We understand that people with cancer are worried about coronavirus. Here is the latest guidance. We will update it regularly.

Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

My husband been diagnosed today.

Jo300
Posted by

Hi Buttercup19

Was your husband already losing a lot of weight before his diagnosis?

It's a difficult one, I know when I get really bad news, the first thing I do is stop eating - and it can last for a while. It's not deliberate, it's just how my body reacts, Eventually I start to eat again.

It's obviously very different if you feel as though his weight loss is very dramatic.

Sue's right - a courtesy call would have been nice and you have a right to expect that, 

It's not a case of being unrealistic. You world just collapsed and from your perspective this is an emergency that you need answers to now. The information that I gave you about timings could have been given to you by the hospital - that would have given you something to go on, instead you felt you were left in the dark.Once you have that, and you know why it's that, it's a little easier to process.I'm not sure if you have shared what we have said with your husband, but if not it might help. Knowledge is power as they say.

It sounds as though your GP is being very proactive and that's lovely, mine didn't even acknowledge I'd had cancer or a nephrectomy when I saw him before he retired!! He could be really useful in getting information for you if you feel as though you're not having much luck.

I haven't really had dealings with Macmillan but everyone rates them very highly, so maybe a chat with them could also help a little?

Jo
x
Buttercup19
Posted by

Hi Jo300

Thank you for replying, yes he was losing weight before his diagnosis it was one of the reason he went to the doctors. it all started at the beginning of February when he had an abscess under his tooth. His appetite has got poorer since the diagnosis and I suppose it could be worry as I’ve lost some myself.

I did share your information with my husband, he’s a very quiet man at the best of times so I’m trying to pass on any relevant positive info I receive from the group so hoping he will talk with me and share his feelings.

Thank you again for taking time to reply

Buttercup19

Buttercup19 
Buttercup19
Posted by

Hi Sue,

Thank you for your reply, yes it is hard to wait and not be in control on what is happening in your lives.

The most scary aspect is not knowing what is going to happen but hopefully we will know more on Monday after his telephone appointment with a consultant.

Sorry I hadn’t realised you had lived with Kidney cancer for 15 years and I’m going to read your story now as I’m hoping it will give me some positivity. 

Thanks for your positive comments which are very much appreciated   .

Buttercup19 x

Buttercup19 
Gragon
Posted by

Hi ,

My dad had the high calorie drinks many years ago and hated them as they were too sweet for him.  He eventually managed when he realised if he poured them into a glass and added a measure or two of spirits they made quite a nice night cap.

It requires a bit of a change of attitude but high calorie is what it is about.  You may have tried them already but Ice cream, rice pudding, drinking chocolate, chocolate biscuits with his tea, honey over full fat yogurt, syrup sponge and custard are all the sort of temptations that you normally try to limit but if you are trying to gain weight then they are good.  Sometimes you feel like something but by the time it is prepared you have gone off the idea, it is good to have things like favourite sweets and chocolate to hand then if he gets the urge to eat one he can do so whilst he still fancies it.

When I first started on my medication I felt nauseous and didn't want to eat and it took me a while to realise that actually if I nibbled and just had a little food in my stomach it helped keep the nausea at bay and also meant I was eating enough.

I'm sure the dietician will have a much more profession approach and be more able to balance the need for calories with ensuring he gets the essential nutrients.  Hopefully it will become clearer what is going to happen when you get to see your oncologist.  Whatever options they offer it is likely to address his lack of appetite simply by dealing with the cancer.

I struggle to remember everything I want to ask so suggest that you write down any questions that you might have both for the dietitian and your consultant.  When you ask the questions don't forget to take the time to write down the answer as well or you will forget again as soon as you walk out of the meeting.  One that I would suggest is that you ensure you get telephone numbers, e mails, and names or job titles of who you can contact if you have further concerns or questions after the meeting.  If you ask for them you are entitled to receive copies of all letters sent to your GP and copies of any reports such as CT scan reports or blood test results, I would do so as although you probably won't understand them initially as time goes on you will be increasingly able to interpret them yourself.  Unless you have medical training you will probably still have to ask if the outcomes are significant but it gives you the information to know what questions to ask.  It is possible to pay for a copy of the actual scan to review on your home computer or PC but to be honest the only time I did so it took me half an hour to work out which was my chest and which was my back and I had no chance of seeing the tumours so I don't bother now, I know that some people do get them.

It gets a bit better once you know what the plan is as you can focus on what needs to be done and ensuring that you do whatever you need to do to keep the plan moving.  I hope you find out soon what is going to be happening.

All the best,

Gragon x

buttercup01
Posted by

Do let us know,your news on Monday.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Buttercup19
Posted by

Hi Gragon,

Thank you for the hints and tips on food, it’s sometimes the obvious ones you’ve mentioned you don’t think about.

We had our first face to face meeting with the consultant and I’ll put on an update.

Kind Regards

Buttercup19 
Buttercup19
Posted by

Hello Buttercup1

The appointment was changed at the last minute to a face to face one, he showed us the scan pictures and my hubby has been diagnosed with tumours in his lymph node near his right kidney and also one in his lung, I was told I couldn’t go in with him but the consultant then asked me to go in after 10/15 mins when my husband mentioned I was sat in the car so I hadn’t taken any paper to make notes but a named nurse is ringing us later today.

He is going to have a biopsy in the next week or so and he’s fast tracked him to a Dr Brown at Western Park Hospital for Chemo to try and shrink the tumours and then may possibly remove the kidney, that is all I know at the moment. It’s not the news we wanted but strangely we both felt calmer when we knew what would be happening. 

Regards

Buttercup19 
buttercup01
Posted by

Indeed u will feel calmer now u know what's happening.

Keep us up to date with your news too.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
buttercup01
Posted by

Any more news ?

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Buttercup19
Posted by

He goes for his biopsy tomorrow x

Buttercup19