Moving on from bowel cancer

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Worried_Jay

Almost a year on from diagnosis & feeling very emotional

Hi everyone,

I’m almost a whole year from the absolute worst day of my life, Friday 22nd January 2021, the day my life changed forever. I remember shaking and shivering waiting almost an hour for the colonoscopy, then seeing the tumour on the screen and saying ‘that doesn’t look good’ 😟 the room turning silent, those words ‘I’m so sorry but….’ Unfortunately many of you here will have experienced this exact feeling of despair. The worst part of it was having to go home and tell my 2 young children 🥲💔 These were the darkest days of my life, I chose not to go public and only told immediate family and very close friends. I joined this forum and got all the support I needed from people who truly understood what I was going through, I honestly don’t know what i would have done without the support from here 💙

Now next weekend is that anniversary, I’m feeling very emotional about it 🥲 I’m thinking of going out with my husband and children just maybe into town or something have lunch together and enjoy a bit of shopping, anything for a distraction.

I’ve got my 50th birthday coming up in February (it’s hubby’s 50th too later in the year) years ago we’d planned to be extravagant and maybe go to New York, Disneyland or somewhere similar. Now I just want to stay in the UK I feel safer here it’s not just about covid but I’m just more comfortable, here, hubby said he doesn’t care where we go as long as we’re all together ❤️ So I’ve booked a night away at Cadbury’s world then a safari park the next day, not quite New York..Lol. It’ll just be nice to get away before all the surveillance starts in March CEA bloods, CT Scan and then the dreaded Colonoscopy :x::x:

Worried_Jay

Hi @BeccaHerb yes I truly believe although not the birthday we both planned I need to feel comfortable and not out of my depth if you know what I mean.

I didn’t have any counselling but It was mentioned on here by others to look into it, when I did the hospital said due to covid they weren’t taking any new patients, this was last year so not sure of the situation now? Maybe I should enquire? My oldest child is suffering from stress and anxiety at school at the moment so trying to get him some support, it really does affect the whole family doesn’t it.

Yes please let me know how you on with your counselling and I hope your scan next week goes smoothly :x::x:

Lucy118

@Worried_Jay, sounds like a lovely couple of days to celebrate. I’m sure you’ll all have a fabulous time. Sending lots of love :x::x::x:

Baxter2

Hi @Worried_Jay,

I think we can never underestimate the trauma of a diagnosis such as this and all that it brings. Many experience similar emotions at certain milestones in our cancer 'journeys' . I know I do. I felt very emotional reaching the Christmas of 2016 (I'd been told at the start of that year that I was unlikely to live beyond the end of the year) and more recently, walking my oldest grandson to school for the first time back in August when my oncologist had said she didn't know if I'd be alive to see him born. I do think counselling or group work is a great way to process these feelings and emotions. You may like to check out what's on offer at Penny Brohn, Maggies and also Macmillan for that kind of support. I had 1:1 counselling from Maggies in 2016 and found it invaluable. I've also been on five residential 'courses' at Penny Brohn which were amazing! Whilst they don't do these at the moment, they have loads of online holistic support available.

I'm sure regardless of what you do for your 50th, that it will be such a special birthday for you and your family. Try to push March's surveillance stuff to one side for now if you can as we know how stressful this can all be.

Sending lots of love and very best wishes,

Karen 🌼🌺🌻🌸🌷

Liz Blakelands

@worried-_jay I think as you come up to the first anniversary you start to look back and can hardly believe what has happened. Also as active treatment has stopped you also have time to consider what has happened rather than reacting to the next part of your treatment plan.

I'm T3N0M0 the same as you and my 4th anniversary of diagnosis is on 13 February (I wasn't and am still not superstitious, it is a date). But that diagnosis of rectal cancer changed my life. I now think of things before BC (bowel cancer) and after BC. Some things I planned to do, I know I couldn't do now but I can still do a heck of a lot and life is good.

But I do think that for a time you almost grieve for what you have lost and come to terms with it. And it can be hard to say as people don't understand what you have lost emotional and physically as they see you as recovered and sometimes the very unhelpful response is 'at least you are alive'. If someone broke their arm and lost some mobility in the arm would the response be the same, I don't think so.

If you have difficulty getting counselling I would recommend a book previously recommended on this forum 'The Reality Slap' by Russ Harris. Some bits not for me but other bits really helpful and insightful.

Have a really great 50th birthday celebration doing what you and your family want to do, Cadbury's sounds wonderful.

Very best wishes
Liz :x::x:

Worried_Jay

Thank you @Lucy118 :x::x:

Wow what a story you have @Baxter2, I’ve just read your profile you’re a true inspiration to us all, your strength and determination :x::x:

Worried_Jay

Hi @Liz Blakelands its true while you are going through treatment etc and have constant contact with your team it’s like a safety net, then at my histology appointment I was given a sheet of my 5 year surveillance and waved off. I thought when I had my first 6 monthly CEA bloods taken it would be a follow up well-being appointment, it totally wasn’t the case. I still have my ‘temporary’ ileostomy still pretty much in limbo with it, my Consultant was keen for a reversal but can’t determine whether the Rectovaginal fistula has healed spontaneously? I had the water soluble contrast enema which showed no leaks but my Ileostomy wasn’t put in for that reason it was so the RVF could heal, so I’m no further on with it. I will take a look at that book thank you :x::x:

Mark McC

Hi @Worried_Jay

I was diagnosed in Nov 2020 and pretty much exactly 1 year later I had my ileostomy reversal which I saw as the end of my treatment, with my 1st anniversary (of tumour removal) colonoscopy and CT in March ,

I reflect everyday to some degree on the events of the last 14 months but I haven’t yet hit the emotional wall of the enormity of it all that people told me I would run into at some point.

