just need to rant...

We have recently concluded that we are going to have to take more responsibility for our own health which is fine as long as we are able to and we may have to fund some treatment ourselves. DH has recently been seeing a physiotherapist for arm pain and a podiatrist for painful ingrowing toenails both of which he has funded himself. The GP felt the arm pain was arthritis and couldn’t offer any more than a painkiller prescription so we decided to consult a physio as our son knows of a good one. Apparently he has a frozen shoulder and we paid for three appointments for advice, exercises etc. At the final appointment she said she was going to send a letter to the GP requesting a cortisone injection to help with the pain. He has been waiting four weeks now and no appointment has come through yet, apparently it can take up to a yea4 as there is a long waiting list. He is a Type 2 diabetic so has to look after his feet and the Surgery have said this isn’t covered by the NHS and although they can check his feet they can’t do any treatment so he has found a good podiatrist. After three visits the podiatrist has recommended he has minor surgery to remove the sides of the nails. So all of this has cost £180 for physio and podiatry appointments so far and will cost £330 for the toenail surgery, add to this the £750 he had to spend on dentures from a private dentist because he was unable to wear the dentures the NHS had provided after three attempts to get them right. It is very worrying that people who aren’t able to pay for such treatments will suffer.

Yeragain65 I realise our problems are minor compared to what you have experienced and I wish you all the best for your upcoming treatment.

I am so sorry Yeragain you have had a horrible experience, and the worry is dreadful. Thinking of you as you go forward with your treatment

Yeragain how dreadful! Luckily your latest scans are fine but what a performance from beginning to end! We should be able to trust our doctors and hospitals 100% but sadly this is not always the case.

well, thank you for your interest and replies.

eventually after repeated calls to the cancer designated care line over the last two weeks, only to be told each time "the result isn't ready yet"...it simply wasn't TRUE AT ALL.
even contacting toe oncologists secretary to be told the same.
the stress has been awful.
finally Monday this week I got a call from the cancer care line to say that in fact the report had been discussed in the last mdt meeting and it is clear thank god.

so I began my 12th cycle of chemotherapy Tuesday in the knowledge that it isn't for an additional cancer site.

BUT,....I still have the question that leaves me wide awake at night.
If I hadnt arrange for the procedures to be done which happened 3 times in 2019, which proved malignant, they would still be GROWING inside me,as no one followed up on surgeons 2016 instruction despite me telling them all over 22017/8/9 it was imperative to do it.

no one listens.

I'd had an X-ray then the phone call to see the doctor. I was going on holiday before the next available appointment and needed to know if there was anything relevant to tell my travel insurance company so the receptionist read the result over the phone to me, very obliging. (X-ray was clear but further investigation ie ultrasound needed).
Can't fault my GP practice.

Jane I had a letter within a week of having a MRI (after they had said 2 weeks ) to make an appointment with GP. Obviously I expected bad news but no it wasn't. Only I couldn't be told anything till I saw the doctor!

Why don’t hospitals and GP staff appreciate how stressful it is to wait for the results of tests etc? It is very stressful and stress is bad for our health. A friend of mine has numerous health issues, was having difficulty walking and after pestering her GP for help had an MRI scan a few weeks ago. The GP surgery phoned her and told her to make an appointment with the GP as the result was abnormal and she had to wait two weeks for an appointment
. Since she had breast cancer two years ago and there were cancer cells in the lymph nodes which were removed her imagination went into overdrive and I was worried for her too. When she went to the appointment she was told she had a crushed vertebra, osteoporosis and was prescribed medication. Why couldn’t this have been done over the telephone to ease her concerns? Our GP sets aside an evening each week for telephoning priority patients and soon after I had a lumpectomy she telephoned me to see how I was; it was unexpected and appreciated.

I think they don't acknowledge any failings on their part in case of repercussions. It's up to you to prove it, and that only adds to an already stressful situation for you.
Best wishes for tomorrow xx

yes, the thought that if I hadn't taken steps in 2019 to have the procedures that proved to be malignant operated on, the cancer would still be growing unchecked.

now spending stressful days and nights now knowing if all of the cancer had been taken, just adds to an already stressful time.
having repeatedly called the cancer line for the mri result ,to be told haha, the computer says no, except its not funny.

waiting for reply from the cancer line now, hopefully the scan will be clear and not invaded the bowel, just the known cancer in the lungs for treatment tomorrow.

I had a long discussion with the oncologist last month , asking why the treatment from 2016/7 hadnt been carried out ,but it was simply denial that it didn't need to be done.
I have the hard copy from the surgeon that it needed to be, so just knocking my head against a brick wall.

wont someone just say, yes we should have done it in 2017 but...well you just slipped through the net....

but no, why should they bother, I am just a name or number to them.
its not a ingrowing toenail, its stage 4 cancer.
.

How frustrating for you. Actually, beyond frustrating. Is there anyone you can talk to at a higher level? Could you ask for an appointment with the Consultant in the field? Sounds like lack of joined up awareness. Good luck. You poor thing. This is a rotten situation.

can you believe it.
tomorrow I begin some more chemotherapy for lung mets..

guess what....I still haven't been given/assured that the cancer hasn't invaded the bowel , the reason I had the mri scan..

I rang the cancer care line last week..."we haven't had the report yet....basically couldn't care less.

the mri report was meant to have been discussed at the mdt meeting, not a word, despite me ringing the cancer line.
I rang them again today, still waiting for a reply.

if I was an important celebrity, I am sure this would be handled quite differently, instead of being an insignificant pensioner.

so basically, investigations after major surgery in 2016, weren't addressed despite me telling oncology numerous times that the surgeon identified the possible bowel cancer, now I am in a high state of anxiety not knowing what will happen next.
what a shambles.

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 - ?

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?

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

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

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.

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....

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.

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.

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.

sorry i don't undestand the questinon.

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??

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".

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

All the best yerragain

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.