Just a quick note. I was having a drink of tea this evening and though it tasted okay. Not dramatic, but these things become important.
I think that the last few days I haven't noticed a bad taste from drinks. In particular the main one is toothpaste - hardly dramatic, but at least I don't feel a yucky taste with it anymore. At least the important drinks never had a problem - beer and wine.
Thursday, 30 July 2009
Monday, 27 July 2009
CT simulator
Had a great weekend round with Dom and Lynda. The boys always go a bit mad when they meet up with their cousins. Had a fun day on Saturday at Eureka in Halifax, they all enjoyed that. We also booked a short break to Italy next week, 6 days, it was the only chance we had before the start of radio. We got back very late last night and flaked out in bed.
Fortunately this morning I didn't need to get up early as I was back at the hospital again. In the shower this morning The Monkees were on the radio again: same as on operation day, is this a sign - complete circle? I suppose I still have a way to go, although I think of myself as being cured.
Today's hospital appointment was the CT simulator. This was down in the Oncology centre. I thought it was the same place as the CT scan I had 2 weeks ago, but it was downstairs. I discovered a whole new part of the hospital, there's a whole lot down there, mainly radiotherapy I suppose.
I had a bit of a wait, but not long. Then I was called in, one of those rooms with the big doughnut machines in the middle and a control room behind a glass screen. But I think this machine is just for simulation, setting up for radiotherapy. There were 3 radiographers in there, they were wondering how to target my armpit, seems to be a difficult place to hit. I didn't establish if this is a bit of an unusual one for them. They had me lie on the moving bed on top of a plastic tube which would form into the shape of my back to keep me in the same position. They pushed and nudged me to get into just the right position. They then made some pen marks on me to allow them to get things lined up accurately. The pen marks were filled in with an injection to make it permanent - basically it's a tattoo. I've been poked by lots of needles in the last 4 months, but I think this was the most painful. I then had to lie still for a few minutes while the bed slid in and out of the doughnut with some lasers shining at me to line things up.
At the end they seemed to indicate that they will target quite a large area around my armpit. So, after all the careful millimetric lining up get a 13 mm target they will probably shoot at about 10cm. Hardly the same as lining up a silicon wafer to make nanometre silicon chips.
I had a discussion with the radiographers at the end to find out how things will progress and what effect I should expect it to have. A lot of soreness it seems and probably tiredness which could be progressive as the treatment goes on. I suppose it hit me a bit that radio might be quite hard. I was thinking I was now cured and the radio would be a bit of a breeze compared to chemo, but it might be quite hard. It really is a new stage and I've still got a bit of the journey to complete yet. I only had 6 treatment days for chemo, but I'll have 15 for radio over a shorter timescale.
Fortunately this morning I didn't need to get up early as I was back at the hospital again. In the shower this morning The Monkees were on the radio again: same as on operation day, is this a sign - complete circle? I suppose I still have a way to go, although I think of myself as being cured.
Today's hospital appointment was the CT simulator. This was down in the Oncology centre. I thought it was the same place as the CT scan I had 2 weeks ago, but it was downstairs. I discovered a whole new part of the hospital, there's a whole lot down there, mainly radiotherapy I suppose.
I had a bit of a wait, but not long. Then I was called in, one of those rooms with the big doughnut machines in the middle and a control room behind a glass screen. But I think this machine is just for simulation, setting up for radiotherapy. There were 3 radiographers in there, they were wondering how to target my armpit, seems to be a difficult place to hit. I didn't establish if this is a bit of an unusual one for them. They had me lie on the moving bed on top of a plastic tube which would form into the shape of my back to keep me in the same position. They pushed and nudged me to get into just the right position. They then made some pen marks on me to allow them to get things lined up accurately. The pen marks were filled in with an injection to make it permanent - basically it's a tattoo. I've been poked by lots of needles in the last 4 months, but I think this was the most painful. I then had to lie still for a few minutes while the bed slid in and out of the doughnut with some lasers shining at me to line things up.
At the end they seemed to indicate that they will target quite a large area around my armpit. So, after all the careful millimetric lining up get a 13 mm target they will probably shoot at about 10cm. Hardly the same as lining up a silicon wafer to make nanometre silicon chips.
I had a discussion with the radiographers at the end to find out how things will progress and what effect I should expect it to have. A lot of soreness it seems and probably tiredness which could be progressive as the treatment goes on. I suppose it hit me a bit that radio might be quite hard. I was thinking I was now cured and the radio would be a bit of a breeze compared to chemo, but it might be quite hard. It really is a new stage and I've still got a bit of the journey to complete yet. I only had 6 treatment days for chemo, but I'll have 15 for radio over a shorter timescale.
Friday, 24 July 2009
Seventh Chemo session / Scan results
Today I get to find out the scan results. I might have more chemo today, it could be all over.
No chance to take the boys to school - end of term this week. So we just dropped them off at friends before we went to hospital. I went in with Sam.
Weigh in today was 79.1kg - a bit of a jump, I'll have to keep an eye on my weight after this ends. We were hanging around for an hour before we got to see the doctor. Sam was mainly keeping an eye on progress of files between the offices. Must have been swapping out the awkward cases. She was mainly concerned that I did get to see Dr Davies. She thought my file did end up with another doctor, but Dr Davies recovered it just before we were called in to see him.
So, first up, we got the scan result. My tumor was given as grade 1 (on a scale of 5). Basically they could see no sign of activity in it. The lymph node was measured at 13mm, only slightly larger than a normal size which should be 11mm. They also confirmed that there were no other tumor sites found - I suppose it would be a bit unlikely that they would develop during chemo. I am now classified as in remission. So there is no more chemo which I don't think I'll miss. But I have been randomly selected to have the radiotherapy as part of the trial. We discussed a bit about this, Dr Davies did suggest that I could stop treatment now, but I would not be part of the trial and not have the extra scans as part of that. I'm probably a but disappointed as I hoped not to do the radio. But I did sign up for it and commit myself so I'm going through with it. At least at has meant that I miss a cycle of chemo. He did say that the radio will make sure that any lingering disease cells are killed off for sure.
We discussed a bit about swine flu. He recommended that I (and Sam) should get the vaccine when it is available, my immune system is still going to take some time to recover. I should get priority. I still have a prescription for antibiotics for the next 3 months.
We left after seeing the doctor. Picked up the boys and then off to Dom & Lynda's for the weekend.
Next step is on Monday, back at the hospital to have a CT simulator. I think this is just to measure me up for the radio, not sure exactly what will happen, but it's not quite the same as a proper CT scan. I will update on Monday. After that my radio treatment is virtually every day from 10th August to 1st September.
No chance to take the boys to school - end of term this week. So we just dropped them off at friends before we went to hospital. I went in with Sam.
Weigh in today was 79.1kg - a bit of a jump, I'll have to keep an eye on my weight after this ends. We were hanging around for an hour before we got to see the doctor. Sam was mainly keeping an eye on progress of files between the offices. Must have been swapping out the awkward cases. She was mainly concerned that I did get to see Dr Davies. She thought my file did end up with another doctor, but Dr Davies recovered it just before we were called in to see him.
So, first up, we got the scan result. My tumor was given as grade 1 (on a scale of 5). Basically they could see no sign of activity in it. The lymph node was measured at 13mm, only slightly larger than a normal size which should be 11mm. They also confirmed that there were no other tumor sites found - I suppose it would be a bit unlikely that they would develop during chemo. I am now classified as in remission. So there is no more chemo which I don't think I'll miss. But I have been randomly selected to have the radiotherapy as part of the trial. We discussed a bit about this, Dr Davies did suggest that I could stop treatment now, but I would not be part of the trial and not have the extra scans as part of that. I'm probably a but disappointed as I hoped not to do the radio. But I did sign up for it and commit myself so I'm going through with it. At least at has meant that I miss a cycle of chemo. He did say that the radio will make sure that any lingering disease cells are killed off for sure.
We discussed a bit about swine flu. He recommended that I (and Sam) should get the vaccine when it is available, my immune system is still going to take some time to recover. I should get priority. I still have a prescription for antibiotics for the next 3 months.
We left after seeing the doctor. Picked up the boys and then off to Dom & Lynda's for the weekend.
Next step is on Monday, back at the hospital to have a CT simulator. I think this is just to measure me up for the radio, not sure exactly what will happen, but it's not quite the same as a proper CT scan. I will update on Monday. After that my radio treatment is virtually every day from 10th August to 1st September.
Monday, 20 July 2009
PET scan at St Thomas
This weekend was our third in a row with visitors. This time it was Louise, Luca & Victoria from Switzerland. We hadn't seen them for 4 years, so there was quite a lot of catching up. We had a great lunch in the New Forest followed by a good long walk on Sunday. They all went off on Monday morning for a cruise on the Queen Victoria. For me, it's Monday, which is now a scan day. This time for a PET scan at St Thomas's in London. Here's some info about PET scans PET-CT scan: Cancer Research UK: CancerHelp UK .
I went off about 11 and I was there about 1. The PET centre is right in the bowels of the hospital, in amongst the kitchens and laundry. I was a bit early but they saw me straight away. They checked my height and weight. I got sat in a chair and they put a cannula in my arm while they asked me some questions (usual health stuff - I know the answers now). I then had to lie down while they put some of the radioactive stuff in my arm, didn’t seem very much and they took the cannula out straight away, so no pumping stuff in my arm during the scan. Then I had to lie down and relax for an hour and half, presumably to let it all spread evenly round the body. I wasn't allowed to read, but I could listen to some music. After that I put on a gown and went to the room with the machine. Like the CT machine it was a moving bed going into a tunnel. I went into the tunnel, then it just moved a bit and stopped for a few minutes. It repeated that quite a few times until I reached the other end. The whole thing took about 30 minutes. I was then free to leave, I was out before 4.00.
Afterwards I went round to meet up with Kathryn who’s working in London just across the river from the hospital. We went out to have a drink at a pub nearby, then we went to eat at Pizza Express. I was quite hungry as I hadn’t eaten since breakfast (couldn't eat before the scan). We hadn’t had a chance to spend some time together before, it was good just the two of us. We walked back to Waterloo together, Kathryn took the tube back home. I had to wait for the next train, but I was still home for 10:00.
I went off about 11 and I was there about 1. The PET centre is right in the bowels of the hospital, in amongst the kitchens and laundry. I was a bit early but they saw me straight away. They checked my height and weight. I got sat in a chair and they put a cannula in my arm while they asked me some questions (usual health stuff - I know the answers now). I then had to lie down while they put some of the radioactive stuff in my arm, didn’t seem very much and they took the cannula out straight away, so no pumping stuff in my arm during the scan. Then I had to lie down and relax for an hour and half, presumably to let it all spread evenly round the body. I wasn't allowed to read, but I could listen to some music. After that I put on a gown and went to the room with the machine. Like the CT machine it was a moving bed going into a tunnel. I went into the tunnel, then it just moved a bit and stopped for a few minutes. It repeated that quite a few times until I reached the other end. The whole thing took about 30 minutes. I was then free to leave, I was out before 4.00.
Afterwards I went round to meet up with Kathryn who’s working in London just across the river from the hospital. We went out to have a drink at a pub nearby, then we went to eat at Pizza Express. I was quite hungry as I hadn’t eaten since breakfast (couldn't eat before the scan). We hadn’t had a chance to spend some time together before, it was good just the two of us. We walked back to Waterloo together, Kathryn took the tube back home. I had to wait for the next train, but I was still home for 10:00.
Saturday, 18 July 2009
Still overdoing things
Well the MK reunion was a great night out. Excellent turn-out from all the old friends. It was good to see that everybody is quite settled into new jobs again. Unfortunately Mark got the whisky flowing again back at his place and we carried on too late. Then got up early on Friday to get back to work. Lunchtime was Steve J's leaving drink at the pub. Not surprisingly I flaked out by the evening. Perhaps the tiredness is not due to the treatment?
Still, I slept very well last night and feel great today. I have still got sore arms, with the feeling of sunburn. It seems to come in the occasional wave, not massively painful, but definitely uncomfortable.
More visitors this weekend - Louise, Luca & Victoria from Switzerland. Maybe not quite so manic as last weekend I hope. At least Monday I'm not working as I have my PET scan in London.
Still, I slept very well last night and feel great today. I have still got sore arms, with the feeling of sunburn. It seems to come in the occasional wave, not massively painful, but definitely uncomfortable.
More visitors this weekend - Louise, Luca & Victoria from Switzerland. Maybe not quite so manic as last weekend I hope. At least Monday I'm not working as I have my PET scan in London.
Wednesday, 15 July 2009
Tired today
I'm feeling quite tired this evening. This could be a cumulative effect of the weekend and also a late night last night when Paul W came round for dinner. Not seen him for ages, we had a great evening catching up on what's been going on and recalling old times.
Otherwise I do have aching arms today. This is a bit different to before, it's more a feeling of aching muscles than the aching bones that I've had before. My skin feels a bit sensitive - like sunburn and my skin feels poked and prodded with holes. I seem to have some hard skin on the edges of my fingers, that might be a chemo side effect, I'm not sure. I should also say that I still have some tingling and twinges in my armpit. I hope all this clears up in the end, I wonder what I'll be left with afterwards.
Hope I've recovered tomorrow. It's reunion night in MK and I'm staying away overnight. Hope I can cope.
Otherwise I do have aching arms today. This is a bit different to before, it's more a feeling of aching muscles than the aching bones that I've had before. My skin feels a bit sensitive - like sunburn and my skin feels poked and prodded with holes. I seem to have some hard skin on the edges of my fingers, that might be a chemo side effect, I'm not sure. I should also say that I still have some tingling and twinges in my armpit. I hope all this clears up in the end, I wonder what I'll be left with afterwards.
Hope I've recovered tomorrow. It's reunion night in MK and I'm staying away overnight. Hope I can cope.
Monday, 13 July 2009
CT Scan today
Another CT scan today. This time at SGH. But it was similar to my first one at the Nuffield.
I was in early at 8:00am. Had a contrast drink for and hour. Then I was in. They put a cannula in my arm, but no need for a gown, I just went in in my clothes. Then I lay down on the bed, they wired up the drip. I went in and out of the machine a few times then they pumped some more stuff into my arm. I had the metallic taste and warm feeling again. A few more in and out and I was done. All over in about half an hour.
This time it's linked to the PET scan I'm going to have next week for the trial. As I said on Friday, this could be the end, but let's just say it's a new stage before I find out a week on Friday. I also ran out of some drugs today, I have used up all my anti-sickness and steroid pills, maybe for good? I still have my antibiotics for the next 2 weeks. I still have tingling in my armpit (probably said that before - is it good or bad?). I feel I have to go with the flow on this depending on what results I get next week, if it's more treatment at least I'll know I need it.
I seem to have quite a few aches and pains in my arms. These seem to be bruises around where are the needles have gone in. This is not the usual Vinblastine burn, that's usually later. Not feeling tired (Sam is though - probably the weekend).
I was in early at 8:00am. Had a contrast drink for and hour. Then I was in. They put a cannula in my arm, but no need for a gown, I just went in in my clothes. Then I lay down on the bed, they wired up the drip. I went in and out of the machine a few times then they pumped some more stuff into my arm. I had the metallic taste and warm feeling again. A few more in and out and I was done. All over in about half an hour.
This time it's linked to the PET scan I'm going to have next week for the trial. As I said on Friday, this could be the end, but let's just say it's a new stage before I find out a week on Friday. I also ran out of some drugs today, I have used up all my anti-sickness and steroid pills, maybe for good? I still have my antibiotics for the next 2 weeks. I still have tingling in my armpit (probably said that before - is it good or bad?). I feel I have to go with the flow on this depending on what results I get next week, if it's more treatment at least I'll know I need it.
I seem to have quite a few aches and pains in my arms. These seem to be bruises around where are the needles have gone in. This is not the usual Vinblastine burn, that's usually later. Not feeling tired (Sam is though - probably the weekend).
Sunday, 12 July 2009
NCT BBQ weekend
Following on from Friday. I don't seem to have any more tingling in my feet or any nausea. My nose seems to have warmed up as well.
We had a full crowd of the NCT group for the weekend. Not good weather for the BBQ, but we went ahead anyway in the rain. Although it was just me (supported by the dads - thanks guys) outside cooking. Women and children all inside. So I survived another BBQ without side effects.
Alcohol units were of course high. Funny how, early on in the treatment, I hardly had anything, especially the day after chemo. Now, it's just another day. I think there was a bit of chat about my disease and treatment, but it was not dominant. I think everybody was quite relaxed about my condition, especially since we met a few weeks ago. That suits me fine really.
Amazingly we piled all the children in the playroom (plus Lisa in the end). They all went to bed late - we went even later of course. Then they all woke up too early - poor Lisa.
We had a full crowd of the NCT group for the weekend. Not good weather for the BBQ, but we went ahead anyway in the rain. Although it was just me (supported by the dads - thanks guys) outside cooking. Women and children all inside. So I survived another BBQ without side effects.
Alcohol units were of course high. Funny how, early on in the treatment, I hardly had anything, especially the day after chemo. Now, it's just another day. I think there was a bit of chat about my disease and treatment, but it was not dominant. I think everybody was quite relaxed about my condition, especially since we met a few weeks ago. That suits me fine really.
Amazingly we piled all the children in the playroom (plus Lisa in the end). They all went to bed late - we went even later of course. Then they all woke up too early - poor Lisa.
Sunday we all headed back to the beach at West Wittering. Fortunately it was much better weather then Saturday. They all had great fun building castles on the beach and splashing in and out of the water.
Friday, 10 July 2009
Sixth Chemo session
Black bins today (and brown ones too - baaah).
Appointment today was for 10:00am, so I didn't have much time after I dropped the boys off at school. Went with Sam this time.
Weigh-in first: 77.9kg. That's about 1.7kg up from the start, I need to keep an eye on that, but I suppose now is not the time to get too worried about it. First off we got called in for a chat with Mairead. Normally she has just caught up with a chat in the waiting room, this time we sat down in a consulting room. She wanted to talk about how Sam and I were feeling. We spoke a bit about what happens next with the scans. We made the request that next time round we should talk to Dr Davies, as we'd seen different doctors the last 3 times, I should get the scan results at that appointment.
We waited a few minutes then got called in to see - Dr Davies, wow first time in 8 weeks! It seemed easier talking to him than a different doctor who I hadn't seen before. I still had to update him with what's happened since. I also mentioned the numb feet, he was quite interested, it's probably the Vinblastine, but he doesn't want to change the dose at this stage. I said it wasn't too severe and I could handle it, we'll see what happens from now on. I also mentioned having a cold nose for the last few days, he laughed, I suppose you can't blame everything on the treatment. Afterwards I sorted out the next appointment, noted that it should be with Dr Davies, plus some provisional chemo sessions.
Back home for lunch and shopping for tomorrow's BBQ with the NCT group. Then I went back to hospital for my chemo at 2:30. They were running late again today, I got in at 3:15. This time it was Carol who set me up to start with, but then Sally took over. But I did get a reaction from the Vinblastine as I did before: Fourth Chemo Session. This was just a blanching and my arm was quite cold, but not painful or uncomfortable. We waited for a while, but it didn't really warm up, so in the end I had another cannula put in the other arm. After that the other drugs went in quite safely, my left arm warmed up.
It's strange, but this could be my last chemo session. I'm trying not to build it up at the moment - I don't want to get too excited about it and then be disappointed.
This evening I think I have a bit of tingling in my feet - similar sign to the numbness. I also have a vague feeling of nausea this evening. I hope these are not signs of more serious reaction this time. I have to cope with 17 in the house tomorrow for the BBQ. I should also note that Tim appears to have recovered from his "Swine Flu" and is now off in France.
Appointment today was for 10:00am, so I didn't have much time after I dropped the boys off at school. Went with Sam this time.
Weigh-in first: 77.9kg. That's about 1.7kg up from the start, I need to keep an eye on that, but I suppose now is not the time to get too worried about it. First off we got called in for a chat with Mairead. Normally she has just caught up with a chat in the waiting room, this time we sat down in a consulting room. She wanted to talk about how Sam and I were feeling. We spoke a bit about what happens next with the scans. We made the request that next time round we should talk to Dr Davies, as we'd seen different doctors the last 3 times, I should get the scan results at that appointment.
We waited a few minutes then got called in to see - Dr Davies, wow first time in 8 weeks! It seemed easier talking to him than a different doctor who I hadn't seen before. I still had to update him with what's happened since. I also mentioned the numb feet, he was quite interested, it's probably the Vinblastine, but he doesn't want to change the dose at this stage. I said it wasn't too severe and I could handle it, we'll see what happens from now on. I also mentioned having a cold nose for the last few days, he laughed, I suppose you can't blame everything on the treatment. Afterwards I sorted out the next appointment, noted that it should be with Dr Davies, plus some provisional chemo sessions.
Back home for lunch and shopping for tomorrow's BBQ with the NCT group. Then I went back to hospital for my chemo at 2:30. They were running late again today, I got in at 3:15. This time it was Carol who set me up to start with, but then Sally took over. But I did get a reaction from the Vinblastine as I did before: Fourth Chemo Session. This was just a blanching and my arm was quite cold, but not painful or uncomfortable. We waited for a while, but it didn't really warm up, so in the end I had another cannula put in the other arm. After that the other drugs went in quite safely, my left arm warmed up.
It's strange, but this could be my last chemo session. I'm trying not to build it up at the moment - I don't want to get too excited about it and then be disappointed.
This evening I think I have a bit of tingling in my feet - similar sign to the numbness. I also have a vague feeling of nausea this evening. I hope these are not signs of more serious reaction this time. I have to cope with 17 in the house tomorrow for the BBQ. I should also note that Tim appears to have recovered from his "Swine Flu" and is now off in France.
Wednesday, 8 July 2009
New job for Sam
One thing that's happened in the last few days is that Sam had actually got a job (or a paid one anyway). She's starting as a teaching assistant from September. So I now have to get well again by then as I won't have a carer anymore.
I decided to go in to hospital today for my blood test instead of Thursday. I thought it might be a bit quieter since Thursdays have lots of people getting tests at the Warfarin clinic. It didn't turn out any better, I was still waiting about 40 minutes.
We were expecting Katy and Tim down to stay tomorrow night. But we had a call this evening to cancel. Seems that Tim has gone down with flu-like symptoms - could be the dreaded Swine flu! I suppose we don't want it in any case regardless of my condition. Hope you're well again soon Tim and still make it to France.
Tuesday, 7 July 2009
Annoying letter from the Council
A lot of comments from my readers have shown that you all like my green bin/black bin description of treatment weeks. Some of you will also be aware of the new phase my treatment that is about to begin - over the next few weeks I will be having scans on a Monday. Monday is the collection day for food waste here from the brown bins. I was, therefore, getting ready to announce the brown bin day.
But to my horror we have received a letter from the council saying that, as from this week, brown bins will be collected on Fridays. Do these people have no idea what confusion this will cause? I'm not sure how I'm going to remember my scan dates.
Feeling good today. Just knackered a bit from swimming this evening.
Monday, 6 July 2009
Grandparents weekend
Well the grandparents all turned up. They were all well behaved, no fighting over the boys. The main problem was that the unit consumption increased to serious levels. There was a bit of a discussion about my condition, but generally I think they're all quite relaxed about how I'm doing. We managed to get out to the seaside at West Wittering on Saturday, hot day, but I didn't burn, followed by BBQ at home (well cooked, but wine was drunk). Then Sunday lunch in the New Forest, more units.
I bumped into Paul Williams at work today (ex-colleague from NEC). Just met in the kitchen at work, he's working here for 4 weeks. Of course he made a comment about my lack of hair. I just came out with me having chemo. Funny how this just tripped off the tongue, no problem. I haven't really had to explain to anybody for quite a while. The last time I did must have been during the early part of treatment when I didn't really know what was happening or going to happen. But doing it now is a lot different, I know what's happening and how I'm coping. I think Paul was a little bit shocked though.
I'm probably feeling pretty good at the moment. I haven't had too much of an ache in my arms, I can feel it but it is very tolerable. I'm still getting the odd tingle and twinge in my armpit. Not sure if that's good or bad. Treatment still working? Or why do I still need it?
Thursday, 2 July 2009
It ain't half hot mum
I suppose I left my last post on a cliffhanger. Well we did go to Legoloand on Monday. It was a great day out. We managed to get on lots of rides. It was a bit busy, but the queues were not too bad, some rides had none. I don't think it was a real trial for my condition. The main problem was the heat and the sun. I did keep out of the sun, except that I did loose my cap on the log flume.
Since then I have been feeling fine generally. I had a little hint of the ache in my arms and took some ibuprofen. A little bit of indegestion, but nothing serious. Sleep has been fine, even in the hot weather.
I had a emal today from the wave105 PR company. They sent me a copy of an article in the Portsmouth news, also a link to another website. Here they are:
Big danger day tomorrow, though, full set of grandparents to stay for the weekend. I hope they take care of me.
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