I guess we’re all different in how, and when, the aftermath affects us.

Look after yourself

kas52

@Woried Jey it is normal, emosions , very high indeed from the same moment , when my husband had colonoscopy a d doctor after said it is cancer I just sad down because almost fainted, and it was friday so we cried all weekend. And then we started to thing what to do and when ....I never forget oncologist who wanted to lift our spirit up and said even is stage 4 after they found sinle metcin liver it is still curable.He was so nice to give as a power to start to fight.We are 3 years after , 1 higher anterior op and 2 liver resection, still hoping and oncologist still hoping we don't need to come for review. Willie is trying to swich off as much as he can and it is me who worried all the time . But whenever we sit at the front of oncologist I'm shaking .Willie will have another colonoscopy soon and I'm already thinking what will be after . I think that you getting a bit use to it but never stop emotional . Enjoy birthdays try not to thing about the monster❤

stevejl

hi @Worried_Jay hope you enjoy your trip for your birthday.I live a short distance from the safari park & although not New York it can be like the African Plains as sitting in my garden I can often hear the roars of the big cats & screaming visitors mainly from the fun fair I hasten to add rather than the lions lol.
I understand there is lots of chocolate on offer at cadburys visit from friends who have been.
it is good to get away as my wife is taking me away for a few days at the end of the month for our rearranged joint birthday trip as was postponed as my chemo started earlier than expected in 2021.
Enjoy.
:x::x::x::x:

Worried_Jay

Hi @Mark McC I’m glad that you’re doing well and have had your Ileostomy reversal, I think I’ll probably be the same if/when I eventually get my reversal it will give me some sort of closure, although it’s not really any bother :x::x:

Worried_Jay

Hi @kas52 i can relate to the Friday colonoscopy, I just came home and went to bed for the whole weekend, the worst weekend ever! It sounds like you and your husband have been through so much 🥲 it’s good that you have such a wonderful oncologist though that always helps with the dreaded, nerve wrecking appointments if you have an approachable consultant. Hope your husbands next colonoscopy goes smoothly :x::x:

BeccaHerb

Hi @Worried_Jay

Hope you’re doing well and enjoyed your family break.

I had my first counselling session this week and it was really helpful and felt good to talk about cancer with someone that doesn’t know me but knows and understands my situation.

The one really good thing that came out of the session was that what I’m feeling is completely normal, I was starting to think I might be losing the plot. She also reassured me that it does get better.

I would definitely recommend counselling if you can possibly get this.

Sending love and best wishes

Beck ❤️ :x::x::x:

Worried_Jay

Hi @BeccaHerb

I’m so glad that your counselling was really helpful.

I had a telephone consultation with my Doctor this week, it was a yearly follow up well-being call I had to complete a questionnaire text first before the call. I did state low mood and daily anxiety, during the call he just mentioned that I can contact Macmillan Nurses for this. To be honest I never heard from my assigned Macmillan Nurse during diagnosis when I was at my worst, the last time I saw one was when I was told I was now under the care of the living with and beyond cancer team, so not sure how I would even get counselling?

I’ll have to just carry on as I have I guess. So happy that it’s working for you though 😊:x::x:

Liz Blakelands

@Worried_Jay the counselling that I have seen recommended several times on the forum is Maggies and Penny Brohn . I think they have local centres and/or online centres. I know some of it can be accessed online and I found helpful.
All the best
Liz :x::x:

BeccaHerb

Hi @Worried_Jay

I asked my CNS nurse to refer me for counselling but if you’re now under another team I would definitely ask them to refer you and if they can’t then they should at least be able to signpost you in the right direction.

Please don’t feel alone in this, there is definitely counselling out there for all cancer patients. I’d be more than happy to try to help you find something, just let me know if you’d like any help.

Love Beck :x::x::x:

Worried_Jay

Thank you @BeccaHerb

It was world cancer day yesterday and our local hospital advertised on Facebook about services available from the Living With and Beyond Cancer Team, support that I didn’t even know or was told existed? There’s an email address that I’m going to contact them on :x::x:

Worried_Jay

Thank you @Liz Blakelands and @Lirio345

The 6 week counselling support from Macmillan was mentioned on my local hospitals Facebook post yesterday so this is something I’m definitely going to enquire about :x::x:

jupiter20

Hi @Worried_Jay - I am glad to hear you are doing better and looking at counselling. Must say I am in a very similar situation. I, too had my 'one year' anniversary quite recently (December 2020 was my surgery) and it's been a lot of mixed emotions and feelings since then. I still have a lot of anxiety about the future and, like you, have cancelled a foreign trip in the summer and instead will be going to Cornwall for a week with my partner. We also have a puppy now and it's taking my mind off things a bit. Been back to work full time although sometimes I feel that's a struggle too. One day at a time.

Worried_Jay

Hi @jupiter20 so happy to read that you’re doing ok and enjoying the new addition to your family. It’s strange isn’t it because in one way it feels like a lifetime ago but in another it feels like yesterday, it’s very surreal. When my GP called this week he said it was a well-being curtesy follow up call because of my cancer diagnosis. Sometimes it almost feels like they are talking about someone else when I hear those words, then it just brings it all back home and the reality kicks in, they’re actually talking about me :x::x: