Stage 4 bowel cancer

Catt79

So fed up with bowel team

Just wanted to have a bit of a rant about the ridiculously sub-standard service I get from my bowel team ☹️
Just done six months chemo and found it a really positive experience and was always treated amazingly. Now I'm back with the bowel team and waiting for surgery and I am so fed up and frustrated of being lied to. I have been told by three different nurses that they are my key nurse. Two of them had said they would phone me after MDT and neither did. MRI was requested by consultant two weeks ago and has still not been booked. The CT scan that picked up my recurrence was not looked at for five weeks back in August, at which point I got a phone call telling me the news.
I'm so frustrated about not being able to do anything. This op is supposed to take place 4-6 weeks after end of chemo and we're already at 2 weeks. After that, I have a liver op and I'm panicking that the length of time between that and the end of chemo will allow the liver met to start growing or spreading.
I wish so much I could afford to pay privately for treatment as it feels like the staff shortages/underfunding in the NHS are leading to levels of care which are actually dangerous ie. cancer could regrow before surgery.
I'm so fed up with it and would appreciate any advice or calming words :x::x::x::x::x:

Catt79

@bettebette I do need to find out who is my actual nurse as I had felt quite reassured when the previous one took charge, gave me her email etc, but now feel like I have no contact point to trust. I am wondering about contacting the surgeon's secretary and asking her to seek clarification as I just get told different things every time.

@berkshireboy99 I was so close to losing my s*** today 😁 I agree that half the battle is with the hospital and it's systems. Staff just don't seem to want to share how systems work or who to contact and how. It's a nightmare and I'm always worried about annoying the nurses/doctors and them then being awful to me from then on.
We are so dependent on them and it's so stressful having to put our trust in a system that repeatedly falls short 😔

bettebette

That sounds like a good idea @Catt79.
Xx
Sorry to hear you are still having problems @berkshireboy99.

Gypsy

Dear @Catt79 . I'm glad that you have got your scan date at least. Regarding the 5 week wait on the reporting of the recurrence scan, that same thing happened to me. I also waited 5 weeks and in that time, I kept calling and finally gave up assuming that no news was good news. After 5 weeks, phone calls began and then I was back in the loop quickly although it was 3 months before anything actually happened with the secondaries.
Feel for you lots. Love Gypsyxxx

Catt79

@Gypsy yes I too kept calling, being told by the person I spoke to that they would chase it and eventually, like you, assuming it must be fine, which meant the phone call was an even bigger shock.

It's terrible isn't it. I wish MPs had to use the NHS as I'm sure they'd soon start giving it the funding it needs to get back to an acceptable standard once they experienced some of the delays/ mistakes :x:

MrsMoors

Honestly private is no better now, we have had identical experiences to yourself and are private patients. Were being treated by the same drs in the Sam's qaa the only difference is free parking and possibly other chemo options

Lizalou

Hi @Catt79

I agree that it is so frustrating that everything takes so long, no sense of urgency, no acknowledgement that this is potentially life changing.

By the way, I have 2 named nurses and I wonder if, like you, that is part of the problem. I used to spend hours on the phone chasing admin staff, secretaries and anyone else who answered the phone, rather than waiting for a phone call to be returned.

(After one hysterical but fruitless phone call, my nurse suggested anti depressants......I told her I didn't know they cured cancer!)

mandajayne

oh its so frustrating isnt it!.. i have been chasing up appointments, results and help for the last 14 months now.. my hubbie was diagnosed last feb.. had to chase up treatment which was stage 3, but was stage 4 by the time he finished radio/chemo.. the tumour grew through the bowel wall into his bladder and prostate, which meant his only option was a total pelvic exenteration last november.. since then he has had major problems with a massive leak from an open wound.. but nobody seems to know what to do with him.. we are shoved from department to department.. now on a vac pump.. but he is going downhill all the time.. i have no keyworker to call.. just a pallitive nurse, who still cant get his pain relief right.. i have written to pals,, but no joy.. its just not good enough... i hope you get treated better soon :x:

GD62

very sorry to read about communication issues and it is frightening too.....hope you get it sorted good luck :x::x::x:

determinedjoan

Sooo soz to hear that your dear husband ‘s serious health problems have not yet been sorted out; how terribly stressful & difficult for u both. Thinking of u & sending love 💗, hugs 🤗 & healing vibes :x:

