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Appointment with colorectal consultant - scared

6 replies

parttimecarriemathison · 07/04/2022 21:53

Really worried after a long awaited appointment to see consultant today after experiencing symptoms for a while. Got referred a month ago. Been feeling okay and typically symptoms has subsided between referral and now.

There is some history of bowel cancer in the family but I naively thought he’d check and say piles or something but had an examination with camera and felt my abdomen. Could feel tenderness and a mass.

Is booking urgent CT and colonoscopy and got me to stay and have various bloods taken.

I was too confronted to ask much. He asked if I had any Qs and I said no.

Got into car after it - felt strange as hadn’t been expecting the camera and examination. Not sure what I was expecting really. Now feeling real dread about what happens next. He goes on holiday and can’t do colonoscopy until early May. I think the CT can be before but I don’t really know.

Do you think I can call his secretary/assistant and ask some questions tomorrow? Not sure what the done thing is. Do I just wait for a letter ?

I don’t know what to say to my husband so haven’t said anything. I drove an hour and went back to work but feeling worried. And don’t know if I need to be or whether this is routine to rule anything sinister out.

OP posts:
Ilovehatecleaning · 07/04/2022 22:34

I'm sending a hug.
I can understand why at the time you didn't ask. You were stunned. I don't think it can hurt to call his secretary.

MissSmiley · 07/04/2022 23:22

@parttimecarriemathison
What symptoms were you having before you appointment?
Where was the mass the consultant felt?

parttimecarriemathison · 08/04/2022 16:09

Thanks for the replies.

I called the secretary and left a message. Separately the hospital called and booked a CT scan for Monday morning but the person booking had literally no notes or details of anything and couldn’t give me any information except where to turn up and what to do because the letter wouldn’t get to me before the appointment.

In a bit of a daze to be honest.

It was right side of my abdomen.

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Catmummyof2 · 08/04/2022 16:17

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

parttimecarriemathison · 08/04/2022 16:21

@Catmummyof2 that’s super helpful to know. Thanks

OP posts:
emelk · 13/02/2025 19:22

I know this is an old thread. But reading about colorectal cancer brings back memories for me. Bad and good. Might be of interest to someone reading. I don't feel like starting a new thread. I do not want to alarm anyone reading, but I had a poor experience as an NHS patient at St Thomas' in 2023 where I had surgery for an early stage colorectal cancer. I am now NED, thank goodness, but feel no gratitude whatsoever towards either of my surgeons or some of the nurses and HCAs who I encountered there. I don't consider myself ungrateful and now know I had a lucky escape from there. I do feel lucky and hugely grateful to the wonderful team at the second NHS hospital who took me in via their A&E when I had become very unwell after nigh on four weeks on the same ward at St Thomas'. The people at the second hospital were angels and put me on track to recovery and I will never be able to thank them enough. At St Thomas' my cancer was over-staged, over-treated, and I was not informed of the highly-likely-to-be-all-needed simple, tissue-sparing, first line, minimally-invasive surgical option nor of the high complication risk of the operation I had. I stayed throughout on a general GI surgery ward with very inadequate relief for my pain or effective treatment of my ever-worsening condition. I was getting weaker and weaker over that period as a leak from the surgery site allowing waste to drain from bowel into peritoneal cavity went, first, undetected for weeks, then was inadequately managed leading, finally, to what seemed like flurry of panicked activity and the bombshell announcement from the lead surgeon at his ward round that the only solution now, alas, because I had developed this well-documented, common, complication which had not healed on its own, was to remove my anal sphincter and do a permanent ileostomy. A Barbie Butt. Happily, that didn't happen, but only because I self-discharged against medical advice at that point and somehow hauled myself to the second hospital where light-touch, expert, care turned things around for me pretty quickly. They had the skill and confidence there to second-guess the first surgeon's awful announcement and saw that my leak only required effective draining to be able to heal, along with giving me just a temporary stoma. Given a little time for the leak to heal and having had another operation to reverse the stoma, I no longer have to live with a bag, albeit that I am, obviously, affected by having had my rectum removed. Now that I can look back on that whole episode in its entirety, I realise there were alarm bells ringing way before I went under the knife. Alas, I ignored them all. My only excuse for being so stupid is that I was so shocked and scared when told that I had cancer - I could only see those rogue, immune-system-fooling, cells in my body steadily growing and sucking energy from the surrounding good ones - that I thought that any delay if I sought a second opinion would automatically mean that my cancer would have time to spread and became terminal. Here are examples of the red flags. Even before diagnosis, while going in for scopes and scans and then waiting to hear back about my treatment plan, I found it impossible to get through to anyone via the departmental switchboard. My sole pre-surgery meeting with the lead surgeon was alarmingly brief, especially considering it was for a four-hour long surgery using cutting-edge technology and which would have an irreversible quality of life impact. The meeting consisted mainly of an unwarned-of and very quick rectal exam, with the surgeon telling the chaperone nurse and me afterwards that he could feel my tumour. In fact it was just a large, cancerous, polyp sitting about 10cm inside me. I doubted at the time that his fingers could be long enough to have been able to feel it and kick myself for not piping up at the time. No diagram drawn, no showing me any of the scans which had been taken, which I had been expecting. Surgeon went on to tell me that he wouldn't actually be doing my surgery: it was going to be done by a colleague he worked with who was not in that day. Why hadn't I been told this and offered the option of an appointment on a day when this surgeon could see me? I felt like I was making a fuss, but I did insist on meeting the surgeon who would be doing my operation ahead of it happening. I was given a named nurse - who had been the chaperone at the examination - as my liaison with a DDI and email address. She made no effort to keep in touch, although she was perfectly pleasant when I met her. Preparation in the following two weeks leading up to surgery was patchy. For example, I was summoned at very short notice for several hours for a pre-op briefing about exercise and diet with a stoma which were very basic, repetitive and pretty irrelevant as much of it was prepping me for having a temporary de-functioning, stoma which, I now know, my surgeon never had any intention of giving me. Being given only a two week run up from diagnosis to my surgery date made me think, incorrectly, that I had a highly-aggressive cancer, and was stressed and begrudged the time this all took when I was busy trying to make all kinds of domestic arrangements for after surgery. Going back to the period between my GP's referral to the pre-diagnosis, testing, period, I remember receiving two letters in the post, maybe a day apart, for the same appointment. The first letter was just full of typo-ful and conflicting details of where I had to report to for a scan or some other test. I guess the second letter was sent by way of correction. I remember pre-colonoscopy, take-at-home, bowel prep drugs arrived at the eleventh hour with me being warned I might need to collect them from the hospital's on-site pharmacy if they didn't arrive on time. I had known I would need them for several days before finally receiving them and could not understand the delay in sending them out to me. I never received a letter, text, phone call or email telling me where to report the day before my scheduled surgery. But I had been told at a pre-surgery consultation to go to the hospital the day before as my surgery was scheduled for the following morning. Upon arrival at the hospital in the afternoon the day before surgery, the GI Dept receptionist I approached said there was no record of me being expected that day. Eventually - over an hour later - they said "your operation is TOMORROW" (as in "you need to check what day it is, dear") followed by "so go home and come back tomorrow at 7am". I had naively been expecting a reassuring, late afternoon, pre-surgery meeting with the anaesthetist and maybe also the surgeon who would be operating, to be marked up for a stoma, be given the consent form etc. I was finally given a bed for the night just as I was getting up to leave. No visit from any medic or stoma site mark up that night. I should have said at that point "this is not inspiring confidence: I am having a life-changing amputation tomorrow and you are treating it all too casually. I'm going elsewhere". But the hospital's illustrious history, it's wonderful location, the reassuring website entry telling me that my surgeon had been there for many years, all convinced me things would be OK. And my fear didn't help. I also had the worry that I would be billed for wasting hospital resources if I pulled out at this late stage with the surgeon, the theatre team and the robot standing idle for a morning because of me. I won't mention any of the various other neglectful, incompetent, frankly shocking things that happened to me during my time there. By contrast, all the appointment-making and other communications with admin staff at the second hospital were accurate and easily accessible. All the explanations and briefings were concise and to the point. It makes me realise that when you are dealing with a big organisation like a hospital, the "soft" signals in things like appointment letters are often really important clues to what the "important stuff" - like the quality of treatment - will be like. Please don't let my account of my experience put you off getting yourself checked out for any cancer, nor should it put you off the NHS. I don't want that. In the end I got excellent NHS care. But I think it's good to be as informed as possible, which is what this post aims to encourage. I think if my first surgeon had had it in writing from me that I wanted to explore a minimally-invasive option first, he would have been less likely to rush me into the most radical surgical option which was what he wanted to do but was not best for me.

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