BOB JK My diary of kidney cancer (to be continued)

Thanks for that info Bob i am having the same problem i feel really tired and then i wake up during the night i am feeling so tired right now i am off too bed in a min, Hope i can at least sleep for a few hours, Thanks again Bob Take care and sleep well.

Pauline

Hi Bob Jk and Pauline, I too sometimes find that I am tire during the afternoon and wake up at three in the morning. I take my Sutent around 9.oopm each night and go to bed normally around 10.00pm Often I can sleep until 4.30am and I tend to now accept this as the norm, but I must admit, my energy is only good in the mornings. From 2,00pm I now tend to read, rather than fight the tiredness. It is against all my principles as I was brought up as a worker and would normally work a ywelve hour day, so this really goes against the grain. I'm sorry that I have no tips to eradicate the problem. Take care Mario

Bob, glad you rescued Mollie in good time, hope she wasn't too bad! Pork overdose, eh?  hmmmm, could do with some, am trying to think of what to get for dinner right now, been so busy stripping kitchen out that I haven't thought about dinner, you couldn't magic me some over, could you???? hahaha!

Hi Paulene, Mario and Moomy.

I had a good nights sleep after finally dropping off quite late and although I awoke early, I did stay in bed untill 06.30.  I did feel quite rested and after walking Mollie and then having a shower I was ready for work. I have been setting up a remote connection to work so I can work from home if travelling in gets too much. I have even been thinking lately, do I actually want to continue working. I seem to have to drag myself through the day but do feel  sense of reward when I manage it. I do sometimes wonder why I am working still, when I am so ill and time probably is limited. Yes moomy, mollie is much better after a strict diet of chicken and rice. I had rice as well but not for the same reason as mollie, not this time anyway.  Tonight we have been to our councelling session. Kate sees her person and today Linda and I saw ours. Itwas a very usefull meeting talking very frankly about what is going to happen to me later and how we can help Kate prepare for it now. I came home planning to cut the grass but took one look at my colour in the mirror and thought id better not.

Hi Bob

I gave up working on diagnosis,  not realising I would live this long,  but don't regret it one bit. I miss the money but we cope. John needs a knee replacement so took early ill health retirement so we've been together the whole time since shortly after I had recovered from my nephrectomy,  so I consider myself really fortunate that we've had all this time in early retirement together. I do like to keep busy though so I do a bit of voluntary work with Spice my collie at a local hospital as a pets as therapy visitor and get a lot of satisfaction from it. John has many hobbies so he's never bored.

Like most people I get fatigue with the cancer but I try to do all my 'chores' early in the day and then reward myself with a lazy afternoon! walking Spice, reading a book or on the laptop! I make my own birthday and family cards too as a hobby and do what gardening I can, luckily our garden is small!

We holiday a fair bit in the uk though not abroad anymore and make the most of the cheaper deals as we have no young children now. We can visit our two sons more now and spend a lot of time with them.

Keeping busy helps me to stop thinking too much about my future and what it may hold, but I also know that I have to put some plans into action and have started a 'how to' book for John for after I'm gone.

I keep in touch with all my old workmates and they're always telling me how they envy my freetime and how they can't wait to retire.

Sometimes I guess we have to take stock and think about what we want from life, no matter how long or short it may be, I know I do what I feel like doing nowadays and try to give back a little now and then to others less fortunate than me.

I had the most wonderful walk today with Spice and John,  not miles like we used to be doing,  but a good walk just the same, enjoyed the sunshine, the birds, meeting other dog walkers just doing what we wanted to be doing and not having to worry over work anymore.

Whatever choice you make Bob make sure it's what you and your family want and enjoy it!

Jackie x

Bob,

I think you should do what feels right in your heart and mind.

Kay

Thanks Jackie and kay for your replies.

I havnt gone in to work today so we have has a good chance to mull over all the options and at the moment my plan is to carry on working at least untill christmas and then probably drop my hours  and /or work from home. My laptop is being set up as we speak to accomodate this and we both feel this is the best option.  I do enjoy the interaction with work and would miss that side of things. My work have been very supportive so far and im sure will continue to do so. If I gave up work I could take over the bupa privately so that is not a great issue. When I get to the stage where I can no longer function properly or im given a decisive time of life then I will go on long term sick leave.

last night was a bit of a scream, literally. We were sitting in the lounge and I was looking across at linda when I saw this tiny pair of eyes looking out at me from under the sofa she was sitting on. Trying not to alarm Linda, but managing to do that anyway I told her to carefully get of her seat and leave the room and get Justin. Then I told her why and she soon ran out. Justin came down and we spent the best part of an hour chasing this poor little mouse around the room and trying to trap it with Kates butterfly net and a tupperware bowl. Then it ran up the curtain and we had to lift all the chairs and settee before finally cornering it and getting it outside. Thank god Kate slept through all of it and was non the wiser. Linda did laugh at the fact the mouse made me jump which in turn made Justin jump. What an ordeal. Yesterday at work did go a bit easier and today I feel a bit better so hopefully im comming out the other side of the worst part of my Sutent cycle.

Mice! I love them but only when they're caged! or in the wild. We too had an eventful evening-night, I went into the airing cupboard for a clean towel and everything was soaked! our overflow on the main tank in the loft had decided to give up and flood the roof! as it's above the airing cupboard it drained into it! all my towels, bed linen and other clothing is now in piles in the kitchen waiting for the next washload. I estimate about 12 washloads will see it all done :-(

Adding to this my son is coming home today for the weekend prior to flying out of heathrow on Monday for 3wks in Canada and he asked if I'd mind doing a little bit of washing for him when he arrives, of course I said no bring it with you! He washes by hand in his house as he is renovating it all and doesn't possess a machine yet! so it's chinese laundry day or should that be days?

Thank god the sun is shining so the larger stuff is pegged out and the tumble drier has never seen so much washing in months!

These things are sent to try us but on a positive side it does stop me thinking about my other worries.

What did you do with the mouse by the way? lol

Jackie x

A bit of a weird day today. absolutely no energy levels at all. Kate had a friend stay the night so in the morning I managed to stay awake and even cooked them pankakes before kate and her friend went out for the rest of the day. That left myself and Linda to have a bit of a heart to heart. we spoke for a while about the difficult journey ahead and also spoke about each others feelings. I spoke about not being afraid of dying but deperately not wanting to leave linda,kate and the boys and she spoke of being unable to cope at the thought of me not being around any more. we cuddled and watched a bit of a soppy movie before, exausted I slept all afternoon, only waking briefly when Lindas mum and dad popped over although by the time they left I was fast asleep again.  Im on my break od Sutent and last time I was on it my last week on and first week off were the worst and it seems to be following the same pattern again. I am hopefull that as the weeks go on I will find my feet a bit more and cope better than I feel I am at the moment. I sometimes get the feeling that people think im on my last legs and give me that sympathetic, sorry look and I agree I do slip into feeling like that at time untill I remember its the Sutent making me feel so crappy.  I have really struggled this week but I have come through it and live to see another week.

A better day today although I havn,t really done much. We went out to lunch and I managed a good sunday roast but I risked a pud and that made me feel really sick. Today Linda has been sorting out her study and she has receipts and bills dating back to edwardian times, well ok ive exagerated a bit but she has certainly plenty of thinning out to do. We popped to staples and picked up some more boxes and bits and then we both had a good sorting session. She is still sorting now and rubbish box number four is nearly full. I do have a bit more energy today and am planning to go to work tomorrow.  Im not quite as yellow as I was and the bloaty feeling in my face feels better as well. Allin all, not a bad weekend and hope yours was also ok.