BOB JK My diary of kidney cancer (to be continued)
FormerMember
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Hi, My name is Bob and I live in Cambridgeshire. I am married with an 8 yr old daughter and three older step sons. Up untill the end of last year everything was tickety boo having recently moved to a new house which we love. Work was busy but enjoyable. I am Manager of an electrical companys maintenance department and my Wife, Linda was enjoying her job as a Nurse. The three boys are buying there own house nearby and all work locally. In November I went to my Doctors with a small "cyst" on my chest. After a couple of referals and many Xrays, pet scans, bone scans and CT scans I was told the news everybody dreads. My lump on the chest was a secondary cancer of which the primary was in my left Kidney. I was fast tracked to the Royal Brompton, under the expert care of Mr Laddas who informed a long and complicated operation would need to be carried out to remove the bone tumor and surrounding bone which involved two ribs,my collar bone and chest bone. I did not have time to panic, the operation was carried out the next day over 10 hrs. After nearly two weeks in the Brompton I am recovering well from this op but I have since been told that the Cancer is in both kidneys as well as small mets in both lungs. It seems at the moment further ops are out the question and i have been put on the drug Sutent. I am one week into this and so far so good. I do not know what the future holds but I have to remain positive.
Im sorry about your situation and really feel for you all. As far as getting Rebekah help we got kate her help through our doctor, she referred us to the appropriate plsce to get help so I would suggest your first port of call would be your Doctor. Depending where you live might depend on what services are available. What has been your husbands worst side effects, mine is fatigue, diarrhoea, joint pain and high blood pressure, also my thyroid packed up which was hell until they sorted it .Also if you might like to get in youch with your macmillan nurse and your district nurse can help with injections, Good luck.
I was fair when I woke up today but appetite is poor so have been having complan. Really tired and sicky later in the day and have been in bed for a good part of the afternoon and am in bed again now. Thanks all for your messages. hopefully a better day tomorrow x
I have been feeding my husband complan since he got out of hospital 5 weeks after surgery. I add cream to it for the calories. My husband has a differnt GP practice to me so I don't have the contact there. I will phone and ask on Monday. The district nurse was notfied when John was discharged from hospital the first time but we have never been contacted. We ear in Surrey. I am not sure where to turn and other than the internet feel really quite lonely right now. You are the only person with this disease I have found who has a young child. My husband is 20 years older than me and it was never a problem, but now I feel it is as they just done't know how to deal with us. Here's hoping I/we can be as strong as you.
Re SE's virtually none at first. Cycle 1 a breeze until week 4. Then fatigue. The shits, sore hands/feet then nausea. All getting progressively worse. To be honest it has been worst in the first few days off until now when it is really bad. He haas slept for 14 hours and still fels tired. Up for 4 hours in the night. Getting really very worried. I don'y know how to help make it feel ay better>
Hope, really hope you are feeling less grotty today Sir Bob, how I wish I could programme you in to a remote control, obviously rewind the whole lot, but if not fast forward next week hey
Thinking of you matey, Lovely Lady Linda and Katie too,
We are all scrapping with you, you will get there, I know it !!
I am feeling less grotty today Kate. After a good nights sleep I awoke at a reasonable hour and managed a small amount of breakfast. after a relaxing morning, Tom and Katie came over and after a drink we went to Anglesey abbey and had a nice couple of hours wandering around the grounds. The weather was really sunny and warm and despite resisting Linda,s pleas to use a wheelchair I fared really well. Once home, I had a little sleep and now have just managed some chicken and rice, so far so good. Thanks to my family for a lovely day. Just what I needed before my week of dread starts tomorrow.
Hope you slept well last night Sir Bob and that todays not too awful, good job Im not driveing you- eek, the days pre-satnav I used to direct myself up the crease of the map !!
Your afternoon yesterday sounded lovely you made me laugh refusing the chair, typical you and poor Linda, I would of been on her side strapping you to it !!
Ive been even worse today Kate, After our early morning stint to London I came home and did some work in the garden, poor Linda,s face. "Im doing it" I said and I did.
London went ok, I met with professor Gore and He looked at my blood results and amazingly, even after coming up in bite like marks all over my body on the day of the tests, all was ok. We then broached the Subject of how soon to go back on the Sutent. I was determined to go back on it as soon as radiation treatment is done and luckily did not have to resort to plan B. He mentioned that the brain specialist might have mentioned about being able to start back on it straight away,"thats right" I said "just what he said". So we came away with Sutent ready to start again a week on Wednesday. By the way, plan B was to use my own little left over stash of Sutent, one every two days to "tide me over". I have already seen the repercussions of being off the Sutent for too long and was not about to let that happen again. So now, time to rest, just as Linda is telling me too, eh lol. A new side effect is phlebitis, in my arm, which is basically a inflammation of the vein causing a small thrombosis. I hadn't even planned on showing professor Gore this but Linda did persuade me otherwise on this one. All in all he seemed happy with how I was. I am expecting to feel a lot worse as the week goes on but can take heart from the fact I seem to have recovered quickly from the three days last week. Even managed a roll and two sarnies at the hospital and nearly a full bag of sweets on the way home.
hi bob just had to write to you hope you dont mind, my mom as just finished her first cycle of sutent she not well at the moment ,she does not want to eat or drink is there anything you can advise us togive her we took her back to the hospital on friday they have given her more mouth wash and thing for her to take .i know her mouth is very sore at the moment and it hurts her to drink and eat she looks so poorly at the moment i wish we could do something else for her.did you find you had the same problem at the first time you took itshe has to go back to the cancel unit on wednesday .the only place she going to since last septmber is the hospital we can not get her out at all she seams to have lost all her confidence.im sorry to go on i realy dont know what else to do
Hi , I thought as Bob may be resting I could answer your ? in the meantime, you can get energy/food drinks on prescription Fortis with various flavours to help your Mum's appetite, she may also find it easier with a straw whilst her mouth is tender. Many people find this on sutent but it does lessen over time.
I use Biotene mouthwash( no alcohol or strong taste to it) and biotene dry mouth toothpaste which really helps when my mouth is tender on sutent cycle. You can also get these on prescription or buy in Boots chemist. Oral hygiene is so important to help clear inflammation even a weak saltwater solution as a rinse will help enormously.
Some people find pineapple eases the soreness and an ice lolly can help.
