Most of the personal stories we share are from throat cancer patients. We hear one of the most moving stories from a carer. Julie Harmon’s husband Phil was diagnosed with Tonsillar Cancer in 2014 and she kept a diary full of brutal honesty about her experience of dealing with and coping with it all.
A wonderful account that will make you laugh and cry in equal measure and for which many carers will understand.
It is why we must recognise the importance of carers in dealing with throat cancers.
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Phil’s notes
04/12/12 – First visit to my GP, Dr Paul at Twyford
17/12/12 – First meeting with my surgeon, Mr Patel at Winchester
23/12/13 – Pathology blood tests at Winchester
27/12/13 – Had MRI and 2 CAT scans at Winchester
03/01/14 – Pre-assessment clinic at Southampton General Hospital
09/01/14 – Pan endoscopy and biopsy on left tonsil
14/01/14 – Histology review with Mr Patel at RSH and the Southampton General Hospital
14/01/14 – Officially diagnosed with Tonsillar Cancer
Julie’s diary notes
31 March – 10 May 2014
Week 1 of 6
Day 1 – All OK
Day 2 – Met Dr Ram and Lauren. Asked about prognosis etc. All good. Weight 98kgs
Day 3 – Phil went on his own, met the Nutritionist today, told to eat a lot more. Booking in for Nasal feeding tube in 2 weeks time.
Day 4 – Chemo and Radiotherapy day. Dropped Phil off for 11am and picked him up at 4.30. He was given anti-sickness tablets (Dexamethasone) to take twice a day for 3 days. If after 3 days he still feels sick, then he has to take 1 Metoclopramide Up to 3 times a day.
Day 5 – Phil drove himself
A good week. Nev stayed Saturday and Sunday. Peppe and Rossana came for dinner Saturday. Phil had no sickness.
Week 2 of 6
Day 6 – All okay. Phil drove himself to the hospital. He still has a good appetite.
Day 7 – I go with Phil on Tuesdays as its review day. He is beginning to lose some taste buds. Review was with Lauren only. She was very pleased with Phil so far. Prescribed a soluble aspirin mouthwash to gargle with when needed and build up drinks. Weight 97kgs – 1kg down.
Day 8 – Nutritionist gave Phil 21 Fortisip drinks. We went for a Chinese meal at The Water Margin saw Paul and Piña.
Day 9 – Chemo 2, Phil drove himself. Said cereal tastes like cardboard. No sickness. Debby 50th birthday today.
Day 10 – Radiotherapy only. Most savoury food now tastes bland. Chocolate and puddings are okay. Charlie’s 6th birthday
Another good week. Sue and Tommy down for Debby’s party.
Week 3 of 6
Day 11 – Phil had a pain in the chest this morning, but probably because he was helping Mike dig in trees!!! I drove with him to radiotherapy. He has one abscess on left side of tongue.
Day 12 – Phil is feeling down, should be staying overnight for feed tube, however there is no bed so having it put in tomorrow overnight instead. Saw Lauren, weight is good, put on a little, 97.4 kgs. Prescribed more painkillers and a lot more food supplements. They’ve taken over a cupboard! Went for lunch at La Margherita’s while we waited for the prescription to be ready. Started taking paracetamol and aspirin gargle 4 times a day.
Day 13 – Staying overnight for nasal feed tube. NO BED!
Day 14 – Chemo and radiotherapy day. Finally, a bed is available! A bit of a nightmare though. The nurse put the tube up and in at about 7.15pm. I left an hour later, Phil had still not been seen by the doctor or had the feed put through. I left at 8.15, Phil texted me at about 10.30 and they were about to start. Had the first feed which was fine then half way through the second Phil pulled out the tube. This is the text message he sent me…
“…I have always said “watch out for the nutter cos there is always one”. Well today the nutter was me. Whilst fast asleep and dreaming of being on holiday somewhere, I decided to remove my feeding tube. Completely! I was 8 hours through a 12 hour feed and I simply took it out while still asleep. Food everywhere. Nurses were great. New tube will be fitted today…”
Day 15 – Good Friday. Obviously not the best start! Phil very tired tonight. Didn’t use the feed tube at home. Has eaten enough calories and had a feed last night. Concerned that he will try to pull the tube again. Charlie staying overnight so I’m in Sarah’s room.
HALF WAY!!!!!!!!!!!!!!
Weekend not so good. The milkshakes I make are starting to burn Phil’s tongue but he’s using the Oxetacaine to help numb the mouth. He ate a very small roast dinner and leek and potato soup. Tried chocolate but no taste.
Week 4 of 6
Day 16 – Starts Tuesday, no radiotherapy, Easter Monday. Review day and blood test day. Saw Dr Ram today he said Phil isn’t doing just good he’s doing very well and if he had a star he would give him one! Lost 1 kg so need to up the calories this week, 96.3kgs. Dr Ram prescribed liquid morphine for when it’s needed. He may feel queasy the first couple of times so to take at night to begin with. He’s still okay to drive when it’s taken during the day once the body has gotten used to it.
Day 17 – Radiotherapy only today, picked up a lot of prescription foods and medications. Had a small portion of fish, mashed potatoes, vegetables and parsley sauce. Getting hard to swallow.
Day 18 – Chemo and radiotherapy. All okay. Had a small cottage pie and vegetables cooked in lots of butter followed by rice pudding. No more yogurt or fruit, too acidic.
Day 19 – Radiotherapy
Day 20 – Radiotherapy on Saturday!
Booked a 2 day cruise on Oceana for June 21, a good target.
Week 4 done! Phil packed all the feeding tube foods away upstairs. He hated seeing it hanging around and thought it too negative. A few more mouth ulcers this week but still managing to eat little bits.
Week 5 of 6
Day 21 – Radiotherapy and the last Monday one because next week is a bank holiday. Today Phil ate golden nuggets for breakfast, salmon and cucumber sandwich, kids portion chicken pie, mash, peas, cauliflower, loads of gravy and a few chips. He tasted it all but later he had syrup steam pudding and custard and couldn’t taste it. Had lots of fortisip drinks and I made a protein shake. He’s tired this evening looks a little weary. Says he has tinnitus. Need to be careful of ear problems.
Day 22 – Review day, blood tests and radiotherapy. Weight 95.5kgs. Dr Ram told Phil to use the feeding tube as he’s lost another kilo. Said his throat is very sore looking, (no shit Sherlock!) drop the movocol to one a day if needed! Use 2 if and when he starts morphine.
Day 23 – Radiotherapy and nutritionist. No more cold prawns because it could cause sickness. Today Phil had quite a bit to eat, cottage pie and veg, lots of fortisips and home-made milkshakes, so no tube required. He says his throat isn’t too bad, but the tongue is very sore. The mucky mucous is here!! He had a bad night although he only remembers waking twice. I’ll rephrase, I had a bad night, Phil slept through the noise he was making.
Day 24 – Penultimate chemo!!! Put on a little weight which is good. Fishcakes, mash and peas for dinner, jelly and an ice cream milk shake. A bit of chemo brain I think today. First, he left his mini iPad at the pharmacy then threw the house keys in the dustbin!!
Day 25 – Just radiotherapy. Mucous and coughing/choking is getting quite bad now.
Week 5 over! The worse week so far. It’s really beginning to take its toll now, I feel so helpless when he’s choking. Using the tube feed more now because his throat and tongue are hurting a lot more when he eats. Lots of ulcers suddenly appear from nowhere. Generally, not a good weekend for Phil. I feel very sad for him. So sad!
Week 6 of 6
Bank holiday Monday. No treatment today. Phil started Morphine tonight 10ml
Day 26 – Tuesday. Review and radiotherapy. 94kg. So, he got a telling off. Must not lose anymore, possibly won’t have last chemo if he does. To be weighed everyday now. Take morphine 5ml 2 hourly, but can take 10ml at night. Co-codamol has also now been prescribed for pain medication.
Day 27 – Not a good day but his weight has gone up to 94.8. Phil is very listless and really struggling with mucous.
Day 28 – Chemo has been cancelled. A phone call would have been a good idea! Such an effort to get out of the house. Phil can’t swallow anything now. Weight up again though, 95.3kgs. He’s to drop the paracetamol and take co-codeine every 4 hours. He’s a little better than yesterday.
Day 29 – Penultimate radiotherapy!! 95kgs so down slightly. I was allowed in to watch Phil being strapped down and took a couple of pics. Gave the radiotherapy teams chocolates and a card.
Sarah home for a week.
LAST DAY – 9am appointment on a Saturday! The good news was that the car park was empty. Weight 94.6 so down a bit. Going to keep an eye on that over the next 2 weeks. We were given the mask and the radiologists gave Phil the CD they used to play for him. Quite an emotional day.
LET THE HEALING BEGIN.
Recovery started May 11
Day 1 – Phil stayed in bed. Only had 3 fortisips with some soya milk added, about 1000 calories, over 2 litres of water and all the medications he could possibly take, but in pain with a burning tongue and thick saliva.
Day 2 – Phil stayed in bed. I phoned oncology, they said to increase liquid morphine to 7.5ml every 2 hours with 2 soluble co-codamol every 4 hours. Continue with salt and aspirin mouthwash.
Day 3 – Appointment with GP just to touch base. Helens birthday!
Day 4 – Phil made me coffee in the morning! I thought we’d turned a corner but sadly no. Still feeling really poorly. Thick horrible saliva and a very sore mouth in general. His neck has peeled completely. New very red skin has emerged. He thought he overdosed when I was at the hairdressers, but he hadn’t. There were the exact number of tablets on the tray. He was literally sick at the thought he’d overdosed. He’s only having about 1200 calories through the fortisips. Decided not to bother with the pump feed.
Day 5 ¬– Said goodbye to Sarah. Pulled back the morphine to 4 hours and changed to paracetamol instead of cocodamol
Day 6 – No day has been any better than the day before really.
Day 7 – Today I’m a wreck and can’t see an end to his suffering. Please let it get better!
WEEK 2
Day 8 – Hardly had any Fortisips has lost 10 kgs. Weight is 85kgs! Really horrible saliva today which seems to be brought on by the morphine. Stopped taking it. Went to bed with no pain medications, woke a few times but just used mouthwash. His neck looks almost healed.
Day 9 – Phil has decided not to use morphine at all and I persuaded him to start using the pump feed again. He’s very sleepy today but at least I don’t have to disturb him by giving him medication. Didn’t manage all the 1500 calories! Letter from the hospital postponing Wednesday’s appointment with Dr Ram until June 4th.
Day 10 – Started with a phone call to the hospital. Sick and diarrhoea all night. They suggested water and sickness tablets 3 times a day. Still no pain medication. Not in pain until he’s sick then it burns. Very sleepy today. He had the most amount of thick choking saliva than he’s had before.
Day 11 ¬– More Imodium and anti-sickness needed today. Plenty of water going in the tube. Had one Fortisip at 8am then at 12 started the Nutrison food.
Day 12 – Better than yesterday! Managed to work on the laptop in the morning. Had plenty of calories. Phoned Jenny, she said to come to oncology next Wednesday 28th May for the review. I left him for quite a while to meet Howard and Sally.
Day 13 – Unlucky number indeed. Phil fell over in a rush to open the gate for the bathroom fitter. He cut his head above his eyebrow and cheek. Blood spots everywhere! New carpet!! In a bit of shock I’d say and set his mood back a little. The relentless rain and saliva gloop doesn’t help.
Day 14 ¬– Made sure Phil had 6 Fortisips and 1.5 litres water.
WEEK 3
Day 15 – I hate this fucking cancer recovery!!!! I hate weekends! I lost it today. Step backwards.
Day 16 – Ho hum. Phil tried a tiny bit of water but was sick.
Day 17 – I left Phil for the day, took Charlie to see Sarah at gatwick. Phil had a touch of sickness and diarrhoea again. Managed 5 fortisips though.
Day 18 – Review at hospital. Weight 86.4 kilos. Total loss since the start of treatment is 11.6kgs, just under 2 stone. The dietician said he can continue with Fortisips providing he has at least 6 a day and add milk to it. We saw the new Registrar. He was pleased with his recovery, said he was about where he should be at this stage. No need to be eating food yet, but try to swallow. He said Phil’s neck recovered very well and his throat looked good but he has Thrush on the tongue. Prescribed liquid nystatin to swish and swallow. Next review will be in 4 weeks time.
Day 19 – A bit better today. Went for a little walk down the road. Had 6 fortisips and loads of water.
Day 20 – Same as yesterday
Day 21 – So today Phil wanted to go to work and drive. I went with him, very tired when we got home but then we went for a longer drive in the afternoon.
1 June – It’s been 3 weeks now since radiation stopped, 4 weeks since the last chemo. I have decided to stop the notes until there is a significant change, ie Phil starts to drink or eat.
6 June – Phil has collapsed a few times over the last few weeks. Yesterday I phoned the GP who told him to stop taking Blood Pressure (BP) tablets. His BP Was 95/46. He was very sick, an ambulance was called.
13 June – Haven’t posted for a while. Phil stayed in hospital for 3 nights with dehydration, low potassium and low blood pressure. There was a problem with the kidneys at one stage but fluids sorted that out. Whilst he was in the oncology ward, incidentally, a room to himself, he started swallowing and the mucous thinned out. He started eating, which we’ve continued all week progressing day by day. He drinks water and cups of tea. Today he had an omelet, chicken soup and fish, chips and mushy peas! He has stopped using a spittoon too.
The tube is still in but it won’t be long before it comes out. Nev arrived yesterday which is a great spirit lifter for him.
The next review with Dr Ram is 1 July, he has a GP appointment next week to re-assess his heart meds as his BP tablets have been reduced. He also has to have a 24 hour heart monitor fitted on 8 July as an out patient.
Julie Harmon
