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thommo999

Time to come clean....

... I have not really been coping very well...

I was first diagnosed on 6th Oct 2019, just a few hours before emergency surgery to remove a pT4N2 tumour. I was (luckily I still am) married with three kids and having just finished my 4th major charity cycle event, I was not ready for this ride! I was fit, I was healthy, I was only 48 and I had just raised about £250K for health related charities (including Bowel Cancer UK, MacMillan, CR UK and WCR). Now I found myself waking up in a hospital bed, realising what symptoms (physical and mental) I had been ignoring for months as life was too busy and I was too scared. Now I really was scared... SCARED like never before...

Two years on and I realise I still spend more time in denial than 'living'. I like to take care of people, to make things OK, to keep things to myself, to not bore my friends, to not worry my family, to show people at work that I am still the happy, friendly and professional Ian that was there before cancer.

Underneath the surface I have finally admitted I am not coping. I struggle to sleep, I worry every day, maybe several hundred times a day. Life is still good, I am still lucky compared to many but I am existing rather than living. Decisions are just too hard as everything is linked - health, work, family, finances. I have lovely family, great friends, amazing colleagues and I work for a responsible and caring employer.

Last night I had a call with my consultant to review the results of the latest set of scans and bloods. With three of the family going through covid in the last month and my eldest boy having scans (last Fri), endoscopy and colonoscopy for stomach issues (!) on Monday this week.... I was hoping for some good news...

Panic stations again........ CT scans showed no bad signs but CEA levels have risen again, bad (5.2) but not devastating..... varying every test but pretty much always on the rise from 4 to the current level.... I had been hoping to move to 6 monthly tests but now we stick with 3 monthly..... a good thing to check and a curse as scanxiety has barely gone before it starts again...

Anyway, just a bit of my story.. this post is more to say 'HI' and to say 'THANKS' to this community for the amazing support I have silently consumed through the night on many occasions whether in hospital or at home.

My message is also my first admission that I am not coping well despite the 'happy pills' I finally admitted to needing to stop me crying at nice stories, kindness of friends and Strictly Come Dancing.... seriously, WTF has happened to me.. I might be two years into my cancer ride, but I hope it is a turning point for my emotional journey..

Thanks again to this amazing community for being balanced and sharing positivity and strength to those that need it (as well as the great advice).

I am not sure I have a say in shaping the physical journey ahead of me, but I know being more active in this group may help me with knowledge and emotional support.

If I can contribute in any small way to helping others, it would be my pleasure within this community. Just like the charity rides I started when my friends daughter was struggling, my cancer treatment and subsequent care has been kinder because of those that went before me. It is time for me to pay some kindness forward..

Ian

Lucy118

@thommo999, so pleased for your son and love your puppy! Enjoy your few days away with your family :x::x::x:

Baxter2

Awww, your puppy @thommo999 !! Gorgeous!!!! We’ve been away on holiday in Brighton all
week and on way home now. I can’t wait to see our little dog tomorrow! They’re such important family members. Glad your son is ok.

Lots of love

Karen 💚💛❤️💜💙

P.s You’ll be back to singing in the shower in no time!

adnil

@thommo999 have a lovely few days away 😊

thommo999

He was a post chemo, pre-lockdown puppy! Quite a personality (aka lots of trouble) but has been invaluable for my daughter and to a certain extent my middle child (boy) as he does not need to talk about stuff, just provides love & licks...

Susie Ruth

And here’s some love from me too @thommo999 That puppy is GORGEOUS :x::x:

Molly2me

@thommo999 have a stupendous time and thank you for the beautiful photo of your new family addition ....... life and memories are to treasure and those with a puppy/dog children and family are simply the best! We’ve all got grit and determination but sometimes we have to take the lid off to get to it lovely 👍❤️😉 :x::x:

Zara

@thommo999 this is our cockapoo :x: Hope you have a lovely time with your family, you remind me very much of my dad :x::x:

Lucie

Hi @thommo999 What a wonderful person you are, raising all that money for good causes, and you have the cutest puppy to boot! Your post was amazing and I am so glad you’ve reached out to this forum. Good luck for your boy’s diagnosis too. Lots of positive hugs :x::x:

thommo999

Thanks @Zara @Lucie @Molly2me and @Susie Ruth ..... whilst the puppy might be cute, he is a bloody handful.... I think he has more issues than me... thankfully he looks better than me in photos and is always appreciative of a treat or a tummy tickle!!!

So yesterday we caught up with my parents. Dad has been struggling with lymphoma for the last few years, he is in his 80's and born in an era where men dont talk about how they are feeling. I had sent my mum a link to this post and fair to say we had the most honest and open chat about what is really going on and how everyone is doing.

I guess it is sad that it took writing it all down to help me communicate better, but as with the C, there is no point in looking back and having regrets, you can only change how you want the future to be. One of the biggest highs so far has been that my dad told me that a lot of what I have written down is exactly how he feels. I think he understands me more right now and I understand how he feels too. As the generations pass, the treatments are definitely getting better and kinder and I think this type of community is also helping people to talk and communicate more and therefore help on the emotional side. Generations past will have suffered in so many more ways than us and it is way too late to expect my dad to learn and use the help available on the internet as he cannot even send a text, but you never know.. he has at least enjoyed reading these.... Hi Dad!!!

So from some bad news this week that made me wobble, more good has come from it than bad. As you all know, it is not just those battling C that are battling C, the whole family are suffering.

Love, strength and hope to you all (& your loved ones) and enjoy the rest of your weekends! Thanks again..

Ian :x::x::x:

ps - looks like I will be growing a beard this December with lots of my colleagues from work!!

Molly2me

Hi there lovely. Is there such a thing as a 'bloody handful' when talking puppies @thommo999 hahaha I don't think so!

Your posts are so very honest and insightful, how on earth have you kept the lid on this talent for so long??? Hello Dad!

Delighted you have joined us and as for all our families, it is never just us dealing with the horrendous disease, our families and ourselves struggle in many different ways, but we go forwards with hope and determination. When does puppy training start? No not for the puppy, for you haha, they say a bad dog is down to the 'parent' !!!!!!
Enjoy, have fun, and photo evidence of hairy chins required please, Im keeping mine under wraps!
:x::x::x:

jupiter20

Hi @thommo999 - just wanted to write a brief message to say thanks for your courage putting forward your story. Mine is actually somewhat similar (T3N2b diagnosed in November last year, still coming to terms). It is not easy and everyday is a struggle I have to say but what can one do. One day at a time and one foot in front of the other.

Ali

Thank you for sharing your story and how you feel. I am very up and down and it is difficult to stay positive all the time when feeling so low with treatment and not knowing what the future holds.
It’s true what they say about being good to talk ( or at least share) and you have been brave enough to do that. You have done so well with the money raised too as funds are needed all the time and I am glad that you and your Dad understand each other. I hate the burden I am putting on my family who are with me at the worst of my chemo treatment as I live alone. Love and strength sent to you with a big hug.

Ali :x::x:

Siona

Thanks so much for writing your story @thommo999, your words are spot on. Men opening up to their cancer stories are rare but you example will without doubt inspire others (of all genders) to open up and acknowledge their feelings. Love and strength to you and your family :x::x:

Kim Dazed but Plucky

All I can add Thommo999, is that it's good to talk, and even better to talk openly. And this is the place to do this. Be kind on yourself. Kim :x:

thommo999

I know I have commented less as the week has gone on but I wanted to thank you all again for the support since my initial post, I feel you have been there every day for me, either in this post or those that have messaged privately.

Lucy (my wife) and Abbie (my daughter) and our adorable/troublesome 'pup' Freddie have enjoyed a few days away. It has been tough after the high CEA reading and talking to my consultant about what (may) lie ahead but the support from this group has helped keep me grounded. I would love to say positive, but like @Ali and @jupiter20 say, it is a bit up and down (even within a day). Aside from the 'thoughts', we have had some lovely times as well - fun times, relaxing times...

My eldest boy Dan is back at Uni after his tests and is waiting on results but seems pretty upbeat to have the procedures behind him and nothing sinister spotted so far..

My middle child Matt has enjoyed his first time at home alone... We have seen his friends come and go on the external security cameras at all hours (day & night), I dread to imagine what the inside of the house looks like but I think it was time to let him have his space and fun .... hopefully the drains are not as blocked in Oct 2021 as badly as my bowel was in Oct 2019.

It has been a bit emotional talking to my mum and dad about things. Not just about how I feel/am doing, but how the women in our lifes feel as partners/carers/best friends/mums, but also how scared we all are facing the journey ahead. Everyone seems to want everyone to be positive all the time, thats just not how it works (at least not for us). We are fighting but we are frightened, especially me with a young(ish) family.

We have definitely talked more openly this week than ever before @Kim Dazed but Plucky and @Siona , it was truly a special moment for my dad to read this and open up a little bit about how he feels as well. He even admitted to shedding a few tears last night, love him!

Ian

Meg

I see that with my own family @thommo999 , my daughter handled it all completely differently to my son.
He went strong and silent and very practical, whereas she was the opposite. Between them both they managed it perfectly.
I think it is normal to be scared, I think it is brave to say it out loud :x:

Molly2me

We can never be positive and upbeat all of the time that would be such a pressure @thommo999 but communication is key and being able to do that is priceless. Much love and strength to you and yours. I have a daughter with special needs who I have yet to tell and I’m almost a year on! So it’s a personal call for each and every one of us. I’m daily thankful and grateful to my family and friends and also some very special friends I have made on here too. A day at a time and baby steps, there will be both challenging and good times ahead. :x::x::x: oooh and I love the name Freddie, as in Queen or Kruger 🤷‍♀️😉😂 :x::x:

thommo999

Fully with you @Molly2me and have seen the same with my three @Meg , we have to carefully navigate the right info at the right time for the kids and let them digest, process and ask for more info at their speed more than ours..

And Freddie as in Flintoff - a larger than life character, full of spirit, lots of fun and often goes a little too far but is a lovable rogue…

Molly2me

Flintoff never entered my mind @thommo999 you’ve described him to a T :x::x:

Quote from @thommo999:
Fully with you @Molly2me and have seen the same with my three @Meg , we have to carefully navigate the right info at the right time for the kids and let them digest, process and ask for more info at their speed more than ours..

And Freddie as in Flintoff - a larger than life character, full of spirit, lots of fun and often goes a little too far but is a lovable rogue…

thommo999

I have just spent a couple of hours catching up on some of the great posts and incredible support on this forum - yet again even reading has provide me some comfort, advice and the feeling of not being "alone" with some of the thoughts & fears that come in little waves from time to time - a credit & thanks to all of you! I am currently taking a break from work to try and get my general health sorted e.g. a ruptured ACL and torn meniscus that happened during a charity football event in 2019 whilst going through chemo! I have kept putting this off whilst focusing on the C but it stops me doing things I enjoy and improves my health and happiness.

I am also taking the chance to treat my loved ones to some of the things they have always wanted in the house and to make some home improvements that will make the them all happier and more comfortable for whatever lies ahead. I guess I am just trying to deveop a positive plan and taking control of some things that can be influenced.

Love, hope and best wishes to all of you (& your loved ones)

Ian :x::x: