Moving on from bowel cancer

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MysticLooRoll

Friends and what they say

Hi all,

Not posted for a while but I do still check in on things. Recovery has been going well - back at work, doing therapy and all in all, feeling good.

Just want to pick your collective brains about something. I haven’t had the best time when it comes to my friends (or people who I thought were friends) giving me support during this whole experience. They have gone one of several ways - either disappeared after saying “let me know if you need anything”, or proceeded to tell me unhelpful stories about folk who have died (!!) from cancer or ask me what I could/should have done to stop having cancer in the first place (like it was somehow my fault?!😳).

Anyway, I have been getting therapy and going to Maggies. This site and meeting others with cancer has helped me get through a lot of my issues. I thought I was doing much better about the friend thing until yesterday when talking with one of my oldest friends. I was explaining about the tests and stuff that come as part of the recovery and follow up process. And I said, quite calmly, that if the cancer comes back I will scream. His response was to tell me I can’t think like that, and not to get worked up over something that hasn’t happened yet. I snapped and told him that he has no right to tell me how to feel or think about my own experience with cancer, and that I was simply stating a fact. If it comes back (especially after everything I have been through) then I will (and I have the right to) scream. I wasn’t getting worked up. It’s like how folk say if they won the lottery they would do blah blah blah.

The whole chat yesterday made me think - am
I really expected not to be able to say how I feel about a possible recurrence? Or talk about my recovery honestly? Its like now treatment is done, folk think I should be the old version of me, and not talk about it. They don’t get that I have daily challenges (with diet, energy levels and bowel function) and I am not the same person now. They don’t want to hear the truth about my experience. I mean, I get it - no one wants to think about cancer or be reminded that this could happen to them. I never wanted it but here I am and I have to get on with it.

How do you all (especially those further down the road from me) deal with folk and friends treatment of you since having BC? I think I need better friends. I can’t possibly not talk about this stuff honestly. It’s been such a massive part of my life. Am I overreacting here?

Any thoughts?

Liz Blakelands

@MysticLooRoll There is nothing like being in a tough corner to find out who your friends really are. A lot of it is to do with them and some people are not very empathetic and when you really need them to be understanding that is when you discover they aren't. Some of my friends and family were brilliant and some were not.

I think that people who haven't had cancer or been close to someone who has had it, don't realise that once the active treatment is over the person is often left with life changing issues and very real anxiety about the return of the cancer.

I'm further along than you, over 4 years from diagnosis and 3 years from end of treatment, and I rarely talk about issues with friends now. With a couple of my closest friends I know I could talk about something that was bothering me but my oldest friend, 50 years plus, I can't. But we are still friends.

Having bowel cancer changed me, it is bound to, it is such a massive thing to have happened, but I think I am stronger now, I don't sweat the little things and get on and do the things I like with the people I enjoy being with.

I remember, years ago, a friend of mine who was in her 70's at the time, who did have a serious illness but very, very rarely spoke about it saying about her peers ' people spend all their time talking about what is wrong with them and then they wonder why no-one wants to see them'. Although that sounds a bit harsh May was the kindest person and she was speaking the truth.

That is the reason I find this forum so helpful. I can discuss things that matter to me with people who really understand what I am talking about. With my friends I rarely discuss any issues, as far as they are concerned it is in the past and actually that is the way I like it now.

Hope this helps in some way

All the best
Liz :x::x:

Mark McC

@MysticLooRoll i could have written that myself! There is definitely a “haven’t you moved on yet?”attitude from most people. I don’t know if it’s lack of appreciation/understanding of the physical/mental/emotional experiences I’ve had, and continue to have, sheer ignorance, not knowing how to approach it or not wanting to discuss it.

There’s a cursory, how are you ? But no one truly seems to want to understand and if I start explaining about it all they want to move the conversation on quickly. Then theres the genuine surprise about bowel changes, stamina levels, drugs and diet. The thought of reoccurrence is always there, there’s no moving on, just adapting to a new normal.

I’ve just had my first surveillance scans, colonoscopy ✅ blood CEA ✅ CT 🤔, they’ve seen a couple of spots on my liver so I’m off for an MRI. Naturally a bit concerning given the last 18 months. I mention it to a friend, and his reply was a cack handed “I’m sure it’ll be OK , stop wasting NHS funds, anyway I’m getting a round of golf in next week ….” , no good news on the colonoscopy but you must be a bit nervous you need an MRI or appreciation that I haven’t swung a club for 18 months. There are other examples going all the way back to diagnosis.

Don’t get me wrong, I don’t want cancer to define who I am or for it to be the only topic, and I don’t want sympathy either, or for people to change their lives because of what I’ve been through. But it’s not too much to ask for a bit of basic human understanding that things are different, is it? It’s the old walk a mile in my shoes that’s missing.

Fully get where you’re coming from. I’ve had counselling with bluespace, and am trying to adopt a I don’t care what they think attitude, but it is difficult , especially with long standing acquaintancies.

