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

Merry Christmas bobjk to you and your lovely family,

Much the same as you we wanted to have a family Christmas and that is what we have done. Whole family at my sisters on the day and mum's yesterday. Boxing Day has always been her day to have us all round and feed us up and spoil us rotten! She was definately tired by the end of the day but I know she would have put in as much effort as she could muster and wouldn't care if meant spending the next two days in bed!

I am glad you had a great time my ten year old was the first up at 4.40 couldn't wait to get her hands on her electric guitar! Bob just know that whatever 2010 holds you and your family will be in my thoughts.

Di X

Thanks Di, I also hope 2010 turns out a good year for yourself also. 

Today has not been one of my better days. I have felt tired and sick and also severe pain at all but one of my  operation sites. I'm sure it is a side effect of the Sutent but had forgotten how painful it could become. Also I seem to be getting a lot of pins and needles all over my body but especially both hands and arms. I finally relented and took paracetamol and after two lots it has settled down a fair bit. As I feel a bit sick anyway I thought "what the heck" so have pigged out on quality street all evening. Probably not a wise move and one I'm bound to regret tomorrow. I have also slept a fair bit today so typically feel quite awake now. I have just put Kate to bed and Linda and myself are sitting,like a couple of pensioners watching Cranfield. We even watched songs of praise earlier. I cannot believe Christmas has gone. I am hoping to be around for next Christmas, in fact the next two as I have just renewed my phone on a two year contract and would hate it to be wasted lol.Hows that for optimism!!. But if it doesn't work out then my last Christmas would have been an excellent one.

Morning Bob - your optimism is to be applauded............as is creating long-lasting good memories for your family................ Love and ((((((hugs)))))) to you all Dot xxxxxxxxxxx

Thanks Dot

Talking of memories I finally  got round to writing my goodbye notes today in case they are needed quickly. I have had pictures printed on cards and all the pictures are lovely ones of myself and the person to whom the letter is for. It was not an easy job and I hope by the time they are needed they are really out of date. Not a good start to the day, Linda and myself had a bit of a fracas but at least it did put me in the right frame of mind to do my notes so at least some good came out of it. Having Cancer is so stressful at times and as I have said so many times, it is so much worse for those dealing with the  patient. I worry so much about how Linda, Kate and the boys will cope when my time does come.  Sometimes i let the worry of their future get in the way of our here and now. Linda took iKate and her friend to the sales in Cambridge  and no doubt gave my credit card a good bashing, serves me right eh. Tomorrow we are  going to take a winter stroll around a national trust property which will be great. Apart from being really tired I have also been getting more of the pins and needles feelings, not only in my hands and feet but my arms, chest and legs. It is a bit weird. Matt came home from work a bit upset today as he saw someone with brain mets having really bad fits and he knows that I will most likely go down that route, in fact with the 26 brain mets ive already had treated  im amazed I havn.t  had a fit  already. Lady luck must still be looking down on me. My tummy has settled from the point that I do not have to keep running to the loo every five minutes but I do have a wind problem which is all the "u"'s,  uncomfortable   uncontrollable and unforgettable for all in range of it.

Happy new year everyone 

Ah Bob, I don't know how many times I've had tears at the beginning of your posts, only to end up laughing. You are incredibly brave, and so funny. Incidentally, I hope Linda hit the sales big time, I do when I Take (!) Jim's card.

So pleased Christmas  was a lovely time for you and the family, you lasted longer than me......and that was without any alcohol. Hope all your "u's"  (sounds mad, doesn't it:-) sort themselves out pretty smartly. For everyone's sake!. Big hugs to you all, my friend.

Ang xxxxx 

Hello Bob, just to let you know I am okay. I have had some time out from the site for many reasons - the main one in the beginning was because of the change to the site with no notice from macmillan, and i felt lost, i continued to try and get in but found i ahd to change my password every time i wanted to log in and time and again fell in to a pit of despair trying to get in that i just gave up.

My other reasons were personal as the direction of my life was changing faster than i could possibly cope with and i needed to take stock. I have travelled a long, tiresome, desperate and incomprehensible road of tragedy and loss, as you all know,  because you have travelled it with me. But now, 20months after my Mart took his last breath, I can say I am happy again.

Getting to this place has been hard, frightening, and it is somewhere i never thought i would ever reach again, but somehow my girls and I kept going, always believed in life and would not give in to this bastard disease that took away so much. I always  believed the best way I could honour Martyns strength and courage is by living my life, showing the girls that life is always the best option, so when i entered the dark tunnel of grie, i also embarked on a series of goals, and my thought process was 'mart, be with me just while i get to the supermarket' and when i got home it would be 'see, babe, it will never win, up yours cancer. Every time my girls achieved anything after that it was up yours cancer, and a proud feeling that i hope never leaves me.

