Cancerland - my journey so far

[Sam555]

Hi everyone

I was (mis)diagnosed with stage 1 nsclc squamous back in March 2013. As I was stage 1 surgery was an option. Brilliant I thought. Curable I thought. Wrong!

When surgeons went to remove the bottom of my right lung they also found a tumour stuck to my pulmonary artery, far to close to my heart to be removed. So the tumour on my lung was removed but the other stayed put.

So I went into surgery stage 1 curable and came out stage 4 incurable. I’ll never forget how ill I felt after surgery or the ignorant surgeon who leant over me, told me the bad news and walked off before I could say anything. My world fell apart and so did that of my then partner and 2 daughters who were 8 and 10 at the time.

Then a tumour in my right breast appeared. This halted chemo and radiotherapy. Turns out they couldn't determine if this was breast cancer or lung cancer metastasis.

Eventually after a lot of kicking and screaming from me, I got chemo which after 2 rounds of gemcarbo the breast tumour disappeared.

3 months after chemo and radiotherapy a new tumour appeared in my abdomen which luckily radiotherapy zapped to oblivion.

February to September 2015

I had been having severe pain in my abdomen. Due to previously having a tumour there I was panicking. I visited my gp who sent me for an ultrasound. I was told it was gallstones and put on painkillers. The pain continued and I repeatedly went back to my gp who increased the painkillers each time but the pain worsened. One morning I took the prescribed amount of painkillers but didn’t keep them down. Not knowing what to do I rang 111. Due to my history they sent an ambulance. The hospital dosed me on morphine did numerous tests and sent me on my way. At 7pm that night I got a phone to return to a&e immediately. The test results had been written down wrong and I actually had sepsis caused by an infection on my gallbladder. I was in hospital for 10 days, 5 of which I do not recall. I was left with a drainage bag from my gallbladder. 3 months later my gallbladder was removed. At least it wasn’t cancer!

December 2016

in December 2016, the scan results were not what I wanted to hear. The cancer had started growing in my lung lining, the same side as my original tumour. Fortunately, I had some tissue left from a previous biopsy so that was sent off for pdl1 testing right away.

As it was positive for pdl1 (less than 10%) I was able to have pembrolizumab. I started on this in January 2017.

A cough continued to worsen and in February I was feeling so bad with it, I went to see my gp. He sent me to oncology who had me immediately admitted to hospital. Apparently I had a pretty serious chest infection, unrelated to the cancer. I was given steroids, intravenous antibiotics and a nebuliser. I was feeling on top of the world and back home 2 days later. ( pretty good timing really as I got married two days after that to my partner of 32 years).

From then I continued having pembrolizumab every 3 weeks until January 2019 when the 2 years allowed on immunotherapy was up. Initially there was some reduction in the tumour size and from then on my tumours remained stable. Fortunately the only side effect was fatigue.

It will be 7 years in March since I was first diagnosed. My recent scan on 2 November shows I’m still stable.

I was pretty sure I wouldn't survive more than a year or two and if I did I would be bedridden. Luckily, I'm doing really well. I've had to slow down a lot due to breathing issues and damage to my spine, but on the whole I'm doing almost everything I used to, just doing it more slowly.

I feel as well as I did this time last year so no complaints there. My oncologist has told me there will be other treatment available to me when the tumours start growing again, most likely more chemo. Not the best treatment I could wish for but certainly better than nothing.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi,Sam

Thank you for sharing your journey with us. You have indeed been on an emotional roller coaster.It's great to hear that seven years on you are doing well and your latest scan hows you are stable.Research is ongoing and as your oncologist stated other treatments will be available to you if and when needed.

With best wishes,

All the team at the Roy Castle helpline

[rottenrunner]

hi Sam555 that is some story, so glad your doing well, and that there's options for if and when the tumours start growing again, have you considered going vegan, I went vegan when I was diagnosed and 5 months later my cancer was dormant and has been for 9 months now, I've just had some radiotherapy for some cancer in my rib, but think it's just a bit that the chemo missed so not worried about it, good luck and wishing you all the best, my story is on the Follow My Lead campaign if you'd like to see it, David's story, take care and good luck for the future

Dave 😊👍

[Sam555 in reply to rottenrunner]

Hi rotten runner

I’m pleased to hear your doing well and I’ll read your story later.

I say do whatever it takes and whatever makes you happy so if becoming vegan is for you then you go for it. We all have our own reasons for doing what we do.

My approach has been totally different though. My own logic tells me healthy eating can’t be all it’s cracked up to be or healthy people wouldn’t get cancer and they do.

Also, Back when I was first diagnosed I got chatting with a lovely nurse from the oncology department. She told me to completely turn all I’d ever heard about healthy eating on its head and to pile as much weight on as I could because treatments could mean I’d lose weight. I took her advice and gained 3 stone. She also told me not to eat raw fruit or veg, to use tinned or frozen.

I now literally eat what I want when I want. I have the occasional fresh fruit but mostly not. If I feel like a cream cake I have one and don’t think about the calories anymore. I feel well and I’m happy so I’m sticking with it, at least for now.

Take care.x

[rottenrunner in reply to Sam555]

that's great Sam555, what works for you is best, I always say a bit of everything can't hurt, certainly a cream cake every now and then won't hurt, enjoy, take care

Dave 😊👍

[Sam555 in reply to rottenrunner]

I’ve just read your story. Glad you’re doing well. Amazing how you’re perspective on life changes after diagnosis. X

[Elt79]

Wow you have had a journey! So pleased to hear your latest results are still stable. I wish you the best of luck that this remains so for a long time!! Stay strong and positive, xx

[Sam555 in reply to Elt79]

Thank you.

I intend staying positive for a long time to come although there are days when I definitely don’t feel that way. As for being strong, I think it’s the people around me that are the strong ones. X

[KlaraP]

Thank you so much for sharing your story. It sure gives us strength and hope that there can be light at the end of the tunnel. Wishing you and your family all the best!

[Sam555 in reply to KlaraP]

Thank you.

I remember when I was first diagnosed all I wanted to read were positive stories. There weren’t so many back then.x

[JanetteR57]

Thanks for sharing your story - and like others, you've had ups and downs and also express the relief (that I've also experienced) when hospitalised with other issues that they weren't cancer. Well done - we need more updates from those doing well or better than expected as they give so much hope as well as showing the reality that even with a cancer diagnosis, we will/can continue to develop other conditions/symptoms that require treatment. keep up the good fight...

[Sam555 in reply to JanetteR57]

Thanks.

I did just want to show that there is hope for a life with a terminal diagnosis and also to highlight that when treatment of pembro stops there is a chance of it continuing to work, at least for a while.x

[Charleyf]

Thanks for sharing your story , it certainly helps those , and myself who are in similar situations to be invigorated by the example of your spirit and stamina - Love to you for it !

[Sam555 in reply to Charleyf]

Thank you

Glad it helped a little. Take care.x