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

Good luck for tomorrow Fay

last nights party went well with all of us having a few drinks. It was a bit snowy on the way over but by the time we had finished drinking wine and champers it was even more snowy, never mind eh. Needless to say this morning was a bit of a slow start as we all slowly surfaced. Have not done too much today, Kate came back from her sleep over happy and relaxed which was great to see. Still no sign of sky working properly so still watching limited TV.  Feeling good still and ready for work tomorrow. Had a bit of a heart to heart with Matt, my oldest stepson who is going through a few personal problems at the moment but is also terrified at what is happening to me. The little bugger nearly had me in tears as we hugged and tears were streaming down his face. I am so, so lucky to have a wonderful caring family and  I love them all to bits. I am never alone on this journey and I know I will never be forgotten, which is nice to know as well.

Hello, Sir Bob, it'd be hard to forget someone as determined as you......in fact, pretty impossible, I'd say.....glad Kate was happy.....my love and hugs to you all, hope work went ok for you

Not a bad day at work today but really struggled to get to the end of the day. Im feeling at the moment im not sure how much longer I can work for, but hopefully it will get better again. I had a really good nights sleep and felt OK when I went to work but by threeish I was done for. Its good to be home and really good that im off  work tomorrow.  I am getting my eyes tested in the morning to try and improve things. Since the brain mets, my eyes have got worse and I struggle at times.

I slept really well again last night, in fact, probably too well. Normally I hear our sons go to work and hear Mollie running about and in to our room but not a thing this morning, it almost unnerved me a bit. Its like not being in control totally if that makes sense. Anyway after I did manage to prise my eyes open we took Kate to school and then popped in to Cambridge to get my eyes tested. They havnt altered too much so that proves it is the cancer causing my sight problems. As my last set of glasses were wrecked when I collapsed out side the Chemist last year I did order a new pair. "keep it cheap" I said as I will only loose them. They also did a two for one offer which means I know have two pairs to loose. After a coffee we then came home and I decided to test my patience levels by speaking to sky about our still not working tv package. I did test it  and it did not work very well. I nearly lost it when all they kept saying was leave it 24 hours and try again. I told them that if our company gave the same service as they did then we would be out  of business. I ask you. Another week of Sutent  over with, (my Sutent week starts on Wednesdays). Have any other Sutent users noticed their patience wears rather thin, rather quickly. Not much else planned for today,  My twin sister is popping over soon for a visit and then Kate will be home so that will be the end of peace and quiet. But I wouldn't want it any other way. My time for peace and quiet  will come soon enough lol.

Hmmm, the eye test was a double edged sword then, Bob.....I too slept all through last night, again, I wondered why when I woke......maybe since I now know what Caz's bloods are doing and that I'll be going up to keep an eye on her tomorrow? Well, we'll see.....

You are very brave tackling Sky, I know from experience they seem to think they have an answer for it all, including the appalling service, or lack of it! 

Hope the rest of your day goes well even if it's busy.....love and hugs to you all

Yes to the patience Bob, I think it's based on us not being in full control and able to do the things we want to do with normal levels of energy, Sutent robs us of so much in life,  but as it's fighting the cancer battle we have to weigh up the odds. I get really frustrated with losing my breath whilst on sutent and wanting to push the boundaries,  but my body lets me down although my brain is saying go on do it!

I'm halfway through cycle 8 now and the usual side effects are starting to kick in, the yellow skin tinge, the tiredness, the aching joints the breathlessness, Onc knows all about the side effects but still maintain the 50mg dose as it's working. So I keep smiling and pace myself even more! I plan treats for myself and family throughout the cycle so we have little trips to look forward to, next week we're off to see Motown dancin in the streets, and although I may not be jiving in the aisles I'll be doing my fair share of clapping and singing along!

Take care Jackie xx

Hi Bob, this my ist time posting but have followed your story from beginning with my beloved husband Gordon who you gave inspiration to, he fought so bravely with his kidney cancer, but sadly lost his fight on Dec 7th,we are missing him so much but I still read your thread every day and admire you and the family so much.Gordon was just turned 68 and had it for 3years had major surgery 2007 kidney removed and openheart surgery as the tumour had grown into the heart, but with his usual courage he was bck playing a full round of golf in 9weeks and continued til sept 2008 when mets found in kidney bed ,tried interferon no luck ,and then sutent which NHS funded in Glasgow ,unfortunately he sffered major blood clots everytime he took it after 2weeks.In July he was admitted to hospice for end of life care and gave him only about 3 days and 5weeks later he walked out carrying his case and was home until Oct and blood counts kept dropping and generally think body had enough ,but he never once complained during te 3 years took eveything they threw at him, gor holidays home and abroad for a while ,now he is at peace and he would want me to thank you for all the encouragement , and like us have a wonderful family which makes a big difference ,hope you did,nt mind me posting thank you ,I will still be following you and know you still have a great spirit within you.  Laurynann

Hi Laurynmann and many thanks for your posting. I am so sorry you lost Gordon but privileged to have helped in some small way through his journey. He is indeed at peace now and my thoughts are with you all as you come to terms with your loss

Bob 

Another day at work done and I have had a really busy day but was really glad to get home. After dropping Kate off at school I was dropped off at work and soon got in to the swing of things. This afternoon I went back to one of my old schools to look at a job and that felt a bit strange. The school had not changed hardly at all and I could almost picture myself back their and you could not help but wonder what was in store for all the youngsters there later on in life. Certainly when I was there I would never have guessed I would be terminally ill at 49 and only working part time.My appetite has been poor today and I have also struggled a bit to drink enough. I felt a bit wobbly after finishing work so am glad to be sitting down, drinking coffee and stuffing my face on midget gems, hardly a wholesome meal but its better than nothing. I am again looking forward to my day off tomorrow and hope I fair a tad better. 

Midget Gems????????? has your visit to school sent you back into memory food too, Bob? (must admit to liking sherbet fountains!)

Glad you managed work, just go steady though......love and hugs to you all