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Beating Bowel Cancer Community

Younger people with bowel cancer

sophia

New to the community

Hi all

I was diagnosed with stage IV bowel cancer just before Xmas. Looks like it’s metastised to lymph nodes and omentum and possibly lungs. I’ve been told it’s not curable so I’m on chemo I’ve had a right hemicolectomy where there removed the entire primary tumour. Now two chemo sessions down and 4 to go before next ct.

I’m 31 years old and to be honest I’m not coping with it as well as I had hoped I would. Initially I was ready to fight and crack on with the chemo but knowing it’s incurable I’m struggling to find the reason to do it. Before diagnosis I was an independent person living in london I loved going to work and had a great social life. I’m still
living in my shared house, my housemates have been amazing but I’m really crashing at the moment.

I think I’m driving my poor brother and parents mad because they want me to fight and carry on with the treatment so much but I am at such a low point at the moment I can’t seem to find the fight in me to do it.

I’ve been told I should speak to someone but I don’t think I would respond well to counselling. That being said maybe i should talk to someone or at least give it a try. Not sure if anyone can recommend something?

Sorry for the long message. All the uncertainty and shock has really knocked me for six and I’m really disappointed in how weak I’m being.

sweetcheeks

@sophia , I’m not sure their is much I can say , other than I’m so sorry you have had to join us , I wish nobody ever had to go through this let alone someone as young as you , Go through our profiles especially young people section , yes you will find some hard to read posts but you will also see courage , humour and some bleddy amazing people ,
Sending you lots of love
Tracey
:x::x::x::x::x:

Chris82

Hi @sophia and welcome. I was diagnosed three years ago at 32 and given a similar message. It is very hard but treatment has definitely been ‘worth it’ for me as I’ve done so much in the past few years while on treatment and am still going.

I have spoken to a counsellor a few times, but not regularly. I am also south London based and people have recommended Paul’s Cancer Centre in Clapham Junction before.

You might also want to check out Shine Cancer Support, which specialises in our age group. There’s a closed Facebook group that a lot of us are also part of, and regular London social events. There are a couple planned in February around King’s Cross I think.

sophia

Hi all

Thank you so much for all your lovely messages it’s really helped. I will certainly look into some of the places you recommend.

Wren17

Hi@sophie welcome to the forum. It’s not been very like long since you’re diagnosis and so things are pretty much going to at the low end but hopefully with some time things will start to pick up for you :x::x:

Caraeliz24

@sophia hello and welcome to the community! You’ll find a great deal of support on here, just throw it out there. It can take tome sometimes coming round to talking to someone.
@Chris82 has already mentioned but Shine Cancer Support are a great charity - for a Facebook group and check out their website. Support young adults with cancer - have regularly social meetups.
I have coped fairly well throughout my treatment but like you have always wonder if I would gain from talking to a counsellor. I’ve just been on the great escape with Shine and it has definitely given me more confidence to seek that kind of help if I need it.
Maggies centres I’ve been told are quite good- sometimes just making that first step can be difficult, dip your toe in see if it’s for you whatever it is.
Hope things are going okay with chemo.
Also are you on Twitter - there’s a great community on there and I’ve met some amazing people who are now friends.
Cara

HH79

Hi @sophia so sorry to hear on your diagnosis. Stage 4 isn’t what it used to be ? ! still hideous to hear especially when young but many amazing profiles you can read on here? BearG, Chris82 also look at @Pitstop @Buzylizzy @blueorchid.
Defo try counselling? Check out what services your local hospice offer? I’m young like you and hospice is fab for ‘pampering’ px and their families? Your family will also get free counselling etc. I go and also have Pilates and reflexology. Lots of us take anti depressants I find help keep me level thro horrible times scans and all the chemo can make you feel low too. Take sleep aids for steroid days too. Also you should get free self refer counselling and CBT is really good?? And I think a book ‘the anti cancer diet’ is really good/accessible tips. Plan nice things to do and look forward to as well eg Cinema trip, a walk with good friends etc only see people who are good company / support!! And are you on Facebook? Ask to join ‘Shine’ a young persons cancer group with all cancers, lots of meet ups etc esp London way. Lots hugs to you and look forward to first scan showing cancer taken a kick in. There’s lots of tales people not operable who become so after chemo and never lose hope. Take care :x::x:

sophia

Thanks @HH79 for your lovely message. I feel in much better spirits at the moment and I’m ready to give this treatment a good go. I was struggling before to see what the point was but as you say I’ve done some wonderful things with friends over the last few weeks and I’m off to Bruges on Thursday for the weekend.
Work have been amazing and they want me back in whatever capacity I can manage which is fab.
I’ve also changed hospitals. I had such a bad experience at my last place. I found out I had advanced cancer unexpectedly by a junior doctor and I was on my own. I thought I had a ulcer or something! I had to then break the news to my Mum Dad and brother. It was all so traumatic that I think everything got on top of me.
Anyway new hospital (much closer to home (thank god) I’m now just hoping this treatment will do some good. This forum is amazing though. I’m constantly reading such positivity from people and if you can all do it then surely I can too!!!!
Thanks once again to everyone

lizziejane

Hi Sophia

I only joined the group over the weekend but already have found comfort and positivity and a lovely welcome from all even though we don’t deserve to be here. Try and stay as strong and as positive as you can. Sending you love 💕 and :x::x::x:

Bridget55

Hi @sophia. Welcome to the forum. I too am on my own and it does seem that but harder. Have a look at my patient story. The thing to cling on to is that treatments are advancing all the time. Sounds like you are already a fighter by pushing for a change in team. Think positive thoughts. One tip from me is that during chemo tell yourself that the chemo is attacking the bad cells and preserving the good ones. Think those thoughts when you are in that chemo chair. It’s early days for you. I’m suffering from ptsd and doing a mindfulness / meditation course run by the local oncology physchologist which is really helping. During my journey rhe oncology pyhschologist really helped and was a safe place where I could really discuss how I felt. Bridget :x::x::x:

mem

Another 'Hello' and a warm welcome from me too @Sophie 😊 :x::x:

jinnyp

@sophia
Hello and welcome from another Stage 4 incurable, albeit a bit longer in the tooth than you!
It is a horrible shock and everything you are feeling is completely normal - it's a b*sta*d disease and indiscriminate in who it touches. I was diagnosed at the end of last summer and can remember feeling a lot of what you are feeling now - 'incurable' sends so many negative messages when you first hear it but I have a more balanced view of it now after talking to many people in the same boat who are getting on with treatment and life. It is doable, I have had a good response to chemo and am hoping for liver resection surgery as my multiple mets there have shrunk so am hopeful that my outlook may become a little less uncertain.

This is a great place to come for support, there are many close to your age who can give you their unique take on things and lots of inspirational people who can advise, hold your hand and just walk with you when you need them too.
I have gained immense support just from knowing that I am not alone and that others have experienced similar in terms of treatment/side effects and just getting through the fear and uncertainty that we all feel at times.

I think there is a place for counselling and I am planning to look into it - it's hard to be really honest how we feel to loved ones and in the past I have found it to be really helpful with other issues.

I tend to ramble at the moment, sorry - not enough sleep :D
Just wanted to check in and say Hi
Take care
Jane :x::x::x:

Caraeliz24

@sophia I know helen has mentioned it, but I really recommend shine! all the people are awesome, I was always sceptical about joining such groups but it has been so beneficial to me. They do a weekend away called Shine escape every year as well and it's been one of the best decision I made to apply to it and go. I've made great friends and have support from people who know what it is like.
The first part of treatment can be the most difficult, you are still processing what is happening and getting to find your feet but things do become a bit more routine.
Glad to hear your feeling better, I'm based in London, Queens Park way so if you ever just want a cuppa and a chat I'm around!
You can do this, just be kind to yourself and if you need help then get some. No harm in trying counselling or a therapy group.
:x::x:

sophia

Hi @jinnyp

thank you for your message. Yeah it’s not great. I think what’s frustrating to is nothing is working in my favour. Spread in lungs liver and perotenum albeit all in a small way at the moment. I’m beginning to sense though that if the chemo works then maybe it’s not that much of an issue. I don’t know. I have the braf mutation too but my oncologist is changing up my treatment plan to deal with this.
On a positive note I’ve been told I’m making associate at work today. I was so pleased I nearly burst into tears. Just wish I could be here more to crack on and make partner but I’ll take associate and they are more than happy for me to be in part time or whenever I like. It’s nice to get some good news! And non cancer related news!!!!
:x::x::x:

sophia

Hi @Caraeliz24 i would be keen to look into shine. To be honest I’m so busy at the moment with seeing friends and doing things and keeping distracted that time seems to run away with me. It would be good to meet more people like me though. I really feel like I’ve turned a corner since my first message. Don’t get me wrong it’s still shit and I still wish I was just plodding along like I was a few months ago but I know everyone on this forum wishes the same. Thank you so much for your message though. A coffee and chat would be cool some timeXxx

Bridget55

Hi @sophia Congrats on that news. See my update above in relation to HIPEC - its in my patient story which are listed in the patient story section. It may not be suitable but don't leave any stone unturned and forearmed is a better position to be in - happy to answer any question on it as I'm sure others are on the forum - in the meantime fantastic news for you and enjoy getting out and about :x::x:

Caraeliz24

@sophia congrats on the Promo to associate. Lovely to have some good news hey. I'm glad to hear that you are feeling better with it. Yes anytime you fancy a coffee or Vino either way just shout - I'm on Fbook as Cara Hoofe if that's easier as well.

sophia

Hi @Bridget55. I have looked into HIPEC. I think The chemo needs to shrink the cancer everywhere else first before they will consider me but at the end of my rounds I will review and see what my options are. The main area of spread is the peritoneum. I think it’s only Marginally on lungs and liver so let’s see. Finger crossed for some positive outcomes. :x:

Bridget55

Hi @sophia that was my situation re piroteneum. Perhaps something to ask your oncologist at your next review. Everything crossed for you, as per previous post my top tip is to think positive thoughts re chemo it is destroying the cancer cells and preserving the good ones. Take care xx Bridget

sophia

I’ll take that on board and try to keep as positive as I’ve been feeling this last week. @Bridget55 :x:

jinnyp

Hi @sophia that's great news about promotions at work, it makes so much difference when work are supportive. I haven't really been back apart from to visit since I started chemo but they have been great and are very keen to be accommodating. It takes that bit of pressure off which helps.
I have found the chemo to be a positive experience, yes, I have some side effects that are a pain but it is working and I see it as a way of hopefully getting into a position where there is a chance (however small) that it could be cured. I am realistic that it is small but some of us have to be on the good side and beat this and I fully intend to be there if I have anything to do with it :)
I had a nodule on my peritoneum which had disappeared, one on my lung which they think isn't cancer related and I had loads in my liver which have shrunk by around 50% after 6 chemo cycles with Cetuximab - I have a PET scan before they make the final decision re surgery but if it doesn't happen this time I am hopeful that it can in the future.
Enjoy getting out, seeing friends and doing as many non cancer related things as you want to - I find that just doing normal things as much as i can help to level me.
Take good care, Jane :x::x::x: