Diary - May

I start my diary which I hope will not be too depressing:-

Tuesday 5th May, 2009
Reported to Nuclear Medicine Department at 2 p.m. for heart checks before my first chemo tomorrow. This took the form of two injections, the second of which was a radioactive substance to enable scanner to view heart. Pretty straightforward and unexciting as I did not even glow in the dark.


Wednesday 6th May 2009
Chemo appointment 2.30p.m. Felt quite calm during the morning as at least I was getting started. On arrival at Ward 1 we were taken through swing doors and along a passageway at the side of some three-sided rooms. It was oddly reminiscent of a scene from “Startrek” with lots of people attached to tubes, sporting variable amounts of hair. Strangely it was quite jolly as most people had friends/family around them drinking tea/coffee. There was a positive air about the place as, after all, these were people who were going through a process to reach a better quality of life. We were taken into an office to be given the necessary information. I found myself struggling to fight back the tears on the subject of hair loss as this has always been the biggest issue for me. I have complained all my life about my fine, frizzy hair so I suppose it serves me right! Was told it would probably start to happen around the third week. Stepped on the pad of the scales for height and weight to be taken but sadly there was no”Scottie” to beam me up. Apparently many people put on weight during chemo because of comfort eating. I did note that the dosage was based on one’s weight which is a good incentive not to!

Taken to a comfy chair to join the other “Clingons”. Was attached to a saline drip into which was injected a few tubes of bright red liquid called “Epirubicin”. Administration of chemo was not stressful. The nurse was very chatty and explained that sometimes the chemo changed one’s taste buds making stodgy food attractive. John looked gleeful and I could almost see a bubble coming out of his head saying “sticky toffee pudding”.


Thursday 7th May, 2009
As someone who normally gets travel sick on an escalator I thought I might have a problem with sickness. Pleasantly surprised to get up in the morning with minimal side effects - slightly spaced out with short, transient feelings of nausea and acid. Decided I was well enough to go down to the gym and did 30/40 minutes (carefully!).

Called in on Jim and Irene to retrieve the “Ming Campbell” book which I had lent them. I had reached the Cancer chapter in his book the week I was recalled myself and I had a ghoulish desire to have another look and compare notes. They spoil me and Jim opened a bottle of fizz to celebrate my good results and toast my ongoing journey.

Finished the day with a walk to the paper shop and also to the Doctor’s. surgery to organise various appointments and hand over forms. Good start.


Friday 8th May, 2009
Had expected yesterday to be a one-off good day. Not the case and again did stint in the gym in the morning. Was able to walk round Ocean Terminal where we had a light lunch.

My ‘walking’ friend, Denise Morrison (not that the rest of them are wheelchair bound!) had great news yesterday. She has been through a similar problem to mine and has just been signed off with a gold star. This is good for my morale as she is a great role model for me


Saturday, 9th May, 2009
Surprised how well the last two days have gone but not complacent! I know there are going to be very difficult days ahead but so far so good. My main side effects have been an acid/reflux sensation and occasional slight hot flush. All very transient and very bearable so can’t complain. I am operating at around 85% - 90%.

John is proactive by nature and after a trip to town I was duly equipped with gloves, anti bacterial hand gel and liquorice just in case I got mouth ulcers. This boy scout approach is a great balance to my “wait till something happens, then panic” approach. Still on a high - decided it must be the anti-sickness pills as I was in danger of having to be scraped off the ceiling! Decided not to do my exercises in case I was on an artificial high. Still awake at 3 a.m. in spite of having the last pill at lunch time.


Sunday, 10th May, 2009
Had lunch at the Dicksons with the other neighbours. I had not expected to be able to go so big bonus! My friend, Liz Wood always says, “Moderation in all things….including moderation” I am very good at the “…including moderation” bit so overdid the eating causing a bit more of the acid problem. My own fault but could not resist all the good Danish food!


Monday 11th May, 2009
Had heard that carrot juice and cranberry juice were good for people with hiatus hernias so thought I would give it a try for my acid problem. A raw carrot did seem to help. If I did not get to glow in the dark at least I will be able to see in the dark! Did not sleep very well and got up for a hot drink around 2.30 a.m. My friend Sheila Johnston,who has been supplying me with books lately, lent me “The Testament of Gideon Mack”. I would recommend this book and found it to have a lot of thought provoking issues - just wish it was not at 3 a.m.!


Tuesday 12th May, 2009
Skipped my exercises this morning as we are meeting John and Fiona Hutchison for a long walk in the Aberdour area. Went back to their new cottage for a wonderful afternoon tea overlooking the Forth. Well - someone had to eat it! Magic Day.


Wednesday 13th May, 2009
Have completed my first week! Completed routine gym work, bringing in some more arm work now that my lymph stitches should have healed. Still a bit of a problem with draining from time to time but I am told it will settle down eventually. Have decided just to ignore it as I cannot pinpoint any specific cause.

Ordered a skip for today. Had problems getting it to the house because of road works at the bottom of the drive not to mention someone else’s tree work. Also they forgot to send a skip with drop down flap. Blue air! Can’t really help in case of infections so will stick to making tea and admiring.


Thursday 14th May, 2009
A bit of housework followed by gym routine. Imagined I was slightly more tired today but acid seems to have subsided. Had a light lunch at Dougall Philips garden centre and went on to a builders yard to check out some materials. John is a frustrated builder but he still has a bit of work to do on the “posterior cleavage” before he will make the grade!


Friday - 15th May, 2009
Rain stopped play outside so did a bit more research round the garden centres for our projects. My builder, turned cook, is making a bread and butter pudding today but judging by the amount of figs and prunes he is proposing to add we had better stay in tomorrow! Felt 95% today and acid seems to have disappeared.


Saturday - 16th May, 2009
Went to the Gyle in the morning. Skipped the gym but went for a long walk instead. Am beginning to feel a bit of a fraud but I know week 3 is looming so will make the most of the good days. Went to the Loch Fyne Fish restaurant in the evening to escape the Eurovision Song Contest.


Sunday 17th May, 2009
Cycled to Ocean Terminal and back with no problems as I am really feeling almost normal again. Had a walk round the Botanical plant sale in the afternoon and even managed a pile of ironing in the evening.


Monday 18th May, 2009
Grandson, Benjamin's 4th birthday this week so all went to Almond Valley Discovery Centre. Fortunately weather was good enough for us to have our picnic outside. Young children are "germ bags" so I was banned from the indoor activity areas. Did not manage to fit in specific exercise today.


Tuesday 19th May, 2009
Sister, Heather visited and we did the gym work together followed by lunch at Craigie's. Waited in for tradesman to fix leak in conservatory in the p.m. Thought there were a few hairs beginning to come out although would not have noticed if I had not been looking for it.


Wednesday 20th May, 2009
Gym routine. Friend Liz picked me up and we went out for coffee. Boring domestic things in the p.m. Am beginning to moult a bit more but have a wig already just in case I am caught short (so to speak!) Have been sleeping quite well recently.


Thursday 21st May, 2009
Took a trip to Anstruther this morning and had fish and chips in the acclaimed Anstruther Fish Bar. They are allegedly the best in Scotland and certainly a treat as it is not something we have very often. Had a short walk as we had to be back for dental appointment. Gym and housework later in the day. Hair coming out in amounts something akin to a dog moulting. Am considering making an appointment soon to get it off as it has to go and there is no point in prolonging the agony.


Friday 22nd May, 2009
I have been and gone and done it! After my exercises this morning I felt that the hair loss was gaining momentum. Managed to get an appointment with Turvey & Co at 2.30 to get my head shaved and wig fitted and cut to me. It is a bit more...er..... Mrs. Doyle (Father Ted) than the blonde bombshell I had hoped for but O.K. Can't wait to introduce Mrs. Doyle to the younger grandchildren whose candour can be relied on.


Saturday 23rd May, 2009
Looking forward to picking up eldest daughter, Marsali, who is staying until Tuesday. Had a relaxing day and evening and did not manage to fit in exercise.


Sunday 24th May, 2009
Took shampoo into the shower this morning which read "for fine flyaway fair". Now there's a challenge although perhaps a bit tardy as the fleece has already flown! The three of us met with Mhairi and two children at Almondell country park for a picnic. Played "rounders" (4 year old style) and had a long walk later.


Monday 25th May, 2009
Had my blood test done at the local surgery. It will be send to the Western General who will confirm that I am well enough (or not) to get my second chemo on Wednesday. Took Marsali to St. Andrews for the day where we had lunch at the Seafood Restaurant and a walk. Am a bit anxious about my second chemo as the first one has gone so much better than I expected.


Tuesday 26th May, 2009
Morag's baby due today but no word as yet! Back to gym routine and felt fine. Was shocked to find out from the hospital that my blood count was marginal and it will have to be redone before they give me chemo tomorrow. I do not know how that can be when I feel fine! However, I am just thinking that I may have had a couple of "wee" drinks the night before my blood test which may have been the problem. Sorry to see Marsali going back home today as we enjoyed her visit and catch up. Had coffee with Jette in the afternoon.


Wednesday, 27th May, 2009
I am really not feeling in sparkling form today for some reason so had a lazy morning - slight nausea and woolly headed. Gave Morag a call as it is her birthday. She is feeling the same so perhaps I am coming out in sympathy? Reported to Ward 1 for retake of my blood count which has jumped up again. Normal would be 2 and mine is 4.48 which is good. Concluded that it must have been the alcohol which I had consumed on Sunday night which caused the rogue reading. Nurse also suggested that spicy food does not mix well with chemo. That would probably explain why I was not feeling great today - I made a curry last night! I have now had two of my four nasty chemos so I feel I am making progress.


Thursday, 28th May, 2009
Slept till 8 a.m. and feeling really good today. Thought I could perhaps dispense with the pills but on consulting with the medical people they said definitely not. I have to take steroids along with anti-sickness pills for three days. I have cheated a wee bit today as it was after 11.30 before I had the dialogue so I effectively missed the breakfast slot. Will be a good girl tomorrow though. Did my 40 minutes in the gym carefully as it was the day after my chemo.
Did some relevant filming in Edinburgh for the multi-media DVD I am making up in connection with John's family tree and business life. Visited Suzanne for a coffee.


Friday 29th May, 2009
In spite of only having half dose of my steroids I hardly slept last night. Even the normal soporific effect of T.V. did not subdue me. I am not too worried though as at least I can rest during the day if I have to. Strangely I do not feel too bad today and have completed my usual gym exercise and done the food shopping. My heart does go out to anyone having to cope with this as well as a young family and a job. Did debate whether or not I should skip one lot of the pills again today but the medical people were adamant so better tow the line as it is only for 3 days in total. I do hate taking all the pills - steroids and anti-sickness to counteract the chemo and an acid reliever to counteract the steroids. It is a bit like the "House that Jack Built"!
In spite of my "builder" having shifted some 45 barrow loads of granite/sand he has also helped me with some heavier housework today. He has just bought a new piece of equipment which cleans under the bed. It is a great "boy's toy" - and I think it is a great idea!!


Saturday 30th May, 2009
Slept better than last night although not great. I have now finished my three days of pills so I know that things will improve again. Went into town and did a bit of shopping. As we had walked around quite a bit I decided that would be enough exercise for today. Had a lazy afternoon in the garden under an umbrella with my only problem being negotiating an ipod and pair of glasses over "Mrs. Doyle". Finished the day with a barbeque in the garden. This recuperation thing is not so bad!


Sunday, 31st May, 2009
Gym in the morning. The lymph node area has been turgid on brief occasions since the second chemo but it is generally improving all the time. Great word "turgid" as it describes the condition exactly. I am working my way through the alphabet of big words so after "S" for soporific" I have reached "T" today. Went to "Taste of Edinburgh" at Inverleith Park this afternoon which was a diversion and pleasant day out. Came home with too many biscuits and other goodies!