Don’t know what else to say other than you’re not alone.

jennylm54

Hi @MysticLooRoll I also could have written this myself! Like you I’ve had some fabulous supportive friends and then friends who have been really dismissive and literally told me that it’s time to “move on”
I’m still struggling to deal with some of these responses, but have put ti down to the fact that people just don’t understand the impact a cancer diagnosis has on you.

I have also been going to Maggies and have found their “Where now?” course to be really helpful. Just spending time with a group of people who knew exactly how I was feeling and were able to listen, share their experiences and understand was really powerful. We plan to carry on meeting as a group now the course has finished and I feel that will be a real chance to keep the understanding and support.

Hope that helps in some way.
Take care
Jenny :x::x::x:

stevejl

Hi @MysticLooRoll yep experienced a lot of these comments myself as the only people who really understand what you are going through have been or unfortunately are going through it.
As I have had to say to a number of well meaning people, you may have seen the adverts on TV but when I heard those word"I am sorry to tell you you have Cancer" only then did I realise what a life changing experience those words would cause me.
Great to hear you are recovering well & are feeling good.
take care
:x::x::x::x::x:

skyetripper

Hi @MysticLooRoll. Fully agree with the comments from others above and my only suggestion is to try to not let the odd careless word from friends get in the way of the support you need from those around you.

My personal pet hate is when people enthusiastically tell you about a person they know of who was given months to live but has defied the odds and is back running marathons. I appreciate people are trying to be positive but it tends to make me feel like I will have ‘failed’ if I don’t beat this.

Having said that, maybe I’m just lucky, but all of my friends, family and neighbours have been great with my diagnosis. I fully understand when they maybe say the wrong thing - it can be very difficult for them too. As already mentioned, no one really knows what it’s like to have cancer apart from those who have it, and even then it’s a very different experience for everyone.

Take care, Alan

MysticLooRoll

To all who have replied/messaged me - thank you. I thought I was going nuts or overreacting here. This shows I am not alone ☺️

@Liz Blakelands - yep, you are bang on. I have learned exactly who I can (and can’t) rely on. That has been as much of a shock as the cancer, in some ways.

@Mark McC - exactly! I keep getting comments on the lines of “oh, you are fine now. Just move on”. Just because I look fine, that doesn’t mean I am fine. Much as I am trying to get on with things, I would be lying if I said I didn’t worry about recurrence. I won’t relax until I get a clear CT scan and bloods. I wish you all the best with your MRI and will keep my fingers crossed for you. 🤞

@jennylm54 - like you, I’ve been doing the Maggie’s “Where Now?” Course. It has been really helpful. I am hoping to keep in touch with a few folk from it, but even if I don’t then that’s ok. It’s been good to just be able to talk in a safe space with folk who have gone through treatment.

@stevejl - thank you for understanding and your kind wishes. I hope you are also doing well :x:

@skyetripper - I do try not to let the careless comments get to me. Therapy has helped, and being able to chat here and at Maggie’s has, too.

I was only diagnosed with BC in July 2021, so I know I’m early in my recovery. I am the only one of my peers who has ever had cancer, so I know it’s scary for them. I don’t talk about my illness/recovery all the time, but do expect when I am talking about it, to be listened to. I don’t want to hide things or pretend that I’m doing well, when I don’t feel that way every day. I guess I hoped for more compassion and understanding, especially from my oldest friend.

Thanks all. :x::x:

MrADW

Hi @MysticLooRoll

I'm not on very often at the moment, but I know exactly what you mean. Having cancer has shown me and my wife who is "worth it" when it comes to caring. We have a very small group of friends who have been wonderful. The others? Disappointingly have disappeared from view, probably unlikely to return. Family have been even worse; my father ran for the hills, my in-laws have moved away, leaving my wife to deal with everything. She has been marvelous, my rock.

I've found the people I've met through this forum to be great in supporting us. Wonderful people.

As others have said, you don't appreciate cancer and its impact until you go through it. But, by crikey, some people just don't get it at all!

Take care of yourself.
Alan

colourmesurprised

Hi, @MysticLooRoll , I remember your posts as I think we share a similar timeline. Much of what you say regarding friends' comments resonates with me. I go to therapy too and it is wonderful to have that safe space where I can say literally anything and not be judged. I think cancer terrifies most people, that and ignorance of the true medical facts can lead to some clumsy comments. I tend to "vote with my feet" and stay away from those who cannot contribute in a helpful fashion.

I'm being investigated for possible complications but few people know this yet and I think they expect me to move on and not raise the awkward subject. I look and feel good right now, so I accept it’s hard for people to think of me as being ill. I have two really lovely supportive friends and my husband and children to support and love me. I’m grateful for that.

Do keep posting here if it helps. Best wishes, :x:.

Liz Blakelands

@MysticLooRoll You are so right that cancer is scary both for yourself, your friends and family. And it is why some people re-act the way they do. Doesn't excuse it, but helps to explain it.

With your oldest friend I suspect that they are not a good listener meaning that as you started to speak they were already getting ready with their response, instead of really listening to what you said and then reacting to that.

I discovered one of my sisters didn't listen to a word I said, just trotted out a response, and when I realised that it was a massive disappointment. Another of cancer's lessons. Stick with the people who do understand.

Overtime I find I'm becoming more duck like, it's just water off my back.

Hang in there
Liz :x::x:

stevejl

Hi @MysticLooRoll
Am doing good thank you my BC is currently clear so just on surveillance at the mo.:)
Just on the daily rollercoaster emotionally/mentally as most of us are.B-)
Take care
:x::x::x::x:

divvykev

@MysticLooRoll
I was talking to my Dietitian the other day and he said something that got me quite emotional. We were discussing my stoma and taking more risks with what I eat (four months post APR and permanent stoma op) but he added the line "But of course, I know the theory but as I have not had a stoma I have no idea what it is really like". The first "professional" to say this to me.
Totally get you with the other stuff. "Just stay positive" etc etc and "Onwards to a new life" since I had the all clear. I will either just nod and smile or come back with a "Try it" in my head but still a grin for them.
In a way I am glad the "normals" don't understand what it's like to have cancer but I just wish more of them would just bloody think before speaking. :-/

hev

@MysticLooRoll
Omg totally get what you say
I think we all react to diagnosis of friends/family with cancer in same way “ let me know if you need anything “
I agree as much as we all want to return to normal the realism is everything changes forever but we all deal with our own situations in way best for us!
I’ve had to stop many people from their stories of people who recovered from cancer but also I’ve been told of stories of worst outcome
I think often the good stories are way of saying “look you can beat this as my friend did “
Stories depend on how YOU are feeling at thst time- I can often take the stories but often I cannot do I must admit I speak up
No one can understand what we are going through and I love the saying which crops up often in this forum-( until you have walked in my shoes)
You have every right to say how you feel- why is it any different for us to want to speak about our condition-
I do think often in all good intentions it’s not understood that after treatment things don’t go back to normal for us like it does with other diagnosis
So keep speaking up and if not listened to in nice way find another person who will listen-that's when I’ve turned to this forum as we don’t need to explain in detail how we feel cause we already know
Good luck
Hev

MysticLooRoll

@MrADW and @Liz Blakelands and @colourmesurprised - Thank you all . I guess I am having a harder time accepting that some folk will never “get it”! It’s hard, especially when those folk have been friends for a long time. New friends are definitely needed and the last few months have made me re-evaluate who is and isn’t good to have around…. Hopefully in time I will have that water off a duck’s back attitude, but I suspect that’s a way off.

@stevejl - glad to hear you are doing well. Keep on keeping on! 👍🏻

@divvykev and @hev - oh, if only they would think before speaking! The main thing is my friend knows what I think as I told him straight off. I am just tired of having to explain myself over and over and people being surprised when I say I am still recovering. I keep thinking - if I had just had a child, no-one would be thinking it was unreasonable if I wanted to talk about the kid 👀
Why should cancer and recovery be any different?

Right folks, I am going to call it a night. Thank you all for your input. It’s nice to know I can come here and you all get it!

Take care all,

MLR :x:

freyaburmesejanet

I’m a wife not a patient, but have really struggled with lots of people. I suppose it’s partly due to the success of the BC screening programme that people feel so free to assume that OH was diagnosed via the programme and at stage 1 with excellent prognosis and don’t understand why I’m finding things so emotionally difficult. Oh, BC is eminently survivable, they say. Or, if he’s going to have cancer, BC is the best to have!!!! I feel myself screaming inside at the thoughtlessness of this.

The other thing is that I’ve lost track of the times I’ve been told ‘to be positive’. I’ve started being a bit aggressive about this one. I ask them ‘why’, and let them know that I don’t need anything else to beat myself up about, that I find it an unhelpful comment, but I can see how me being positive makes life more comfortable for them.

Having said this, I have a few fantastic friends who will listen to my fears and worries without telling me how they think I ought to feel. I value them enormously.

Bobs74

This thread has made me feel really emotional as I relate to it enormously. Nothing more to say really aside from - I hear you :x::x:

hev

@freyaburmesejanet
I had conversation with good friend just last week which was exactly what you say
Looking back on past conversations I’ve had when told of friends diagnosis is you want to give a “good outcome story “
I have done just this so often- I won’t in future as being in different position now there are times whatever mood I am in where I just want to scream SHUT UP I DONT WANT YOUR PITY STORIES!! I often feel bad after but I now tell people that I don’t want to hear stories at that time but another time I might
It’s very hard for your family whose supporting you- I deal with things in my own way so very much at beg of diagnosis I didn’t want to share anything until I was ready
Our family and friends are so important to us with Cancers but we also need to be understood at these times-everyone out there in this forum whether living with BC or supporting -keep going :x::x: