Mike's Treatment Diary

17th June 2024 Back at UCLH three months after the last scan. Nothing major to report, still get tired more than usual, dry mouth overnight and still not 100% on the taste of Cadburys Fruit and Nut.  My lymph node has been steadily shrinking over the course of the last three scans and nothing i have felt has made me believe that's not still ongoing. We'll find out later this week. Fingers crossed everything will run to time, I got bumped from Friday last week as one of the machines was down. It is busier in Nuclear Medicine reception than it has been before.

Friday 15th March 2024 Into the city again to UCLH for my 3rd post treatment PET scan.  Same as before, injected with the radioactive trace, an hour of rest whilst it circulates then a full body plus a specific head and neck scan.  Takes about an hour and a half from start to finish. As I'm now back at work 5 days a week I went over to Aldgae and spent the rest of the day on the office. Now sat on a train at Liverpool St commuting home, like the old times..... I have a telephone appointment next Thursday so should get the result then.

Thursday 28th December The Oncologist has the PET scan results and they show that all is still well. The lymph node is still shrinking, by about 30% since the last scan. So in all a much happier Christmas than last year and a check up in three months time.  Onwards and upwards

15th December 2023 09:40 Back at University Collage Hospital for a PET scan Canular inserted to allow them to fill me with a radioactive trace. All done by 11:30, off for a well earned Christmas curry :-)

Following on from the biopsy and MRI from a month ago we have confirmation that the primary cancer site is clear and that the secondary site in the lymph node contains only non-active remnants of the cancer there. Effectively it's gone. The last couple of weeks and a visit to the surgeon today have been deciding the best path forward regarding the lymph node. The upshot is that it will remain in place as its no longer any threat and I'll be scanned and monitored. Next scan around the end of the year. The possible collateral damage to muscle and/or nerves in the neck as a result of surgery are figured to be avoidable as the node is benign now. If things change surgery can be revisited. So, onwards and upwards. Thanks for following my diary and for your positive comments and thoughts.

Friday 8th September  10:30 Train from Stortford at 07:15, tube from Tottenham Hale to Warren Street. 08:30 Blood test at the McMillan Cancer Hospital 09:30 Ultrasound scan at the ENT Hospital next door 10:45 Canular inserted for and MRI at 11ish, then back to ultrasound for a biopsy.

Tuesday 5th September  19:10 Since the mixed news of the last entry it's been a waiting game, this Friday I haven ultrasound guided biopsy on the lymph node on the right hand side of my neck. It's been a frustrating wait. I still don't know if I'm getting an MRI on the same day. This would be ideal so I don't end up having to go into UCLH twice. Also the sooner the better. If I need it operated on I'd rather know and get it out of the way. 

Thursday 17th August Just had a call from the UCLH oncologist. PET scan all clear - tongue/primary site no cancer MRI scan - right hand side lymph node secondary  site shrunk a lot but not entirely gone. Oncologist not 100% happy so I'm going for another MRI and an Ultrasound at UCLH to confirm, this mat possibly result in an operation to remove the remaining cells. Good news, not out of the woods yet though.....

11:00 Thursday 10th August I'm in UCLH Nuclear Medicine being prepped for my PET scan. Cross everything for a positive outcome... 

Sunday 6th August 20:30 It's been almost a month since my last diary entry. I've been pretty much stable for the last few weeks, dry throat so drinking fluids regularly during the day and waking up every 1.5 hours overnight.  We've been to Wales for the last week or so, sea air, change of scenery and meeting aunts, cousins and old friends. I had an MRI scan a couple of weeks ago and this thursday is the long awaited PET scan at UCLH, the results of which will hopefully confirm the cancer is gone and I can start to plan return to work.

July 8th Over the last three weeks I appear to have levelled off in recovery. I don't have any pain, I'm chewing and eating OK and my taste is mostly back ( not for Cadburys Dairy Milk though, sadly). I do though have a very dry throat and some associated odd tasting saliva. During the day this is manageable with plenty of fluids but o ernight my mouth dries out and I'm awake three or four times drinking water, which has the knock on effect of a full bladder and visiting the loo each time.  I'm still feeling tired most afternoons, not helped by the rubbish sleep I suppose. I'm starting to fixate on 10th August which is my scan date, I just need to know if its gone or not. 

June 17th  13:30 Not much to report, for the last few weeks I've been steadily improving. My taste has pretty much returned for normal food, milk chocolate unfortunately still doesn't taste quite right. I've seen the Oncologist at the Princess Alexandra in Harlow and am dur to meet again mid-July then have scans early August. I still have a sore under my tongue which produces unpleasant tasting saliva although this is not overpowering the taste of food as it did during radiotherapy. I'm also not tiring as easily, which is nice. Looking forward to working on cars again. The X1/9 is pretty much OK now, the Seicento starts on the button and I need to get Luke to wake up a bit earlier so we can continue driving lessons. The Abarth has a scraping noise from the OSF wheel and the brake discs have a bit of a lip so I've bought new Brembo discs and pads to swap out. At the same time I'll renew the front top shock absorber bushes.

Saturday 2nd June 20:00 Progress continues, my taste has almost returned in full. I still have issues with the taste of Dairy Milk chocolate but otherwise I'm eating the same meals as Julie and Emily (and Luke when he's back from Uni). Today we went out for the morning to a local village scarecrow trail, with a stop for a pub lunch on the way back.  It was great being out in the sunshine but now I'm knackered, which is a pattern most days. Do stuff in the morning, doze on the sofa in the afternoon. I also have more discomfort in my throat in the evenings which on the whole isn't going away. I needed to use antacid tablets for the last few days too as I was getting a bit of reflux. On Tuesday next week I'm off to the local NHS Trust ENT department as I've been discharged from the UCLH/North Middlesex for now. My next PET scan is 10th August when hopefully they'll know if I'm clear.

Tuesday 23rd May 14:15 All being well this should be my last visit to the North Middlesex for a while. I've got a review with my oncologist which should result in me being discharged back to my local trust. Stuff is actually beginning to taste as it should, I'm still struggling with chocolate - that seems to taste like a spoonful of cocoa powder. I had a couple of boiled eggs at dinner time which were exactly like boiled eggs. Swallowing is now pretty painless, the only part of my mouth that is still sore is the underneath of my tongue on the right hand side near the back. This is on the side that the lesion was on so I'm assuming got the most concentrated x-rays during radiotherapy.

Friday 23rd May 09:00   Finally, a cup of tea that tastes like tea, unlike the cup that Arthur Dent had made for him by the Nutrimatics Drinks Dispenser of the Sirius Cybernetics Corporation* aboard the Heart of Gold which produced a liquid "almost, but not quite, entirely unlike tea". (RIP Douglas Adams, taken on 11th May 2001 far too soon). My taste appears to be slowly returning, I woke up this morning with much less pain so the incremental improvements continue.  Still worn out by early afternoon, but as I continue to eat more normally I should get over that. * The Sirius Cybernetics Corporation company motto is " Share and Enjoy ." This is widely adaptable, from synthesised drinks to the company of a robot, or "Your plastic pal who's fun to be with", as their robots are described as by the aforementioned Marketing Department. The Hitchhiker's Guide to the Galaxy  describes the Marketing Department of the Sirius Cybernetics Corporat...

16th May 22:00 Had a phone appointment today with my oncologist, speech therapist and dietician. I've stabilised my weight although overall I've lost about 2 stone. I'm doing as they expect, I still have taste issues but day by day I'm seeing incremental improvements in the pain I'm getting. I've noticed that in the mornings I'm able to swallow without much pain at all, this deteriorates during the day as I get tired but I'm also supposed to be removing the morphine from my pain management regime.

Wednesday 10th May 08:00 I went back to the North Mid yesterday to see the oncologist, the speech therapist and the dietician. I'm doing OK, I still need to eat more. I won't get another PET scan until three months after treatment and I'm not to expect a full recovery at least six months in, may take a year depending on the individual.  I am back to eating what I was in about week 4 of treatment, I do still need to use the supplementary shakes until I can properly chew and eat normally though.

Sunday 7th May 09:40 The last 24 hours seem to have been an ongoing improvement. The pain is still very much there but I am able to reduce it to be able to eat a bit more. I've had a bowl of porridge this morning, and should be able to tuck into some trifle Julie made for me later.  I had a tin of scotch broth yesterday too, so now I need to try a few things for taste to see what I could have a go at.

Star Wars Day 19:30 After a couple of days feeling really sorry for myself, I've got a higher grade morphine patch and the nod to go up to 7.5mg on the oral morphine (alongside the 4 cocodamols a day).  Today this meant I was able to get 4 of the nutrition shakes in me, which is better than previous. I'd hesitate to say this is a corner turned but if the same happens tomorrow I shall be very happy.

Tuesday 2nd May 14:00 Back in the North Middlesex for the first post-treatment assessments.  The weekend wasn't great, as expected, and this week is destined to also be rubbish according to the four specialists I've seen this afternoon. Pain management is the key to me being able to ingest enough nutrients to optimise my healing but currently every swallowing action is excruciating. I'm waiting for the pharmacy to process my latest controlled drugs prescription, more morphine, so I can increase each individual dose.