The Saga Begins
Monday 20th March 2023
It starts this week!
All the waiting since the dreaded diagnosis last February
Atrial fibrillation, numerous conflicting drug combinations and the final kick in the cladgers of a Leukaemia diagnosis
Still here we are at last all ready for the off!
I start my chemotherapy tomorrow at long last.
Tuesday 21st March 2023
All set for the off. 0930 Portesham Surgery and my blood test for Thursday’s transfusion
Compulsory Covid test completed and registered, test strip in pocket all ready
On the way home, received a surreal phone call ‘Mr Ayers , when did you last have a blood test? Just now. ‘No when before that’
‘a fortnight ago ‘
‘That’s no good, did no-one ask you to have another done ready for the afternoon?
‘No’
In that case we can’t go ahead today. Start tomorrow instead’ We’ll extend by one day next week
Blimey. Cancel my lift today. Look at my fan club list for a suitable volunteer for next Thursday
Bob’s Bulletin No1 and the Bob’s Buddies Spreadsheet consulted and a short flurry of phone calls ensued.
Result! I’ll only have had one chemo treatment before the pub Quiz at the New Inn tomorrow, shouldn’t be too exhausted after all
Wednesday 23rd March
1st test for my chauffeur team. Will she turn up. Does my system work.
Yes, Yes. Uneventful journey and a good welcome into the Dreaded Fortuneswell Clinic at Dorchester County Hospital (DCH)
Yet more blood tests and an anti-emetic tablet. Nice cup of tea offered and a lengthy wait to assess my exact potion and mixt it up.
The jab was peculiar, a viscous white liquid vigorously rubbed to loosen it up in two syringes and then painlessly inserted under the skin of my distended belly (all my diet and PT now long gone) and a 2” square plaster Araldited on to the two microscopic pin pricks. I am dreading the removal of the plaster. Note to self, SHAVE your tum without delay
My understudy for running tonight’s quiz was struggling to turn up, so I played the hero and after an excellent Belly Pork and Mash meal, ran possibly my best ever quiz, all based on musical topics. I announced my immediate withdrawal from polite society and have now commenced my Purdah
Purdah and a restricted diet now follow. Life without Offal , Blue cheese, Shellfish and some fruit and veg, might sound nice, but not to a committed omnivore! I suppose life without tea, coffee, alcohol will do me good, but that first pint of Youngs Special, possibly next year, will be nectar!
Arrived home after pacing up and down the bar at the pub, utterly exhausted and ready for the transfusions tomorrow
Thursday 24th March
Dragged myself to the Medical Day unit and was met with the news that my haemoglobin was really bad and I needed 3 units of blood. 3 Units @ 3 hours each was too long and the 3rd at 2 ½ hours meant that the chemo had to be squeezed in somehow. This was done at 1500 and a twinge of regret has crept in, because the second jab hurt and has caused an angry rash across my tum. You’ve guessed it, I didn’t have that shave!. Another plaster hammered home and the removal to be dreaded.
Long tiring day, doing apparently nothing
Friday 25th March
A golfing pal dropped me off and picked me up for the afternoon session of Chemo. Nice cup of tea and a long wait for my jabs. Grrrr No shave and another vicious plaster welded on.
Notified that my blood was really low and called in for an extra spa day in Dorchester on Monday
First publess evening in my isolation.
Saturday 26th March
Nothing much happening. Able to go shopping and keeping my distance
Sunday 27th March
Sat up in bed wondering when to pluck up the courage to pull the 3 plasters off. Do I do the macho thing and rip them off like a man? Do I get in the bath and soak them off like a wimp. I really wish I had had that shave! Sat on the loo and went for it. Rip, rip rip, never again
Got in the shower and shaved my whole stomach. Took about 4 rinses of the razor and cost me a new blade.
Ran Jean to hospital for endoscopy
Driving still ok, each way from the hospital
Monday 28th March
Arrived for an extra spa day, two more units of blood today and called for my lift to hospital in the morning instead of the afternoon chemotherapy session only
Nurse called in on me during the second bag of blood to give the chemo jab. Pointed out the bruising and advised that a hydrocortisone cream would be provided to de-angrify my tum.
I amused the nurse, who was welding the new plaster on and discussed the future removal. Only keep the plaster on for a minimal period and soak and remove in the shower. Sound advice as it happens
Felt sick for the first time on arrival home. Took my anti sickness tablet and about an hour later had some chicken and potato bake from the previous day. My word, did I feel ill? Within 5 minutes and 4 retches later the whole of my supper was reposing in the downstairs loo. 2 hours later, I risked a lamb stifado with cous-cous and held on very well and did ok in Mastermind and University Challenge
Tuesday 29th March
Shower and spray with soap. Peeled the plaster off and must have missed bits of hair when shaving. Not too painful but wound irritating, cream arriving soon
Discussed the previous evening’s biliousness and it appears that creamy eggy food can coalesce in the system and bounce right back at you. Lessons will be learned ! The difference between me and various arms of government is that I will genuinely not repeat the mistake!
Met a nice chap in the adjacent chair having his treatment, ex navy bloke whose son has just joined the local police. After a long chat with him, the nurse realised I was still there and said that I could have gone ages ago. I said that ‘Orders is Orders’ and I hadn’t been dismissed!
It appears that once the jabs are in, one can go!
Wednesday 30th March
Chemo only today and leaving the dreaded plaster on for the minimal time seems to work. My lift to and from hospital had discovered the Damers Restaurant. Excellent location for my future lifts to lurk in and enjoy a coffee that is half the price of a Starbucks. It is also just 50 yards from my treatment unit.
I missed the specialist nurse, who had left a message that I was to have platelets as well as blood in the morning We went to Weymouth Pavilion to see the Ukrainian State Opera perfom Carmen. Good production and the display of the flag and anthem afterwards and a rendition of their national anthem was moving and uplifting . On the subject of moving, the chemo side effects probably kicked in again, this time 2 bouts of horrendous diarrhoea. The second bout conveniently finished and enabled me to take my seat as the opening curtain went up.
Walking across the car park later was an ordeal. After 80 yards I was frozen and told off for being a Jessie. I didn’t warm up however and went to an early night, shivering uncontrollably and armed with a hot water bottle . A nasty rasping cough and tightening throat was a concern
Thursday. 30th March
My lift to hospital had been a senior nurse and she told me that platelets suggests that my white blood cells were possibly no more and that I possibly had enough red blood. After the usual blood a bottle of what looked like wee was produced and that was administered over the next half an hour.
Fortified with a wee and blood transfusion I went for my last chemotherapy injections on this cycle. I now have my dates and times for my next chemo sessions, so can recruit the next 7 lovely volunteers from my list of supporters.
Got back tired and found a flat tyre on the Land Rover . Now wondering which duty Hercules had put the wheel on and how I can get the car out of our yard, ready for our barn gates to be finished
Friday 31st March
Horrendous Storm overnight and into the morning. Lay awake and still have to keep getting up every hour for a wee. Lay awake thinking about the tyre on my car, The barn engineer calling , and two friends calling in the morning to do a large garden job for me. Luckily I had defrosted a load of superb Denhay bacon for their rewards.
At 0400 I finally cracked and called all works off , so as to take it easy and have a bacon roll fest instead. Alex and Ian, I felt were secretly relieved to have bacon rolls and coffee instead of a heavy gardening job. Alex saved me by changing the Land Rover wheel and moving some heavy feed sacks.
The rest of the day passed with my feeling completely washed out. Mid evening was towel throwing-in time and an early night.
Saturday 1st April
My self imposed purdah, precluded any thoughts of practical jokes, but I woke up feeling quite well. Kept out of everyone’s way at a couple of shops and then felt able to assist with some jobs in the house.
Have started to itch around my back and scalp and the cough has come back a bit. I have also noticed that some foods and drinks are tasting funny, a sort of soapy taste. Stuck to a ham baguette and tea
The Shiptonites ride again for the last time this season at the golf club. Annoyingly the new caterers have let themselves down. 5 of us had a meat pie, my vegetable lasagne was poor and the lemon sponge fingers pudding was horrible. The lime juice, resembled Fairy liquid, but didn’t taste as nice. Quiz was great and I survived the evening, but crashed out as soon as we got home. Managed the stairs better than for the last couple of months
Sunday 2nd April
Woke up ready to tackle the garage, which is squalid tip. Managed to put away a load of stuff that had been dumped in there over the last 6 months, September’s hospitalisation with serious infections, made me lose the will to live as far as work outside was concerned. Achieved a great deal, so that when our new electrician comes he will not run away in horror
Monday 3rd April
Went to the local post office and was told I was looking much better. I felt good and went to the tip and then on to the dealers to return my dodgy compressor from the garage.
I had commissioned the compressor and was looking forward to using it on Thursday and Friday for 2 punctures, so was not best pleased to receive a phone call that I had wound down the pressure regulator so that it wouldn’t even start. Classical dummy operator error, but I think my powers of concentration had let me down re the instructions. I’ll blame the chemo!. On second thoughts I will be going back there. Arrived to announce that I was here to collect my ‘Buffoon of the Week’ Award
The man loaded it up for me and I managed to get it out of the car but not able to lift it into position. Collapsed in a heap and rested up for half an hour, before tackling the new Land Rover tyre ready for the MOT on Wednesday. The friend who changed the wheel for me is 31 years younger than me, and under my supervision had done up the wheel nuts. I managed it after an hour and a quarter with a cup of tea and three rest breaks. 2 years ago I could have undone those nuts with my eyelids. What a Wimp, I have become . After dinner, I felt as though run over by a steamroller and had an early night
Tuesday 4th April
Woke up feeling good yet again. After my cocktail of tablets went to the doctors for my weekly blood test, ready for my weekly ‘spa day’ as Jean calls my transfusions, plural . 3 hours for one unit, 6 and a half for 2 units and the Biggie 8 and a half hours.
