Does anyone follow Deborah James? (AKA Bowel Babe)

[NoWigNoWit]

www.instagram.com/bowelbabe/p/CYr47RBoWRv/?utm_medium=share_sheet

I’ve been following her for a few years now and this is her latest update. She’s such an incredible and inspirational woman.

I don’t know her whatsoever but it’s made feel sad reading this and I have everything crossed for her she makes a speedy recovery.

(Not sure if this will link!)

Yes, @Floundery - it sounds very, very similar. There was a passivity about her care that still feels so distressing, and a world away from the treatment options DJ has described and received. Including the pain she went through.

@Schnauzerwowzer - it's not about her 'showing off', I am completely indifferent to how anyone presents themselves or their physical health on social media and indeed, kudos to her for having the presence of mind and motivation to do so. It's simply, on a personal level, a painful reminder that had my friend had such treatment options she'd have had a longer life, and a less painful, traumatic and essentially under-resourced care pathway. I don't think DJ is breaking any taboos, tbh, as there's a much bleaker flip side to the coin she presents, and that's the real taboo.

There was also a very new kind of radiotherapy she had and I strongly suspect the drugs she had which kept her cancer free for a good time and had literally just come to the end of a trial were also paid for by the insurance company. And why not? She’s a young woman with a young family and has managed to extend her life with them, probably quite significantly

I have no issue with her promotions etc. she’s clearly a very driven woman and was a highly successful teacher and very ambitious, she has only channeled that energy in a different way.

A diagnosis of cancer is brutally unfair in any circumstances. But the stark reminder of the lack of equal access to life-prolonging treatments means those of us who have watched loved ones dying with no real intervention may struggle to be as empathetic as we could or should be.

I'm so sorry for your loss, @Floundery - and for those of everyone else on here whose family or friends have died from or are suffering with cancer.

@swordfish05

A diagnosis of cancer is brutally unfair in any circumstances. But the stark reminder of the lack of equal access to life-prolonging treatments means those of us who have watched loved ones dying with no real intervention may struggle to be as empathetic as we could or should be.

I'm so sorry for your loss, @Floundery - and for those of everyone else on here whose family or friends have died from or are suffering with cancer.

Completely agree

I haven't really followed DJ although I know who she is, and can't imagine how difficult it must be to be in that situation. I know lots of people are, and maybe she is more fortunate than many from a financial/treatment perspective.
On a separate note my Dad had cancer for the last 5 years of his life. When he was first diagnosed he was in hospital for about 3 months. For several weeks of that he was in a private room in a London hospital. The actual treatment AFAIK was whatever the standard NHS treatment is, but his room and menu choices were the same as private patients.

Its my view cancer treatment in such a young person warrants all the stops pulled out and in the hosp i work in the treatment options are the same UNLESS for yet unlicensed treatments which needs signing off by dept of health hierarchy. There is NO difference in care in fact the public care is amazing. I do thing how ever her being so high profile does make her medical team more motivated perhaps ?? Dunno.
She gives hope to so many with terrible life limiting diagnoses so hey i think thats fab. I do think her amount of followers must be added pressure on her to perform for insta even though she feels rubbish !!! Like its too much on her . At first it was probably fun being a s media star now its the opposite in reality .

@Radyward if you’re in England the care just isn’t the same when you get to advanced cancer. Often you’ll get access to drugs and more agressive or experimental treatment. You can also move hospitals easily, get appointments with mates of the specialists across the world and have drugs which might be limited by postcode lotteries. It might not be the case if you’re treated in your local cancer hospital but trust me, if you’re at the Marsden, the Christie, the London clinic, you’ve A much better chance of having access to a far wider range of treatments. Not only that you get things done faster. Scans are done more regularly, results are delivered more quickly - we usually got them within 24 hours and often within a couple of Hours. Once they identified a problem MRI’s and CAT / PET scans could be done almost immediately, once within half an hour. All appointments are with the consultant. Don’t like that consultant, so change. You have the consultants email and mobile number. Message him oh a Sunday afternoon? Answer within minutes. I’m afraid it’s just not the same. Appreciate for early cancers it might be but once you’re advanced it’s a whole different ball game.

@Floundery yes. DH had cyberknife. They also treated more spots of cancer woth it than NHS allowed. He remained cancer free for another 6 months and had virtually no side effects. I think DJ had nano Knife or something really new I hadn’t heard of and I was pretty up on the radio options are one point

Is cancer care covered by most health insurance or do people pay per treatment?

Deborah is a tireless campaigner for people affected by bowel cancer, particularly young people. The clinical trial she was on at the Marsden went on to become available across the NHS for the rare and aggressive BRAF v600e cancer she has. Her participation and feedback in the trial, her newspaper column, and work on shows like Panorama and her podcast, all help to educate, extend and save lives. She should be celebrated and supported in what she does.

Its my view cancer treatment in such a young person warrants all the stops pulled out and in the hosp i work in the treatment options are the same UNLESS for yet unlicensed treatments which needs signing off by dept of health hierarchy. There is NO difference in care in fact the public care is amazing. I do thing how ever her being so high profile does make her medical team more motivated perhaps ??

I think this is the case for primary cancer, but for secondary cancer, options often have to be really fought for. Patients have to find their own clinical trials, have to pay for second opinions to get their foot in the door for specialist treatment away from their own hospitals, and as PP said its a total postcode lottery and depends where you are being treated.

DJ has absolutely had way more options that the vast majority of Stage 4 cancer patients, including Rachael Bland who she did the podcast with. Because she has paid for them.

@Luckygreenduck yes most insurance policies pay for the treatment. Ours covered every penny we had no additional costs at all

@Luckygreenduck

Is cancer care covered by most health insurance or do people pay per treatment?

You can get cancer treatment on some kinds of health insurance, but I imagine DJ is at the stage of paying per treatment now, either that or she is paying a huge premium.

Like I said, I don't begrudge her it for a second, but I think she could have been more open about it to highlight the disparities. Although then maybe she was worried people would think she was rubbing their noses in it if she always referred to being a private patient?

@Omicrone I expect she’s on her husbands work policy in which case she will still be covered. He’s a big cheese in banking. My DH company immediately upgraded him to the top
Policy on diagnosis and it would have covered us indefinitely

My friend died of BC 3 years ago. On the NHS. It was devastating but I don’t resent DJ as actually if my friend had sought treatment sooner she may still be alive. Anyone who can raise that awareness and has the strength to do so should be applauded IMO .

@Floundery

The problem (especially with women) is not presenting late with symptoms, it's having those symptoms taken seriously by GP's when you seek help as a younger person.

Most people are aware of the main symptoms of bowel cancer. I suspect very few are aware of how intransigent GP's can be when presented with someone under 50 with bowel cancer symptoms. Or how few of them are aware that there has been an increase in incidence of bowel cancer in this age group of 50% since the 1990's.

DJ herself had to go private to get diagnosed. This is the campaign-worthy issue, imo.

Yes, it's a really terrible issue actually. So many of the young women with bowel cancer on social media had their symptoms ignored and are now stage 4 or have died. It's awful. I also know of a real life situation with a woman under 40 where this happened and when she finally got diagnosed she died within 6 months.

And when these women talk about what their symptoms were, I just cannot believe that they were shrugged off by doctors.

There is definitely a debate to be had on availability of cancer treatment to all - I haven’t followed closely but i do remember her talking about signing up to a BUPA teacher offer when she got her first job on the You, Me and the Big C podcast, and I think some of her treatment has also been on a clinical trial.

She’s not disingenuous thanking the NHS though - it sounds like she was admitted via A&E which would have been NHS and for sure the majority of doctors, nurses and other HCPs treating her will have been NHS trained.