No news then a gobbleydegook letter
I arrived back home after my InterRail trip to Scandinavia on Saturday, 27 May, half expecting a letter or message confirming a second scan appointment to check whether any sign of cancer spreading to upper body, as indicated by both the doctor who gave me the bad news and the specialist cancer nurse who contacted me afterwards. Nothing.
I waited until after the Bank Holiday on the following Monday, thinking there might be something in the post the next day. There was, but it wasn’t very helpful or user friendly:
What do you make of that? Apart from being gobbledegook, the bit that really worried me was the request not to do anything until 14 July if I hadn’t heard from them. Do they really expect people with a cancer diagnosis to wait 8 weeks before following up an appointment?
Talking sense with the GP
At that point (and remembering the nonsensical phone call I had in Oslo about where I wanted to be treated) I decided to contact my GP. We talked things through on the phone the next day, 31 May. She hadn’t seen the CT scan report (just had a message from InHealth to say the scan had shown a “mass”) so she was none the wiser than me about its size, location etc.
She thought that the two colonoscopy referrals (one standard, then a fast track one) had confused the system. The original one had not caught up with the subsequent fast track referral. The letter above was wrong regarding waiting time to follow up; ignore it. She would follow up with the hospital to check that all the referrals are in the right place. Although the cancer specialist nurses were best placed to advise if I needed more information, but she’d be happy to talk things through. We arranged an appointment in the surgery for a couple of weeks time.
Cancer care nurse call back - more information
Later that day, there was a call back from the cancer specialist nurses. My case was due to be considered by the Multi Disciplinary Team (MDT) on Monday 5 June. According to the scan report, I have a 3cm mass in the left descending colon which looks like cancer, but there’s no biopsy to confirm. The MDT may want another colonoscopy to try again to get biopsy (the first colonoscopy camera couldn’t get beyond a benign stricture - narrowing of the colon - to see or take samples of the mass). No sign on the scan that it’s spread to lymph nodes or other organs. No need for another scan - the ones I had before show the upper body as well as the abdomen. All good on that front.
In technical terms, the mass is T (tumour) 3 - out of a possible score of 4 so quite large - M (metastasis) 0 and N (lymph nodes) 0. In old money, stage 2 i.e. growing but not yet spread.
The MDT will decide if it’s suitable for surgery; they may go straight to surgery or it may take longer if chemo thought necessary (unlikely). She will get back to me with news next week.
The MDT meeting 5 May
I was hoping to hear from the MDT meeting on 5 May that I’d go straight to surgery. The sooner this tumour is removed the better, as far as I’m concerned. The longer it’s in there, the larger it gets and the greater the risk that it will grow through the bowel wall and start spreading. That would NOT be good for the NHS or for me.
My hopes were dashed when the nurse called back. The MDT has decided that a proper biopsy is needed, and that it’s worth trying again, even though last time the camera and biopsy instrument couldn’t get beyond a benign stricture to reach the mass. My heart sank…at the thought of another colonoscopy and all that entails (low residue diet, bowel prep, purging and fasting, and the inevitable sore bottom); with fear that trying to push a camera through a space too tight to get though first time round would be painful and risk perforating the bowel, and last but not least, at the additional time this would add to the delays I’d already experienced with diagnosis and treatment since the 14 day fast track referral back on 30 March. Still no end in sight…
I was told that Endoscopy would call to arrange an appointment, and that I was still on track on the fast track referral pathway.
Trying to get things back on track
Having taken time to digest all this, it seemed to me that the hospital was not aware that my GP had put me on the fast track 14 day referral back on 30 March, and I was already way off the cancer care pathway timescales for diagnosis and treatment. This delay would only make matters worse, and with it the increased risk of the cancer growing and spreading. I emailed the specialist cancer nurses on 6 June to express my concerns and anxiety.
Appointments for colonoscopy and to see a consultant
Later that same day, radiology called to fix the next colonoscopy appointment. It will take place on 15 June at a hospital in Banbury rather than my own city of Oxford (where waiting times are longer).
My cancer nurse called back too, to let me know that she’d passed on the information in my email to the MDT and now that the colonoscopy appointment is fixed, she will book me into a clinic to see a consultant on 22 June. At long last, things seem to be moving in the right direction!
Actually, I’m not sure what will happen at the meeting with the consultant on 22 June. I hope by then that results of any biopsies taken at the forthcoming colonoscopy will be available and that my case will have gone through the MDT at the preceding Monday meeting on 19 June (or the overflow meeting they sometimes have on Wednesdays). We shall see…
Colonoscopy call back
7 June and a call back from the colonoscopy nurse to let me know that the bowel prep had been posted and to talk me through how to take it. I discussed my fear of pain and how sedation last time round had not made me feel any different. She checked my notes and found I’d only be given a low dose sedation last time (no wonder the experience was on the painful side of uncomfortable). She promised to document the sedation issue on my notes but advised me to flag it up again on then day. You bet I will!
The consultant appointment letter
I’ve since received a letter dated 7 June confirming the appointment with a consultant on 22 June. It says “should your surgeon decide you need an operation, you may be offered a pre-operative assessment on the same day -please allow extra time for this” Yes please, I do hope so…Bring it on!!
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