So….this cancer thing is rubbish

Hi I HAVE KIDNEY CANCER AGIAN ITS ONLY BEEN 3WEEKS SINCE TOLD ITS IN MOST OF UPPER BODY AND BRIAN SO IS TERMINAL BUT HOPEFULLY NEXT TREATMENT CAN KEEP IT AT BAY FOR AS LONG AS POSSIBLE.  THEY TOLD ME 6 TO 8MTHS  COULD BE EVEN WITH TREATMENT.  I KEEP TELLING MYSELF A DAY AT A TIME.  Its the only way I can deal with it at this moment but hopefully with next treatment it reduces cancer cells enough to give me extra time. Keep fighting never give up and hopefully you manage to have extra time with your wife and family 

Hi - Sorry to meet you here, but let me share some of my experience which may help allay your fears.  

I'm 54 so a tad older than you.  I've been on immunotherapy since Jan 2022 and have continued to work throughout.  Office job too. I don't get wiped-out from the drugs and apart from when I had an adverse reaction, I now feel normal again, give or take a few minor issues. 

Yes it really does help to chat about these things.  

And how should one "feel" after a cancer diagnosis?  Anger, "why me?", "it's not fair!" are all emotions frequently mentioned but I didn't feel this.  A bit of shock maybe, I wasn't expecting the "spread to the lungs" bit.  I was straight in with the "to-do" list and let's get things in order.   We are all very different characters and so it's understandable that we all respond differently.  But, positive attitude is definitely good.   It takes time to come to terms with the situation too - you need to give yourself 3 months at least.  

Thanks for your reply . It really helps talking through  online . EVERYONE STAY STRONG THROUGH helping each other it does make a big difference 

Thanks, that helps a lot. I know everyone is going to react a bit differently but it’s great to hear you’re doing so well on a fairly similar route as me!

I think the main thing that has shocked me is the speed of events.

4 months ago we went on our happiest holiday, and now I’m at this point. Crazy.

Hi AlexD firstly welcome and you have made a great start it's difficult to get your head around everything never mind your wife's.

I had similar situation regarding diagnoses and treatment radical necphemotary and further treatment for secondary symptoms. Which after almost 18 months I am still been monitored ( immutheraphy & CT scans)

It never goes away and you will always have it at the back of your mind but don't let it ruin your life stay positive please talk to either Macmillan or a support group ( my nurse helped me with a holistic treatment run by the hospital believe you me I was very skeptical but it worked for me ) 

I have said from the beginning that you and your wife are both going through this process together most people forget it effects partners as much as you, please understand that the emotional situation is shattering but together you can support each other ( she also may get support and advice on helping you to manage with your anxiety)

It's not all doom and gloom please stay positive and remember that you will have bad days or even moment's of doubt.

I have said before that I feel like an imposter regarding treatment and surgery and everyone thinks that it's okay because the kidney and Cancer have been removed.

Always ask for support on this site there are some wonderful people who know how you feel and can help just remember everyone's story is different but similar in so many ways.

Take care and stay safe.

Mike

Thanks Mike

i know what you mean with the imposter thing, since I basically feel physically ok most of the time right now. It’s a very strange mental contradiction that this is the most serious illness I’ve ever had, but I feel a lot better than most bad colds at this exact moment haha

I find that the thing affecting me the most right now is the worry any time I feel a twinge or pain elsewhere.

I literally just had a scan 2 weeks ago so I know where things are and aren’t, but every little pain is ‘oh god, it’s spread to there too, oh god’.

No other Alex, you’re just 40 and overweight and this happened before too

I got my first diagnosis at 31, I had a 14.5cm tumour over most of my right kidney, after nearly a year of being told I wasn't old enough to have what they told me I had I met a different urologist who had me in within 6 weeks and removed it. This led to 8 clear years with just routine CT scans. Last year at the age of 40 I was diagnosed with metastatic RCC in my gall bladder which was removed and quickly followed with another scan and very quickly followed by a further diagnosis of metastatic RCC, this time in my right lung and also in my left kidney. I started combination therapy in September of last year and 7 months later I'm still doing it every fortnight. I work in ground in estimations and have continued to work as normal. Sometimes I feel tired or in pain but that's just normal. The nurses at the unit are for the most part fantastic, the treatment goes well, I found the first few weeks with premeds were difficult as I couldn't drive for 2 days after a session but after so may sessions the premeds were no longer needed, I do get wiped out by it every now and again but only if I've had a hard week etc. I have just found this forum myself and reading the posts from others such as yourself is really helpful, all of the responses look great and are very informative. Best of luck to you, you got this!

AlexD and Lander, 

Well thanks both for sharing your stories. Ive come on here as my boyfriend (I say 'boy' - he's 44) had a kidney + tumour removed last summer, and we've just had the shock update that it's almost certainly spread to lymph nodes in the chest - according to his last scan. So far we have no extra news - our last appointment was just with the nurse who delivered this bomb shell; we're currently in the midst of a 3 week wait until his next appointment, his first with Oncology. We don't know what to expect but the nurse talked about possible immunotherapy, and language changed from curative to management treatment. 

It's a shock and a half - he still feels healthy and other than peeing blood once a year ago had no other symptoms. Waiting for more information is currently killing me and I feel so powerless to do anything. He is staying remarkably positive and it's good to hear that's still possible even once treatment has begun. 

Wishing you both the best. This cancer thing sucks. 

X

Rose_Meteor said:

This cancer thing sucks.

It certainly does.  But where you are right now, the waiting for the oncology appt and the subsequent way forwards is the worst time.  The uncertainty is at the max point.  Once you have a treatment plan you will be itching to get started and then you can get into a routine.  Such a cliche, but it really does get "better".