Diagnosed with double cancer- I think it's time to talk

[StayPositive]

Hi All,

Please welcome me to the club. I was diagnosed with bowel cancer 6 weeks ago- and told I might have had it for at least 7/8 years. I was confident I can get through it however bad it is. Getting through might mean getting out of it completely, or living life fully as long as I have it. I was keeping it under the wraps with most of my friends and colleagues- I wanted to see how I come out after the surgery. I was even looking for alternative job options to suit my new life, until recently.

Thinks have turned worse in the last couple of weeks. Now I have also been diagnosed with a different cancer in one of my kidneys. They are operating on my bowel next week but the kidney needs further work later- not even sure what that means. I am now feeling difficult to stay positive, to say at the least.

I never was afraid of dying, however ironic it might sound. But now I hear death knocking on my doors. I am very worried about my family. I have a very caring wife and a 15 year old son- and our family is all we have. We don't have active communities around us, and have a very few close friends. Despite living in Australia for over 15 years, we have limited our lives mostly within our own little family. Now I need some social support around my family in case I don't make it.

We live around Ormond/Brighton area and in the past few weeks I have been searching for cancer suppport groups in this area- not much success. We have been asking the hospital doctors and nurses- have received very limited info. I thought the forum could point me in the right direction.  

[Budgie]

Hi StayPositive

Welcome to this not so auspicious club 😉.    I understand what you’re feeling as I worry about my hubby after I die.   Like you, we have no friends outside of the family unit that are close in distance to us.   We just haven’t had the need or inclination to make any.   The “friends” we do have aren’t very supportive, so we tend to steer clear of them.    He says he’ll be fine when I’m gone & I know he’ll keep himself busy.   But there are times when you just need someone, even if it’s just for the company.   

Do you mind if I ask what type of kidney cancer you have?  I have Renal Cell Carcinoma which has metastasised. 

Budgie

[StayPositive]

Hi Budgie,

I also have the Renal Cell Carcinoma. I think it is in its early stages and hence why the colorectal surgeons decided to go ahead with my bowel surgery which is in need of urgent attention. I will need to wait a while to learn more about the exact situation with my kidney cancer. I think is it is going to be a very long journey with two cancers in my body.

I hope you feel positive about what you have and keep living life fully as long as you can. I can feel your pain and worry. Prayers for you and your family.

Do you live close to Ormond/Brighton by any chance? I am looking to build/join a support network in my area.

StayPositive.

[Budgie]

Thanks for your prayers, StayPositive, & I intend to keep as positive as I can.  I have too much to live for to be dwelling on negatives.

It's good that the RCC is in it's early stages.   Depending on where the tumour is in the kidney they may just be able to ablate it without too much invasion.  The good thing about the kidney is that your body only needs about 20% of one to function properly (so I was told by a surgeon).   My brother is also a 2 cancer surviver.  He's had prostate & kidney cancer.  Luckily for him, the tumour on his kidney was on the outside of it, & fairly small.  His GP is wondering if it's hereditary in our family, as it's a rare cancer & to have it in 2 people in the one immediate family is very unusual. 

Anyway, I'm glad they've found it early for you.   

I live on the Werribee side of Melbourne.

Budgie

[PhilPepper]

Hi,

Our stories seem closely aligned. I also have bowel cancer. I thought I could have written your post for you, our experiences are quite similar.

I've just had surgery a few days ago. Not much else to do in hospital at 5:00am, so I'm cruising this site. I haven't been diagnosed with secondary cancer but they are watching some spots on my lungs over the next few months.

This is the first time I've had surgery. It's tough enough. I now have to learn to live with an ostomy bag, which is a huge change. But realistically, my life changed from the moment they confirmed my diagnosis. Now it's like I can't recognise who I used to be. I don't think I can be that person again. If I look at the good side of things, I've grown as a person. I could be fighting a losing battle, but I still fighting. I've found hope and I see myself differently in the role I have amongst family and friends. I feel a strong urge to be here for them, not for me, and I've gained strength from that.

I guess what I am saying is that of all the emotional turmoil, I found something to give me hope and a desire to fight. Not every day is great, some days I am overwhelmed with sadness, but I feel I need to have my sad days too, if only to keep me grounded. Remind me of who I am now. I think I'm a better human being and that means something to me.

All the best.

[looker_labs]

There are so many good enterologists - I worked with a guy who would **bleep** that on the way out of an ordinary colonoscopy.

did he do any exploratory?

[StayPositive]

Hi Phil,

I hope you are recovering well. All the best.

My surgeons are very happy with my surgery and recovery. I am now able to walk and do some light activities. I am still very nervous about visiting the urologist- scheduled in a couple of weeks.

As you said, we grow significantly as a person through this experience. We learn to take life as it comes - one day at a time. At the moment, I am taking a lot of time for meditation and mindfulness practices. Everything is uncertain and everything is impermanent. I am trying to figure out what is the best use of my existence. I feel more calm now but it is like a roller coaster - one little trigger and I might be in the middle of the storm again. I hope I will soon find a way to a more purposeful and fulfilling life. 

[PhilPepper]

Hi StayPositive 

I'm now 2 weeks post op. Movement is getting easier, but so is over-doing it too. Still 2 weeks before I meet the oncologist. 

Now I'm dealing with ostomy fails. At the appointment with the stoma support nurse this morning, she pointed out that the two week mark, things are settling down from surgery and things will start getting better, but at the moment, I am really struggling. I have a lot of irritation on my peristomal skin, which is only getting worse and breaking down adhesion. So I'm prone to leakage, despite the number of remedies they have to prevent it. The stoma nurse has provided some alternative products to get me past the issues and thinks it won't be an issue in weeks to come.

In the meantime, I'm fighting off depression and anger. My grand plan is to resume normal life as much as possible and don't let it beat me. The plan seems to be coming undone so quickly. It's knocked me for a six.

Good luck with the urologists. Keep fighting the good fight.

Cheers

Phil

[CaptainAustrali]

It's ironic - the one thing I want, above all others, is for my children to outlive me.

I just don't want it RIGHT NOW, please and thank you.

My kids are aged 6-10.  Youngest was 4 when I was diagnosed.  Middle guy (now 😎 is autistic, and we have a special bond.

The idea of him coping with the grief of losing his dad ... it .. it wounds me in a way I cannot describe.  It oppressively crushes down on my soul, it's just awful.

But .. I'm not dead yet, in fact, I'm lucky, my treatment worked and I'm (touch wood) cancer free.

I hope your treatment trajectory gets better, it sounds really bad that the cancer has spread.  As your son is 15 years old, the only suggestion I can put forward is two-fold:

1) whether it's a month, a year, a decade or longer:  love the bugger as hard as you can for as long as you can (goes for wifey too)

2) get a camera, and record messages to your future son - if you survive, you can still watch them together and celebrate that you're alive .. but if you're not, I think it will comfort him to be able to connect with his dad on his 21st birthday, or after he marries, that kind of thing .. just think of those future milestones and record little messages and save them on a memory stick marked "I love you, Dad"

(you know what I mean, just name the files for what they're about "21st Birthday" "Feeling Blue?" "Graduated High School" .. and don't taint them with your grief, be as natural as you can - he'll always have that to keep you alive in his heart)

Just my two cents - sorry if the suggestions are gross or creepy to anybody, but I personally, were I bereaved, would love to have messages from the loved one (maybe not at first, but later, after that first period of ravaging grief has passed)