Catt79

@mandajayne that sounds horrendous. Your poor hubby and you too. Massive hugs. I hope his wound does heal soon and that your nurse manages to get his pain relief right so you can both move on from what sounds like a horrible situation :x::x::x::x:

jandals

Hi @Catt79 and @mandajayne If PALS are not responding you can also try going via the nhs complaints advocacy service if you ask the receptionist to give you the details of who does this for your hospital or dr surgery they should have it to hand. If they haven’t heard of them that shows a real concerning lack of understanding/competence that would be worth raising with the Care Quality Commission (sorry i keep banging on about this but people are not taken seriously and we have the right to be treated with respect and to understand the information we are given and if they can’t give info eg about scans then they should give a timeframe of when they can or explain more about the process) :x:

jandals

This website has a bit more info about advocacy and what it is etc. I think lots of people are not getting assessed under the care act with an advocate present (which you have a right to if you have substantial difficulty communicating and you don’t have someone who is able to actively support you in being involved in that assessment - which I think is a very big ask of any family member or friend to do so even if they are willing it would help you to say you don’t want to ask or or feel it is inappropriate to burden them and you want an advocate instead!) by the way regardless of your finances and whether you would be self funding your care if you have care and support needs you are entitled to a free care act assessment (carers are entitled to a separate one too) www.independentage.org/...aking-action/independent-advocacy
By the way substantial difficulty communicating has a low bar - it can be due to mental health, problems concentrating and retaining information etc as well as an impairment eg hearing vision speech or language or cognition problems.

george1960

That's crap treatment I hope things start to improve could you take them to one side a have a word might not work but your feeling better

Hugs George :x::x:

jamtart

@Catt79 feeling your frustration too. It seems I'm constantly emailing cns asking for information, asking questions, pushing for appointments.

belinda66

@jamtart

I'm the same, having learnt from experience that you have to push yourself as an NHS cancer patient. It shouldn't be like this when so seriously ill but that's the reality. I recently met someone who said the same: keep making phone calls, asking why nothing's happening and so on. Very unfair on those not confident or strong enough to push themselves.

jamtart

@belinda66 @Catt79 I wish I had pushed harder at times, hubby went 6 months last year with no treatment, it seems like we just fell off the radar. Same seems to be happening now, 5 months now since last chemo, which hasn't worked and suspect now they are going to say no more treatment to be offered. Trying to stay positive but head full of mince a lot of the time trying to make sense of it
Seeing onc next Tuesday 4April.

belinda66

Hi @jamtart - have answered you on other thread. I could kick myself for not pushing myself just before diagnosis and after - but then I remember how thin I'd got and the pain I was in and that it was impossible for me to push myself. Maybe you shouldn't be too hard on yourself - hindsight is a wonderful thing.
In the past I was an advocate (mental health) so knew importance of standing up to and challenging professionals but still couldn't do it for myself.

Six months without treatment for your husband does seem a long time. Sometimes it feels like we have been abandoned. Long waiting lists in an underfunded health service are a grim reality. One of my greatest fears is of becoming lost in the system, which did happen at the beginning in the original hospital I was treated at.

Now, you have to get as much information as you can to support your husband in whatever happens next. I hope others who have more knowledge than me here can advise you. You might need support for yourself too.

Catt79

@jamtart those waiting times sounds horrendous and unacceptable. I'm so sorry you and your husband have had to out up with that. @jandals had put a link to how to get an advocate to help push things and get fir information, so maybe have a look at that as it could help? It's so wrong the way we have to push for our own treatment when we are at our most vulnerable.
@belinda66 I hadn't realised how widespread this problem was. I can't believe it's not a news story when so many cancer patients are being left pretty much abandoned for unacceptably long periods. I too wish I'd chased my scan results last year more and that I'd demanded I was taken seriously when I complained about pain the year before(which turned out to be the regrown tumour), but I think we still have it in our heads to trust the professionals 😔 Unfortunately that doesn't seem to be the case anymore 😔 :x::x:

farahat

i would go to my GP and push him/her to fine out from the Hospital whats going on why the treatment is late if all fails

RosyPosy

Good grief, I thought for a minute you must be having the treatment at the Lister hospital in Stevenage, Hertfordshire. Then I looked at your profile and saw that you’re from Leeds. How shit is this treatment our people are getting on the NHS! I know there is a shortage of money in the NHS but why is there a lack of compassion and empathy towards some cancer patients during their diagnosis and treatment? More training is needed badly in the areas where they are failing to deliver.