Stage 4 bowel cancer

You can find information about advanced bowel cancer on our website, including our Treating advanced bowel cancer booklet. You can also join our Living with stage 4 bowel cancer Facebook group.

Jomo9

Media Attention

I was diagnosed with stage 3 cancer in July 2018. Since then I’ve had two types of chemo x16, immuno x23, right colectomy, emergency ileostomy and been in hospital numerous times with chemo/immuno reactions, I have been falsely told I was negative and falsely told I was positive so had plenty of highs and lows. Today I am NED (after being told the cancer was back in April) and on 39 pills a day. Am awaiting a stoma reversal. As this is a safe space I want to say that seeing DJ every time I open a media website is making me feel suicidal. I am passionate about raising money for charity and supporting the improvement of cancer services, indeed my Nivolumab was not even being trialled when I received it, which might explain all my painful urinary issues! However, DJ showing me how I am going to look when I am sick, or continuously going on about the last thing she is doing before she dies takes no account of the emotional state of hundreds of patients and family who don’t want to visualise it. There is no safe space for us and it’s made me realise that I would rather take charge of my own life.

Cruella

How are you getting these notifications about her? I have to go looking, what have you liked or joined that is popping them up?

colourmesurprised

Well said, @Jomo9 , I agree, it is hard to avoid and very prevalent in the tabloid press. I’m afraid the media loves a story like this and will not let it go. Sorry for your upset. :x:

HH79

Hi @Jomo9 - difficult one and understand how some will feel but there as many (or more?!) finding huge comfort in what DJ is sharing. One IG blogger (not bowel cancer) said for each post she’s doing and sharing about what she’s going through especially the emotional side ‘scores of others breathe more easily’ as they can feel ‘Ok, what I’m feeling is the same as…’ versus isolated and alone. It also helps partners / families understand what’s in S4/EoL heads and I think she’s being incredibly brave in the details shared, the anger felt about it all. That said, yes it’s hard to see her looking different but also for those going through the same, some will look away and someone else will say, wow, she’s looking amazing, I’m going to get dressed, make up and sit in a pub garden today etc. I hope this reads ok and do understand - my sister had been having panic attacks fire up the same time the media started and we both know we - same for you - need to be incredibly disciplined when scrolling news NOT to click on and read. That’s all we can do. I’m sorry you’ve had suicidal feelings though and hope you can get support on this asap - can you? Friends/family, GP? Helen :x::x:

bettyb1987

Hi @Jomo9 I think Helen's given a great answer but I just wanted to pop on here and send some love your way. I'm sad to read that this is making you feel suicidal and I really hope that friends and family can offer you some support, or perhaps it might be worth a call to Macmillan or your nurses to have a chat about how you are feeling? I very much doubt you are alone in feeling this way, although as per Helen I do think there are also others who can relate to DJ and feel less alone.

Just remember your feelings are valid and I hope you can get some support to help.

Betty :x::x::x:

Jomo9

@Cruella @colourmesurprised @HH79 @bettyb1987 thankyou all for your support and comments. I was having a very bad evening as I have a reversal operation this week and am scared about the pain and recovery process. I am also concerned that it will go wrong; last time the right hemi colectomy.resulted in five days ICU and a month in hospital. I do agree that there are definitely two sides to the media attention and the money raised for charity is phenomenal. I didn’t think about it encouraging people to get up and get dressed for the day, but that is a really valid point. I have pushed everyone away as it’s now four years since my diagnosis and it feels like a life time. My sister has also got very anxious as no-one knows how long my NED will actually last. I guess that those of us who do feel emotional should stay off all forms of online media for a while.

Titanicgirl

Hi @Jomo9 ! I am so sorry to hear you are depressed. What you're going through is seriously tough. And yes, sometimes I get a bit snarky as well with the media attention. There are days when I think, 'oh right, so I've got cancer and now people think I have to be a fundraising superhero as well???? Dang. Best get me hair done, then....' My trigger tends to be cancer fundraising ads on the telly, which pop up during a nice episode of Endeavor to remind me I've got cancer (my last scan was clear, but I'm not an idiot. I know the Beast is probably still there). I wish I could sit next to you and say "yeah, mate, with you on that." But I can't, so I'll send loads of positive thoughts and love your way and hope all goes well for you. :x::x::x:

louise28

hi @Jomo9 this is so so tricky and I know how hard this whole life is. I've v mixed feelings too. I am full of admiration for DJ and many other cancer activists etc. That she has such a profile is briliant because, let's face it, if a few people who see her go to the GP or push for a diagnosis, I can see this changing the conversation. At the same time, it is hard.... like @Titanicgirl it is also fine to feel like you're just about surviving. It can be hard enough just dealing with treatment, scans, blood tests and trying to keep your normal life going, to think about anything else. I try and take breaks from social media....and that helps sometimes. Wish you luck with what's ahead and I hope you stay clear.
If you are feeling suicidal, please do talk to someone. :x::x::x:

Titanicgirl
Quote from @louise28:
hi @Jomo9 this is so so tricky and I know how hard this whole life is. I've v mixed feelings too. I am full of admiration for DJ and many other cancer activists etc. That she has such a profile is briliant because, let's face it, if a few people who see her go to the GP or push for a diagnosis, I can see this changing the conversation. At the same time, it is hard.... like @Titanicgirl it is also fine to feel like you're just about surviving. It can be hard enough just dealing with treatment, scans, blood tests and trying to keep your normal life going, to think about anything else. I try and take breaks from social media....and that helps sometimes. Wish you luck with what's ahead and I hope you stay clear.
If you are feeling suicidal, please do talk to someone.

Just want to come in here and agree with @louise28, when you are down, please talk to someone - it really helps.