by Jonathan's keyworker.

Well, the scan results are in and we're stable!! The last time we got the same I felt really disappointed as we had so wanted a reduction but with Jonathan's A&E admittance last week, diagnosis of diabetes and just feeling so wiped out we were both privately feeling very scared. So we are both relieved and delighted.

Going forward, as he was so wiped out last time we are now having a little break to allow Jonathan time off to get back to his old self and when he does, will start again (or if he developes symptoms in the meantime). He is starting to perk up again now but wouldn't have coped with another blast so soon I don't think. Previously I would have worred about having a break but he really had no quality of life this last week so I am glad that he is.

We will go back for regular checks (next appointment is in 2 weeks) and then we go on holiday (HURRAAHH!!) so maybe restart after then.

Julia - I'm glad Ray is feeling better. I think the feeling with us and steroids is that Jonathan may be extra sensitive to them which some people can be so they may not have the effect on Ray that they did on Jonathan. He was offered them on a lower dose for longer whilst he was on his break but he declined. Good luck for his treatment later this week and hope it goes well.

So, phew!!!! A break, a well earned rest and then may battle commence again!

Hope all are well..

Cathy xx

[KATB]

Cathy that's great! All sounds positive and a break definitely sounds like what you both need - enjoy!

K

x

[J_T]

Cathy, so pleased to hear that everything remains stable - phew!

I agree entirely with your thoughts re having a break. You do tend to wobble a bit when things are interrupted but Ray has benefited so much from his 'rest'. I don't see the point of continuing with treatment and being bed bound and unable to *anything*!

Enjoy your break, both of you!

Julia x

[karen17]

Cathy, great news!!! I was so worried you hadnt posted that I was on here late last night and this morning. Phew what a relief. Go and enjoy a much needed holiday now.

Ps - I'm pleased in some sort of sick way that most of you seem to be gaining weight too and it's not only me! When we go on holiday I dont think my clothes will fit me and the bikini's certainly out. Not a good look lol

[Cathy]

Aw thanks guys.

We go away at the beginning of July for 2 weeks but I'll be thinking of you over there (I might even be able to post - not sure yet about the wifi where we are going).

Karen - the reason I didn't post last night I'm ashamed to say is that to celebrate and also feeling a little better Jonathan decided to have a Magners in the back garden (first alcohol since his dip last week). I, of couse, joined him with a glass (or 3) of wine and before I knew it was a little too indisposed . Safest not to post on forums I think when a soz'd. Thanx for looking out for me, that was really sweet.

Actually, just thinking about it.. quite fancy another one!

Have a nice evening all

xxx

[Sueba]

Hi Cathy

Brilliant news,it's great to hear some good news on here!

Glad you're managing to get away,even a couple of weeks without the chemo in his system will make such a difference.

We've also booked a week away in August for the 5 of us,Karen your comment about the bikini made me laugh,maybe we need to start a carers slimming club,all this sitting around during chemo (and getting things from the vending machine!)takes its toll

Have a good evening

Sue

Xx

[Bee]

Hi cathy, really delighted that you have good news and now a well earned break, youcan relax a bit and count down the days to the sunshine!

Karen, I was also relieved to hear its not just me that is gaining pounds!! Comfort eating, a close friend baking weekly to fatten chris up, and dietician advice "go and stuff your face", (yes really) is all working, don't actually think I was meant to take the advice but we are in this together aren't we??!

bee

[Cathy]

Hiya

Thank you all

Maybe, as it DOES seem like we're all in this together we could ask the moderators to start a new "Carers fat club" forum.

We can all swap tips on avoiding vending machines, suggest good buttock exercises sitting in waiting rooms, stairs, choosing the "light option", and, a personal favourite, avoiding that all tempting glass of wine..... Or 2 ... Or 3 (the shame...)

Oh, and chocolate.

Suspect too late for my holiday however.... Hey ho.

Xx

[PCUK Nurse Jeni]

Haha! Very funny you lot!

Cathy - so pleased for Jonathan! Great news! Go and enjoy the holiday! And don't worry now about the pounds - they will just gain some friends on holiday!

You are all a fantastic support to one another, and so nice to hear some funny banter too. We will think about the "Carers Fat Club" forum!! How funny! I laughed at Bee - not sure the advice was for you too Bee, but hey! As you say, you would not like to be feeling left out!

Kind regards to all,

Jeni.

[Cathy]

Thanks Jeni

Well, I am now going away this weekend with a few maxi dresses and a spray tan (slimming tip!!! ) with the view that Jonathan will be too startled at my colour>> to notice any extra pounds creeping on.

Everyone - Also, we have had delivered recently his pic line protector which works a treat in the shower - his dressing remains bone dry (basically a rubber sleeve with a pump attached). I'll give feedback and let you all know if it works as well in the pool as it is says it does. I hope it does as he loves swimming. His oncologist was so excited when we told him he said that they might use some charity money they have at the hospital to fund a few for patients which is great.

Hope you're all well.

Lots of love

Cathy xx

[J_T]

Hi Cathy

Have a fabulous holiday! Who cares about extra poundage (unless you have to pay excess ) and your colour? Just enjoy. Glad to hear Jonathan will be able to swim without having to worry about his picc.

Great that the hospital is thinking of buying some too

Relax and enjoy!

Julia x

[karen17]

Hi Cathy,

Hope you both have a fantastic holiday and like Julia says don't worry about the excess baggage although if you flying with either Ryanair or Easyjet they are pretty hot on it lol. Maxi dresses sound a great idea( note to self - shopping trip this weekend ). Hope you not too tango'd hee hee.

Happy holidays xxx

[Slewis7313]

Hope you both have a fantastic holiday... We are enjoying ours!

Steve

Xx

[karen17]

Thank you Steve. Great to hear you are enjoying your holiday. Can't remember where you said you were going and can't find the thread but wherever you are put your feet up, relax, put this crap to the back of your mind and enjoy xx