just need to rant...

yeragain65. I'm SO sorry! I am speechless actually. This is simply disgusting!

You said;
"that the different agencies, i.e. oncology and or surgeons haven't spoken since 2017 when I was due for a certain procedure, which somehow didn't happen making my situation so much worse."
I think you must complain about this to PALS. Please do not let is pass. I did not encourage my friend to follow up or complain about how his referral to the Scan unit was delayed because a Nurse who promised to take his card there did not do it. There was a huge delay. He had prostate cancer. When eventually the scans were done, it was too late for him to have curative treatment.
Please, whatever they do about your appointment, write a letter documenting this terrible failure to give you a procedure you were due, and send it as a complaint to PALS.
I shall be praying for you especially Monday when you phone. Lots of love

thank you.
at each oncology meeting I would say when will the procedure be done, it was simply dismissed, it is as clear as day on the surgeons discharge notice after major surgery in 2016 that the procedure will be done, but it was never addressed.
I just want answers and major discussion on my care or lack of it.

I dunno, it seems like its the DIY...NHS, well that is how it feels to me.

Several years ago, when I went to outpatients for a more minor problem, I filled out a form that resulted in me receiving a copy of the letter that was sent to my doctor. Don't know if this would apply now, or in your more serious condition, but might be worth your while enquiring next time you receive treatment. {flowers}

just a quick update.

I went to the gp's surgery today.

I will receive a telephone call from the GP, maybe tomorrow sometime.
at least I didn't have to battle for it as I was afraid I would have to.
hohum.

?

Best of luck

feel a little relieved today.
I had a call from the GP last night.
I explained my situation..

he said he is not satisfied with the information he received and is going to contact the hospital to clarify things.
I hope so.

Good news, sounds like things are progressing

here I go again.
cant believe the "copy of doctors letter" I received.
this is the GP who wasn't satisfied with the letter he received from the last procedure.

now I can see why, oh for gods sake, such incompetence with someone with cancer.

having endured 11 (not 10 as in the letter) cycles of chemotheraphy for bowel cancer, the latest letter informs my GP, a CT scan for my NECK will be arranged.

I already have a CT scan date for chest/abdomen/pelvis next Wednesday.

the letter continues to say, once I have received the date for my neck scan I must contact the colorectal specialist for an oncology appointment.....which I already have anyway for may 28th.

what the f..k is going on.

Please get in touch with PALS - you need someone inside the hospital on your side now. You could email them this weekend with a detailed description of what is happening. Better an email than a phone call. Im sure they will take your case up - make it clear what you want to happen. I’m truly shocked by what is happening to you

yearagain…..How very very upsetting all this is getting for you!

maryeliza is right, PALS could be the way forward. Do you have someone else who might be able to contact them for you if you don't want to?
If not please follow her advice and email them asking for their assistance. As she points out you need another set of ears in the hospital to be an advocate for you.

I'm aware that Wednesday 10th is your appointment and I hope you will come back and let us know how you're getting on.

good luck and best wishes.

thank you for your replies.
the ct scan is for today.

tomorrow I have a telephone call from the cancer co- ordinator line in the afternoon.
after that I will make my decision re my way forward.

I checked back through my paperwork, after surgery, and each procedure.

The main thing that is staring me in the face is that further procedures over the last 2 years were never addressed, despite asking oncology appointments when it would happen, referring them to the surgeons diagnosis.
which has led me to being in the position I am now in.
I just want answers.

so after tomorrow I will contact PALS if I am not satisfied with the answers tomorrow.
cancer is hard enough emotionally and physically let alone dealing with this.

after major surgery, the district nurse was to home visit to change the dressings, but no one arrived.
after two painful and stressful days I rang the hospital to ask when the nurse would come....to be told, oh dear, we forgot to book her!.....
communication, what a farce.

All the best yerragain

Was that the surgery in dec 2016 yearagain?
Look forward to your update!
??

yes, the surgery was in December 2016.

the surgeon not only wrote in the discharge letter after surgery,about the "suspicious lesion" which needed being attended to, but also at his follow up appointment in feb 2017.

I appreciate during chemotherapy until august 2017 it wasn't appropriate to do further procedures...but despite repeatedly asking the question at oncology appointments when would the procedure be done, my concerns were dismissed.

Right through 2017 and 2018 and it was only because I initiated the now 2 necessary and painful procedures in 20
19 that they were done.

and now it is "complex".

Yeragain...nice to hear from you and thanks for the update!
Is everyone connected with your care up to date and (in modern parlance) on the same page as you now?
Don’t answer if I’m asking too many questions!!
Nice to hear from you anyway??

sorry i don't undestand the questinon.

well, I will have to wait until the meeting on Thursday, to find out if anyone, everyone ,or no one is connected with anything!

surgeon, oncologist, endoscopist, or the cancer co-ordinator line who I spoke to at length explaining my serious concerns since 2016.

I don't feel too optimistic that I will have any conclusive answers to worrying questions, but will ...wait and see.
meanwhile, taking a day at a time.

oh my goodness, as if things couldn't become more stressful!