This time it was exciting, two nurses one of whom, was armed with a new gizmo for me. A finger pricker machine and a lecture about pre-diabetes type two. If I am at risk, it has crept up on me. Now will be busy swotting up on diabetes, and see if my diet, together with my chemo diet has to reduce me to eating cardboard and drinking fizzy water.
Continuing to feel better each day, swelling and chemo jab marks are fading. Have continued to itch around the head and back around the waistband. Food is not very appetising and am permanently thirsty.
Wednesday 5th April
Visit to a wool mill. Woke up again with a raging thirst and heavily furred tongue. I blame the chemo!
Then off to a photo exhibition run by a friend. Fish and chips in Lyme. Taste buds not performing very well.
Arrived home and suddenly crashed out. Felt utterly exhausted . Mid evening recovered and bed at a normal time. Gizmo reading of 7
Thursday 6th April
Really thirsty again and heavily furred tongue. Had pre transfusion shower and noticed a horrendous rash all over my neck, shoulders and back. Arrived feeling well and complimented on my apparent recovery. Had one unit and a platelets dose. Gizmo reading of 7
Friday 7th April
Horrible taste in the mouth and furred tongue
Arranged to pick up a shed as a new chicken house. Managed to move some small pieces of the shed down a narrow alley. Carrying down the hill ok, but walking back up was difficult
Tired later and needed a sleep in the afternoon
Gismo reading of 7.3
Saturday 8th April.
Eggs delivered to one address, second address, a sick bay, both friends laid up with a vomiting bug. Visited by another member of the fan club, who is now signed up for Bob’s Bulletins and lifts to hospital. Gizmo reading of 7.3
Sunday 9th April
Gizmo showing a fault, using a used test strip
Monday 10th April
Gizmo showing the same fault, will give up with it
Tuesday 11th April
Horrible thirst in the morning. Blame the chemo!
Blood test at Portesham. Second nurse has released me from the Pre-Diabetes tests on a daily basis. I was offered to join the on-line diabetes help group, later advised that my blood sugar is below the limits for the programme.. Gizmo discussed. Seems that the test strips are just about out of date. Keep the machine in case more tests are needed. Running ot of stem, so wonder how many units of blood needed on Thursday
Wednesday 12th April
Raging thirst most of the day. Feeling really tired with legs feeling like lead. Slept several times, no energy at all
Thursday 13th April
Thirsty and heavily furred tongue. Platelets and two units of blood. Not surprising considering how exhausted I was yesterday. At lunchtime I was told only one pack of blood today, felt like a half day holiday. Very sleepy after evening meal and an early night
Friday 14th April
Thirst and heavily furred tongue. Tremendous back-ache. I blame the chemo!
Ok walking about despite the bad back. Contacted Amy, at Southampton Hospital, possibly 3 donors in the wings. Might commence the dreaded isolation in about a month. Fingers crossed
Saturday 15th April
Woke up with a very painful back again. Shopping and then able to walk around the garden to alleviate back pain. Used the loo 3 times during the day
Sunday 16th April
Sent out the lift requests for the start of the chemo again on Wednesday. All of the volunteers are ready and John Grantham from Burton has taken up the last chemo for the second week.
Feeling well and have ordered the bite for the garage truck. People will see me from miles away in the spiteful yellow Ford Ranger Pick up ! Handed over the quiz papers to Alex Drew, who has undertaken to run Wednesdays quiz for me
Monday 17th April
The usual thirst upon waking up. Off to get the new horrendous truck signed over to me. Driving ok and getting ready for the new week of chemo. Visit to Washingpool Farm for some quality food for the diet.
Tuesday 18th April
Blood test at Portesham, ready for my ‘spa day’ at Dorchester. Ian Ferguson helped me in the garden, saving the glasshouse from being swamped with overgrowth
Wednesday 19th April
Ist day of round two of the Chemotherapy. In addition to the Azacitidine, expected, I arrived to be told that my immune system is very much down and I am to have 7 jabs of Filgrastim!. Straight into the stomach and administer at the weekend by yours truly. An ingenious retracting syringe was demonstrated for me to use on myself
Side effects were described, which do not sound nice, including bone pain. No effects and a very good steak dinner
Thursday 20th April
Woke up with a raging thirst and after 20 minutes the most peculiar pain in the back at the top and at the base of the spine. A very uncomfortable half hour with a literal bone pain in the shoulder blades and cervical area, as well as the coccyx. Eventually wore off after the paracetamol kicked in
Two lots of blood today, but no platelets and then the two chemo jabs, so a long ‘spa day’
Appointments for the next 5 weeks supplied
More to Follow