Friday 26 July
Woke up early this morning and felt quite good. After breakfast Wendy cycled into Kingston to go to the market and buy green groceries for a farewell lunch the Methodists were organising for their lay pastor on Sunday. I stayed at home and got on with my blog. When Wendy came back with all her salad food we had lunch followed by coffee, I sat in the armchair to drink mine. However when I woke up Wendy had gone out. I guess I needed an hour or so of sleep, she left a note to say that she had left for Sainsbury's. Quite a good restful day as we were going to the Olympic park with our friend Liz tomorrow to see Mo Farah, Usain Bolt and Jessica Eniss-Hill competing in the Diamond League athletics event.
Saturday 27 July
Woke up early and decided to have a shower and as we were going to be out all day I changed my stoma bag to a drainable one and made sure I covered the air vent to stop water getting in to it while in the shower. In order to have a shower you need to be able to keep your PICC dry otherwise there is a strong risk of infection. This means pulling a rectangular shaped bag with a largish hole one end to fit round your upper arm and a small hole at the lower end to fit over your lower arm into the right position. So stoma bag vent blocked, PICC protected by a stretchy plastic bag it is safe to get into the shower. After the shower I got dressed and went down for breakfast feeling fresh and well and ready for an interesting day ahead. We breakfasted on cereal and toast, prepared a packed lunch with plenty of water and left home at 10.30 am to catch the 10.50 am train to London Waterloo. From there we caught the Jubilee tube line direct to Stratford and the Olympic park. It was a great day out and gave me a chance to forget about whatever else is going on and enjoy life. This was the first athletics event that I have ever been to and it was interesting to see how they fit all the different events into a 3 hour slot, (A cheer goes up where do you look?). A fabulous stadium but looks a bit large to be used by West Ham as a football stadium!!
Seem to be on the up at the moment I wonder what tomorrow will bring.
Sunday, 28 July 2013
Friday, 26 July 2013
Update 23 to 25 July
Tuesday, 23 July.
Woke up this morning feeling generally OK and after breakfast updated my blog. Around mid day I started to feel tired, so I stretched out on the bed for a rest but when I woke up I had a bit of a shock - my stoma bag had filled with air and excretion and was almost forcing itself off my body. Quickly I got some water and was just about to change my bag when cousin Joan rang from Australia, I said I was dealing with an emergency and she agreed to ring back about one hour later. Removing the bag the excrement was unusually soft -- I had diarrhoea!! I had been warned that this was a high possibility, so I decided to use a drainable bag this time, I hadn't got one prepared so I had to mark and cut out the hole to fit it around my stoma causing me delays and worrying about a sudden rush of soft excrement before I could get the bag attached (I should have done the preparation before removing the bag, folks!!). Everything worked out fine and I went down for lunch and as promised Joan rang to see how I was getting on and to say she found the blog site a useful way of keeping in touch. She said she had recommended to Ann "Dissolution" by C. J. Sansom set in the reign of Henry the eighth and featuring the lawyer Matthew Shardlake. I read a few more pages of the book before going to bed each night at around 11.30 pm.
Wednesday 24 July.
I woke two or three times during the night to drain my bag that had filled up with loose excrement each time. That morning at 6 am Wendy said that I should be taking the tablets the pharmasist had given me. She went down to get them and started me off with 2 2mg Loperamide Hydrochloride capsules and the she made sure that I took the rest of them one at a time every two hours until 6 pm. Wendy has been fantastic through this week making sure I have my treatments and logging my blood pressure for next Monday. The rest of the day went fine with the diarrhoea under control.
In the afternoon I had to go back to the Sir William Rouse Unit at 4 pm to have my PICC line cleaned. As my daughter Alison was working a 12.5 hour shift as a student nurse in Alexandra Ward of Kingston Hospital I had arranged for her to come and see how the device should be cleaned. After the cleaning the sister on the Chemo Unit said that before Alison could do the cleaning at home she would have to come back another time and be monitored by the Sister to ensure that she was competent to do the PICC line cleaning (Something to do with Insurance).
Thursday 25 July.
I have found so far this week that I now tend to get tired very easily without doing anything particularly strenuous. Most days this week I have had to have a short 1-2 hour sleep at some point during the day. I hope that this will decrease as the week goes on. I arranged to take Alison into Kingston to set up a savings account for her at a Building Society. After that we shared a banana split ice cream at Creams, I had to go to the Hospital as Alison said my PICC line looked a little inflamed and was oozing. It turned out to be OK. Later that evening we all went to the Thursday evening Curry Club to enjoy the company of our friends from the URC. I am trying to keep doing those things I would normally do as far as possible including cycling and gardening whenever possible.
Woke up this morning feeling generally OK and after breakfast updated my blog. Around mid day I started to feel tired, so I stretched out on the bed for a rest but when I woke up I had a bit of a shock - my stoma bag had filled with air and excretion and was almost forcing itself off my body. Quickly I got some water and was just about to change my bag when cousin Joan rang from Australia, I said I was dealing with an emergency and she agreed to ring back about one hour later. Removing the bag the excrement was unusually soft -- I had diarrhoea!! I had been warned that this was a high possibility, so I decided to use a drainable bag this time, I hadn't got one prepared so I had to mark and cut out the hole to fit it around my stoma causing me delays and worrying about a sudden rush of soft excrement before I could get the bag attached (I should have done the preparation before removing the bag, folks!!). Everything worked out fine and I went down for lunch and as promised Joan rang to see how I was getting on and to say she found the blog site a useful way of keeping in touch. She said she had recommended to Ann "Dissolution" by C. J. Sansom set in the reign of Henry the eighth and featuring the lawyer Matthew Shardlake. I read a few more pages of the book before going to bed each night at around 11.30 pm.
Wednesday 24 July.
I woke two or three times during the night to drain my bag that had filled up with loose excrement each time. That morning at 6 am Wendy said that I should be taking the tablets the pharmasist had given me. She went down to get them and started me off with 2 2mg Loperamide Hydrochloride capsules and the she made sure that I took the rest of them one at a time every two hours until 6 pm. Wendy has been fantastic through this week making sure I have my treatments and logging my blood pressure for next Monday. The rest of the day went fine with the diarrhoea under control.
In the afternoon I had to go back to the Sir William Rouse Unit at 4 pm to have my PICC line cleaned. As my daughter Alison was working a 12.5 hour shift as a student nurse in Alexandra Ward of Kingston Hospital I had arranged for her to come and see how the device should be cleaned. After the cleaning the sister on the Chemo Unit said that before Alison could do the cleaning at home she would have to come back another time and be monitored by the Sister to ensure that she was competent to do the PICC line cleaning (Something to do with Insurance).
Thursday 25 July.
I have found so far this week that I now tend to get tired very easily without doing anything particularly strenuous. Most days this week I have had to have a short 1-2 hour sleep at some point during the day. I hope that this will decrease as the week goes on. I arranged to take Alison into Kingston to set up a savings account for her at a Building Society. After that we shared a banana split ice cream at Creams, I had to go to the Hospital as Alison said my PICC line looked a little inflamed and was oozing. It turned out to be OK. Later that evening we all went to the Thursday evening Curry Club to enjoy the company of our friends from the URC. I am trying to keep doing those things I would normally do as far as possible including cycling and gardening whenever possible.
Tuesday, 23 July 2013
22 July
Woke up about 5.30 am feeling really bad, I had an excess of mucous at the back of my throat which I kept trying to clear and was causing me to gag. But even worse was wind coming from my gut that I had to keep belching to clear, this left me with a sharp pain in the middle of my chest. I tried going back to sleep but couldn't get comfortable and after 20 or 30 minutes the symptoms came back and again I had to sit up and keep belching and clearing my throat. Eventually I did drop off for a short while but by 7.00 am I decided to get up and set up a visit to my GP. Her surgery opens at 8.30 am but after 10 minutes of phoning I could not get connected so having had breakfast I cycled to the surgery and saw the receptionist and got an appointment for 11.10 am straight away ( This is how we normally get appointments on the day). Meanwhile I got together the records of my daily blood pressure that I had been taking to show my GP as instructed by my nurse on Wednesday.
The GP that I saw was a young male locum, normally all our practice GPs are female. Firstly he checked my blood pressure which he observed was higher than the readings that I was taking. The reading was something like 163/80 and he decided that I should immediately start taking blood pressure tablets. He then checked my ears as I was having trouble with excess mucous and blocked ears and he found that only my left ear was blocked up with wax so he gave me oil to put in the ear three drops three times a day. He couldn't do much about the wind and pain in my chest as he felt this was entirely due to the chemotherapy but I could take some antacid (chalk) tablets if it made me more comfortable. Finally he checked my stomach and agreed that it was nice and soft. (soft is good, hard lumps are bad I guess).
Today the effects of the chemo have kicked in hard and I have felt quite tired and had a 2 hour sleep after coming back from the GPs and a further 2 hours in the afternoon and then after our evening meal I settled down to read a book borrowed from my cousin Ann called "Dissolution" a crime novel set in a monastery at the time of Henry the 8th. What will tomorrow bring?
The GP that I saw was a young male locum, normally all our practice GPs are female. Firstly he checked my blood pressure which he observed was higher than the readings that I was taking. The reading was something like 163/80 and he decided that I should immediately start taking blood pressure tablets. He then checked my ears as I was having trouble with excess mucous and blocked ears and he found that only my left ear was blocked up with wax so he gave me oil to put in the ear three drops three times a day. He couldn't do much about the wind and pain in my chest as he felt this was entirely due to the chemotherapy but I could take some antacid (chalk) tablets if it made me more comfortable. Finally he checked my stomach and agreed that it was nice and soft. (soft is good, hard lumps are bad I guess).
Today the effects of the chemo have kicked in hard and I have felt quite tired and had a 2 hour sleep after coming back from the GPs and a further 2 hours in the afternoon and then after our evening meal I settled down to read a book borrowed from my cousin Ann called "Dissolution" a crime novel set in a monastery at the time of Henry the 8th. What will tomorrow bring?
Up date 18 July to 21 July
Thursday After a very tiring day on Wednesday we surprisingly woke fairly early Thursday morning, I had not been strangled in the night by the PICC line that went across my pillow so that the pump could be tucked in at the bedhead. As I was feeling alright I decided to do some jobs a little pruning on the Wisteria which was getting very ragged as usual and then on the allotment I tackled the weeds around the onions before lunch. Wendy was getting a bit cross with me because it was so hot and I was in danger of overheating. So after a light lunch we decided to go to Kingston as Wendy needed to buy a few things in John Lewis and Lakeland and it would be relatively cooler in the shops. We got back by 4.30 pm as I had to take a couple of steroid pills with a sickness tablet with some food before 6 pm., apparently the steroids would prevent me from getting to sleep if I took them later than that. Generally I have felt fine today with no noticeable effects from the drugs.
On Friday I had to go back to the Sir William Rouse unit to have my pump removed roughly 48 hours after it was attached. I arranged for Alison who is on a nursing PGDip course at Kingston University and is gaining nursing experience in Alexandra ward at the Hospital to come and see the pump being removed. Then if the clinic approved she could remove the pump at home and take it in for disposal. Carrying the pump had not been a problem as most of the time it was in my trouser pocket. Although I needed to have a shower I didn't feel like having one with the pump connected to the PICC line as I could not see how to keep it dry and where would I put the pump when I had nothing on? So for a couple of days I was having a strip wash with a wet flannel. Still not feeling the effects of the drugs.
Saturday. Wendy was spending most of the day at Church helping with Messy Church the last one for this term. As I normally try to go cycling with the club on Saturdays and I was still feeling good I decided to out for a ride. I rode out to Non Such park in Cheam, via Kingston, Berrylands and Worcester Park, to join the group at 2 pm. I joined the long riders and we cycled off through New Malden, Richmond Park, Ham and finishing at Teddington Lock where we stopped for tea. I rode on with the group to Bushy Park where I left them and headed for Hampton Hill to watch a bit of cricket and see the Club's new pavilion. Still feeling good and in the evening Paul and Nicola came round for a barbeque, the weather still remains hot!!
Sunday. Seemed to have a bit of a problem with the development of mucous in my throat which occasionally made me gag as though I was being sick. Went to Church but had difficulty singing as my ears seemed to be blocked up and to me my voice sounded peculiar. My first signs of a reaction to the drugs. As we both had busy days yesterday we decided to lounge around and have complete rest and watch a bit of the Tour de France and Froome's victory parade into Paris.
On Friday I had to go back to the Sir William Rouse unit to have my pump removed roughly 48 hours after it was attached. I arranged for Alison who is on a nursing PGDip course at Kingston University and is gaining nursing experience in Alexandra ward at the Hospital to come and see the pump being removed. Then if the clinic approved she could remove the pump at home and take it in for disposal. Carrying the pump had not been a problem as most of the time it was in my trouser pocket. Although I needed to have a shower I didn't feel like having one with the pump connected to the PICC line as I could not see how to keep it dry and where would I put the pump when I had nothing on? So for a couple of days I was having a strip wash with a wet flannel. Still not feeling the effects of the drugs.
Saturday. Wendy was spending most of the day at Church helping with Messy Church the last one for this term. As I normally try to go cycling with the club on Saturdays and I was still feeling good I decided to out for a ride. I rode out to Non Such park in Cheam, via Kingston, Berrylands and Worcester Park, to join the group at 2 pm. I joined the long riders and we cycled off through New Malden, Richmond Park, Ham and finishing at Teddington Lock where we stopped for tea. I rode on with the group to Bushy Park where I left them and headed for Hampton Hill to watch a bit of cricket and see the Club's new pavilion. Still feeling good and in the evening Paul and Nicola came round for a barbeque, the weather still remains hot!!
Sunday. Seemed to have a bit of a problem with the development of mucous in my throat which occasionally made me gag as though I was being sick. Went to Church but had difficulty singing as my ears seemed to be blocked up and to me my voice sounded peculiar. My first signs of a reaction to the drugs. As we both had busy days yesterday we decided to lounge around and have complete rest and watch a bit of the Tour de France and Froome's victory parade into Paris.
Friday, 19 July 2013
17 July, Day 2
The first day of my second round of chemotherapy treatment at the Sir William Rouse clinic in Kingston Hospital. I had to be there for 9.00am and got there on time only to have to wait until 9.45 am for the doctor to see me and confirm what treatment I was due to have, there was also a check of my bloods to make sure that everything was normal, no low counts etc. After signing to agree to the treatment I was let into the clinic. This is a large room with high windows on two sides and reclining chairs arranged around three sides for patients to relax whilst being infused with highly toxic liquids.
My nurse for the day was Sunam who was very thorough in everything that she did. She took me through the process that I was to undergo which involved the use of three different drugs, the first would be a 90 minute infusion of irinotecan, followed by a two hour infusion of Aflibercept (folinic acid) a drug designed to make the irinotecan more effective by lowering the blood supply to the cancer cells (My understanding). The next drug would be given in two doses a short 30 minute infusion of 5FU mixed with glucose. Finally I would be fitted with a pump that contained a much larger dose of 5FU which was connected to my PICC line and had to be taken home to be returned in 48 hours for disconnection providing it had been fully discharged into my body.
Before the treatment could start I had my blood pressure checked to make sure it was within the allowed limits of 140/90, my initial reading was 147/80. Out of range need to wait for me to calm down after hearing about all the nasty side effects that these drugs can cause such as the possibility of heart pains and tightness in the chest and the need to immediately dial 999. 15 minutes later the test was repeated this time 143/83, still no go and the need to consult with the doctor, doctors are always busy so it was a wee while before the decision was made to go ahead provided that I monitored my blood pressure over the next week and took readings to my GP to see if anything needed to be done.
The time was now 12.15 pm and the treatment time including flushing out with saline between drugs etc. meant that I would finish around 5.30 pm. Wendy and I eventually left at 5.40 pm to catch the buses home to arrive at 6.50 pm because of the heavy traffic. During diner I took the first of my sickness pills as there is a high possibility of feeling/being sick.
Bed time was interesting where do I put the pump when I am in bed? Finally we decided that it should go behind my pillow so that the PICC-line came up from my left shoulder through the top of my night wear and onto the pillow. That settled we had a well earned sleep after a very long day.
My nurse for the day was Sunam who was very thorough in everything that she did. She took me through the process that I was to undergo which involved the use of three different drugs, the first would be a 90 minute infusion of irinotecan, followed by a two hour infusion of Aflibercept (folinic acid) a drug designed to make the irinotecan more effective by lowering the blood supply to the cancer cells (My understanding). The next drug would be given in two doses a short 30 minute infusion of 5FU mixed with glucose. Finally I would be fitted with a pump that contained a much larger dose of 5FU which was connected to my PICC line and had to be taken home to be returned in 48 hours for disconnection providing it had been fully discharged into my body.
Before the treatment could start I had my blood pressure checked to make sure it was within the allowed limits of 140/90, my initial reading was 147/80. Out of range need to wait for me to calm down after hearing about all the nasty side effects that these drugs can cause such as the possibility of heart pains and tightness in the chest and the need to immediately dial 999. 15 minutes later the test was repeated this time 143/83, still no go and the need to consult with the doctor, doctors are always busy so it was a wee while before the decision was made to go ahead provided that I monitored my blood pressure over the next week and took readings to my GP to see if anything needed to be done.
The time was now 12.15 pm and the treatment time including flushing out with saline between drugs etc. meant that I would finish around 5.30 pm. Wendy and I eventually left at 5.40 pm to catch the buses home to arrive at 6.50 pm because of the heavy traffic. During diner I took the first of my sickness pills as there is a high possibility of feeling/being sick.
Bed time was interesting where do I put the pump when I am in bed? Finally we decided that it should go behind my pillow so that the PICC-line came up from my left shoulder through the top of my night wear and onto the pillow. That settled we had a well earned sleep after a very long day.
Thursday, 18 July 2013
Day 1, 16 July 2013
This is the beginning of my second round of chemotherapy treatment for bowel cancer. It follows on from my surgery on 12 March to remove the tumour in my anus and provide me with a permanent stoma. This operation went very well and my quality of life post-op has been very significantly improved and I thank the whole surgical and the nursing support teams at Kingston Hospital for their excellent work. Following the operation a CT scan showed that the cancer had spread into the rest of my body hence the need for more palliative chemotherapy which started today 16 July 2013.
I had to be at the Royal Marsden, Sutton for 9.00am and we left home at 8.15 am arriving 5 minutes late to be greeted by the nursing staff who were going to fit a PICC line into a vein on my upper arm leading into a larger vein near my heart. The PICC line is a Peripherally Inserted Central Catheter which can be left in for at least one year and saves having to have a cannula fitted for each treatment, it also allows for bloods to be taken without needles, Yes!!
The whole procedure was done under local anaesthetic by a brilliant nurse, Lisa, who had explained everything clearly to me in advance and was very proud of the recently acquired online system that was able to plot the progress of a small magnet in the end of the line which allowed her to get the end of the PICC line in exactly the right place. This had to be confirmed by X-rays and signed off by the doctors before I left at around 12 noon. All in all in wasn't such a bad experience and I was able to drive Wendy home with no problems apart from the hold up at the Scilly Isles roundabout where there had been an accident between two cars and two lorries.
I had to be at the Royal Marsden, Sutton for 9.00am and we left home at 8.15 am arriving 5 minutes late to be greeted by the nursing staff who were going to fit a PICC line into a vein on my upper arm leading into a larger vein near my heart. The PICC line is a Peripherally Inserted Central Catheter which can be left in for at least one year and saves having to have a cannula fitted for each treatment, it also allows for bloods to be taken without needles, Yes!!
The whole procedure was done under local anaesthetic by a brilliant nurse, Lisa, who had explained everything clearly to me in advance and was very proud of the recently acquired online system that was able to plot the progress of a small magnet in the end of the line which allowed her to get the end of the PICC line in exactly the right place. This had to be confirmed by X-rays and signed off by the doctors before I left at around 12 noon. All in all in wasn't such a bad experience and I was able to drive Wendy home with no problems apart from the hold up at the Scilly Isles roundabout where there had been an accident between two cars and two lorries.
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