The "result" of the meeting Thursday,brought more anxiety after an hours conversation.
The oncologists appointment from the end of may, has "urgently" (hospitals words) been brought forward to this Tuesday.

worse still is the chemotherapy unit I attended during 2017, (which was brand new, I was one of the first patients, ) is closed!!!!!!!!!!!!

it was an hour or so trip, which after treatment was difficult enough to deal with , including the flushing of the PICC line weekly and other weekly tests.

God help me, now I have to travel a round trip of a couple of hours , plus parking is non existent, well its there, but finding a place is a game of roulette.

it will mean going to a park and ride for the city,, then getting a taxi to and from the hospital , back to the park and ride after appointments , then the trek home..
accompany this with feeling like total crap, what on earth is happening????

I am not a snowflake, pretty strong psychologically, ….am I making a mountain out of a molehill?????????????
I feel like stopping any further treatment and taking my chances.

Poor you. You are being so brave. Your experience is nothing short of appalling. I do hope on Tuesday you get some answers and some compassion from the people who are supposed to be supporting you in all this.

well, I am fighting fit (metaphorically).

the phone call I received after the meeting on the 18th explained that the decision was made to bring forward my previous oncology appt which was may 28th.

this was after a long discussion the previous week, how I had "slipped through the net" , which was agreed I had.

what I cant fathom is if the meeting was on the 18th, and the new appointment was given....how come I was given that appointment the previous day...before the meeting???

just dreading the trek to the hospital today.
it will mean car most of the way, then a bus to city centre, then another bus to the hospital.
not even worrying about how long the wait will be once there.

will make a list of questions that need answers...then make a decision....

oh my goodness!
left home at 1.30 yesterday to make sure I was there for the 3pm appointment.
arrived at 2.45.

sat outside the allocated oncology room, the previous patient eventually left.
ah, not too long a wait I thought.

the oncologist left the room, came back half an house later, called me in.
"how are you" he asked. not brilliant after the last 2 colonoscopies in feb and april I said.
he looked at me as though I was a crazy old lady.
"what are you talking about, why did you have 2 colonoscopies?
he had no idea the second polypectomy had cancer.
it should have been done in 2017 I told him, it might not have been cancerous then.

basically after a while he told me, "well this is 2019 now, I didn't see you in 2017, you need a pet scan, then possible surgery in London".

but he had been my go to oncologist over the last 6 months, didn't he read, or anybody for that matter that the surgeon in 2016/2017 had said I needed a colonoscopy as soon as possible as there were "suspicious lesions"

I told him how the cancer nurse co-ordinator line had told me she promised to contact me after the meeting on the 18th...which she did.
"there wasn't a meeting on the 18th he said, it was on the 11th!

just need truthful answers to all this, its hard enough having stage 4 cancer.

after my long detailed conversation with the cancer co-ordinator , a week earlier, why was my oncology appointment brought forward to yesterday from the end of may?
at the end of the appointment which left me feeling as though I was a hysterical nuisance, a stupid old woman, he said I had to have a blood test.

I replied I will go to my local hospital today , as I always have, as I was mentally exhausted, he said, no, I had to have it immediately there at the hospital.

why didn't he know I had a cancerous polyp removed (it was there in black and white since 2016)?

why didn't anyone know I had to have the procedure urgently done in 2017/2018/2019?

after major bowel surgery in 2016, who bothered with future cancer care?

If I hadn't initiated the first colonoscopy in march 2019, which needed a referral to a specialist for a second one which proved to be cancerous...….it still would be there, left to grow and provide me with a painful death....

or am I just making a "fuss" ,as he said this is 2019 now, the cancer has been removed, we just need to see if there is anymore!

it really helps me to write this down, the feelings I have of total confidence in any future treatment have just gone out of the window.

yeragain….Your not making a fuss, not at all!

Glad to hear from you. Hope you've rested a little since your appointment.

oh well, here I go again.
out of the blue I received an appointment for a mri scan for feb 2020.
I rang oncology, they had no idea what it was for, neither did I.

I had an oncology appointment 29th January 2020.
had picc line insertion ready for chemotherapy Tuesday 18th 2020.( this for lung nodules that have slightly grown)
but, here is the but....

despite informing the oncology team re the 3 procedures via the government bowel screening scheme during 2019,which showed malignant cancer, the oncologist had no idea.

even so, should have been addressed after major surgery in 2016 according to surgeons report..

1 showed the results of each, and they were hastily read, and replied to that it was benign1 I said read it again, ..yes it was malignant.
it appears the mri rectal scan is the follow up from the screening programme to see if there is any evidence of active cancer within the bowel.
both departments don't communicate, despite me repeatedly informing them through 2017/18/19 that they need to do as instructed by the surgeon in 2016/7.

but no one listened.
even now, I am told "sorry you are upset"

rang them again today for result of the mri scan, they haven't got it.

I am going round in circles.

all I want is for oncology to say, you know what, we should have addressed the "suspicious lesions in surgeons referral, in 2017, its fortunate that you took it in your own hands and hopefully it hasn't invaded the rest of your bowel"
or is that asking too much?

Hello Yeragain, I am so sorry to read about your circumstances.

We can safely agree you are not a ‘snowflake’, you articulate your story clearly and ably. It’s dreadful that you are not being heard. I can’t imagine how frustrated you must be.

I don’t have any practical advice to offer, only my best wishes - ?