I have been double blessed as i have found happiness again in somebody incredibly special. I wanted you all to know that I will continue to log in regularly now as i have sorted the technical problems and my life is more settled.

Keep going everyone, I think you are doing amazingly well and thank you for all of the messages - i just received them this morning. I was also goven the opportunity to look back on my journey, on my experience of cancer, death, sorrow, loss and Mr Grief, and as a period of time has passed, i am able to look at it comparitively to the here and now. I will never have the answers, nor a pain relief, i will never 'get ovwer it' or understand it, never accept the injustice of life, but merely a slow acceptance of the sheer tragedy that ocurred in my life, and the struggle it has been to re build, to carry two grieving children through their grief, and to look back and say i have done him proud feels good.

I am still grieving, will for the rest of my life, but i am also living again now. My children laugh again with true mirth and my heart is sad for times gone by, but also grateful for those times, but I only carry a heavy heart at times now. Happiness and sorrow are slow close together and i tend to drift in from one to the other- but the future is bright. And hapiness far outweighs the sadness now, for which i am not ashamed to say because it is what Mart would want, and i hld my head up high and smile when i feel good, because the lows are just too low to describe sometimes.

It is great to see you still fighting as hard as you do Bob, and I was so pleaed to see so many messages from you when i eventually got in this morning. You are a tower of stregnth to everyone on here Bob and not to mention a barrell of laughs at times!! I  am sending everybody on here all the love in the world, biggest hugs, and i want you to know that I think you people are the most super brave people in the world. God bless you all, much love, Teri xxx

So good to hear from you Terri.  I remember too well the tough times you went through when Mart was so ill and I can totally understand your reasons for needing to take a step back from this site and take stock of things. You were a fantastic carer and Husband to Mart and I know he will be looking down with approval. You cannot change the past but you can make changes to the future and I hope  when my time is here Linda can eventually move on and find someone else to be happy with.  I am glad your Children are doing good as well and your are damn right to look back and be very proud, please keep in touch and a special good wish for a happy 2010.  x

Today I awoke early  but after a really good nights sleep so that was ok. We had decided we would do something today and was going to look round a national trust property but luckily Linda checked on line for the opening times, they were shut, typical eh. So instead we had a lazy morning then decided to pop in to Cambridge, big mistake, it cost me a fortune again with both Linda and Kate enjoying the sales. Its a bit strange but I cannot allow myself to buy new clothes or bits as I almost think it would be a waste if I were to suddenly pop my clogs. Im sure once the next set of scans are over I will feel better and buy myself a new wardrobe, possibly even some cloths to put in it lol. I have felt ok today but was ready to come home after the shopping trip. We are off to the Marsden tomorrow to pick up more Sutent , after my consultation with proff Gore.  I will need to tell him that the side effects seem worse than the last lot of treatment I had but will not let that deter me from taking Sutent.  I am struggling a lot more these days and find it just a bit harder to find the energy levels I had a while ago but on the whole I do OK and hope to battle on for a while yet.

Hi Bob,just to wish you a happy belated christmas and all the very best for 2010, i hope all your hopes and wishes your family have come true,,XX speak soon lots of love Fay.XXX

Thanks Fay, and a happy new year to you and your family also.

This morning we set of at half six to battle our way in to London for  what we thought would be a busy journey but typically we encountered hardly any hold-ups and arrived over an hour early. We had a good chat with Proff Gore and spoke in length about my discomforts over the last cycle and  if things are no better on the next cycle then I will have to consider reducing my dose, not something im keen to do but if it improves my quality of life I have little choice really. I am nether the less hoping that things will settle and become a bit easier. Then it was off to have my blood tests and the poor nurse had one go and totally flapped and mucked up and had to send for someone else. I did reassure her that my veins are really difficult to find but she was out of there as quick as a vampire draws blood, oops sorry. so we drove home sort of satisfied and await the results of the next cycle and subsequent scans with interest.  I think prof Gore has another drug in mind if the Sutent does stop working but is not sure if my insurance firm will fund it. Bupa have been very good up to now for which I am eternally grateful. it is wrong that anyone should have to rely on private health insurance to get the new drugs but as was proved when Sutent first came on the scene this is often the case. Depending if my job is still intact in 2010 will dictate if I still belong to Bupa as at the moment it is tied to the job. I have looked at taking it over but it is expensive.  If anyone has the chance to get private health insurance, as I did when my firm was taken over a while ago I would really recommend it as in my case it has literally been a life saver.