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

My favourite sweeties were 'dolly mixtures'...........Bob - just take care and rest if you can.............Love and ((((hugs))))) to you and your family  Dot xxxxxxxxxxxx

Hi Bob, Jackie and Mooney,

Well Bob i went to the hospital on Mon and dident see my usual consultant but one of his registrars, he was very pleased with how well i looked and my blood count was really good for the first time in years so i mentioned what you had said about taking Sutent again but 4 times a day, he said he would have to speak to the proff he came back saying" no " if you take it again it will make you too ill and now they seem to think it also causes me to bleed inside thus causing my red blood count to get so low, (News to me ) . He said its just a matter of getting the steroids at the right dose, so they dropped it to 1, 2mg a day.He also said i would not have any other scans unless i felt poorly? ive got a 12cm kidney tumour i dont feel it so how im supose to know whats going on inside me i dont know. I have to go back in a month but im trying to get intouch with proffs right hand girl (dont know her proper  title) as im not very happy at all. One day you get told one thing and another something else,this is my life and im grasping at straws so i should be told exactly how Sutent will make me ill. I said let me try for 1 month and if im still poorly ill stop but at least let me try.

My Mcmillan nurse came in the afternoon and she said it was unsatisfactory how they had left me confused, next time i go ill have to insist i see the regular consultant who told me id still have all the checks and if i wanted to go back on Sutent i could. Sorry for ranting a bit but its so frustrating not being able to get straight answers. Hope you are all well Love Fay.X

PS. What do you think Bob ?

Hi Fay

I think you will already know my answer, If you want to go for it, then you must push for it. As you say it is your life and you surely have a say in it. I know at my last meeting with my Oncologist he was talking about reducing my Sutent dose. I will not be taking that lying down.  Also according to my Oncologist you can temp reduse dose and then if cancer grows again it can be raised again. So another option to discuss. I would definitely try and see your own Oncologist and try and get an answer you are happier with.  I do know at some point you do have to give in to their  judgement but I do not feel you and I have reached that point yet.  KEEP FIGHTING GIRL.. I seem to be getting a lot of cramp lately, not sure what that is all about. It stars mainly in my right leg but tonight also got it bad in my left foot and right hand, what a state eh. I have to keep jumping up, much to everybody elses amusement and astonishment and trying to stretch the muscles. I feel a bit wobbly still tonight and am definitely struggling at work more than ever but the ever optimistic me is still hoping that things will improve..

here I am, nearly three in the morning and cannot sleep again. Tried to go to bet at half ten but felt unwell generally and also sick when lying down. \i have spent the last two hours on "chat" talking to some great people. its amazing how the table turns and how you end up giving each other advice, and its also a great laugh. If you find my diary Beano and decide to leave a comment, no swearing, im having this printed for my daughter lol. Right, time to  try and sleep again, nite all.

i dont know bob...only nearly 3am and your off to bed allready......

i made the mistake to going to bed early....and now im wide awake....arghh. 

hope your doing as good as possible and you have lots of good days ...course you will bob...... in the months and years ahead..

all the best to you and your family...

Hey Bob, sincerely hope you got to sleep after all of that..... You'll see from the time I have too much on my mind to sleep also....but that's  for another time.

You'll never believe this, but today Jim bought midget gems for us  (my mam, the source of my sleeplessnes), and I, at the hospital today, and they were fab! Proper tasting  midget gems, not your common or garden synthetic mush but the aromatic scrumptious taste of old, particularly the black ones, mmmmmm! 

May I just say to Jackie, I have a friend going through what you and Bob  are, he too is on his 8th cycle,  (first time he could endure  only 3) looking not a million dollars (we call him 'mellow yellow'.....quite rightly:-))  admittedly, but he's oh so positive, and we (Tony's friends and I, he's a lurking member) take our hats off to you both. Jackie, you're wonderful, your spirit is tremendous and you shine like the star you are. X

Sweetiepie also, do you know what? You're so incredibly right. This is Your Life they are dealing with, you deserve every chance you can have.  If they cant't/won't help you, go to St Elsewhere......there will always be someone willing to listen to you somewhere/else......Good luck, X

Bob, my friend, may you feel better this morning when you wake from a sleep which I hope made the world of difference to you. Love to Linda, Kate, the boys and Katie.  

Ang xxxxxx

Laurynann, so sorry to hear about your lovely husband George, he obviously put up a determined fight to stay with you as long as he could. I know the Beatson and Western well, if that is, in fact, where he attended. I am so glad you take inspiration from Our Bob still. I hope you find peace and comfort, in time, that you so deserve. X

Ang xxxxx

good afternoon all , well i have only recently surfaced after my poor night but do feel a lot better now. I went back to bed about three and briefly awoke when Linda took Kate to school. At that stage I put on the tv to watch the news and promptly fell asleep and missed it. I am now downstairs and as my taste buds are all over the place I just had some savoury rice which always goes down well. The only problem seems to be my hand to mouth co-ordination as I went to take a spoonful and managed to shoot the whole lot over my shoulder. Lets hope that doesn't happen too often, that will be a good party trick. Today we have a review with Kate's therapist which will be a good chance to see how things are going. Anyway I suppose id better go and get showered and dressed or else it wontbe worth getting up at all. Thanks to all who spoke to me on chat last night. its in the middle of the night when you cannot sleep that all the nasty thoughts come flooding in. its so good to talk to each other and help dispel those fears. 

Hi Bob,

Thank you for your wise words, i will keep up the fight as best i can. I also get cramp in my feet and legs and i take Quinine for it. I  will let you know how things are after i have spoke to someone at Christies.

Take Care and love to the family. Fay X

Hi bob

my momhas kidney cancer she's had the kidney out but she also has bone mets in her spine and also in her elbow she's had two lots of radiotherpy but in a 2-3 wks she will start sutent, can you tell me anything about this drug please we are all so worried what kind of side effects do you have ?

regards

lisa