It is 8 days since we had the good news that my CT scan showed no recurrence or secondary spread of the cancer.I hadn't really made provisional plans for this eventuality; it seemed so unlikely. We hadn't even stocked up on bubbly, and had to stop at Tesco on the way home.
I have had some brilliant reactions from friends and family far and wide, and feel quite guilty that I seem to have taken it in my stride. In fact my reaction has been more like that of my oncology consultant, who came out into the waiting room to call us in, waved towards the two chairs, shook hands and asked me how I was before sitting down and saying in a very flat voice: 'Well, your CT scan was fine.'
We looked at each other in a sort of bewildered way, all our questions and comments rendered irrelevant by that simple statement. I managed to gather myself enough to ask for specifics about the liver, which has been enlarged for some time and seems to be getting bigger. He read me the appropriate part of the report, and then went on to talk about the side-effects of the chemo, past and continuing, even comparing it to the chemo used for breast cancer. What was all that about? He certainly didn't show any inclination to examine my liver, in fact I can't remember whether there was an examination couch in the room. It convinced me that oncology is not about patients' lives, but only about their life, in particular how long it can be extended.
Anyway, the good thing is that for the moment I am free of the cancer department, and returned to the care of the surgeon. That will undoubtedly mean follow-up colonoscopies, and probably removal of the polyps that I insist on making, but I don't dread that. I trust the surgeon, who has been very positive and honest about what he can do. I suppose this hands-on approach, that makes us partners in a venture that is expected to work out, suits my personality better than pouring poison into my circulation in the hope that it will kill more of the baddies than the goodies. It's about control. I don't like to think of myself as controlling, but my mother was, and my daughter admits that she is, so I guess I am coming round to it.
What happens next? My picture book launch is to be around the end of June, hopefully in our newly refurbished and redeveloped church building. I hope the printing process is going to plan. My brother Mick has been in France, and now we are in North Wales with Bob and Sheila, so I am not sure whether there are any hitches there. The novel, started as a project to give me something constructive to do during the chemotherapy, is as near finished as I can make it without input from others. As I am blogging, Sheila is in the lounge at Clogwyn reading my first entire printed copy. It isn't an exciting book: no adventure or crime detection or even major domestic occurences,so I suspect she may be found sleeping over my loose-leaf folder . I am making myself wonder whether it was actually worth writing; I would have given up months ago had it not been for my writing buddy Angela who has encouraged me every step of the way, and insisted that my genre is legitimate.
The weather is pretty awful, and has been for a couple of weeks now, here and in Norfolk. At home we have a hose-pipe ban which we are told will go on until December, but it is little problem at the moment because we have had no need to use the watering can on the garden. Presumably when Anglian water have finally filled the new reservoir in Essex with water from Norfolk's artesian wells they will allow us to have free access to our water. One doesn't want to be parochial and selfish, but we are the ones with the ban.
What I started out to say is that the weather is not important; we are enjoying time to sit round a late breakfast table and share news, read, watch 'a little bit of telly', (James's favourite bit of the day). No doubt Dave will want to walk on the beach once the tide has gone out, but it doesn't look inviting.
Time to find everyone else and check whether poor Sheila is looking glazed. Big plans for being alive? Not really, unless you count a tentative look forward to my 70th next year. Before that we have Mary-Ann's 40th, Megan's 18th, James starting school and perhaps a new novel to keep me occupied through November again.
Saturday, 21 April 2012
Sunday, 25 March 2012
Not fretting indeed!
WARNING: If you are feeling emotionally fragile, skip to 2)
1)Just re-read my last blog and can't believe I said I wasn't fretting about the CTscan. Since then both appointments have come through: the scan tomorrow and the appointment with my gloomy oncologist not until April 13th.It is coming home to me at last that however much I hated the chemo at least it was something that might work. The combination of feeling fairly sure that all is not well and the oncologist's assurance that he will not be offering me any more of this chemo (and that nothing else is available) is a bit debilitating. People keep saying to me, 'you look so well', the inference being that I cannot possibly have cancer, and they are right. I am going greyer, and wrinklier and I can't stand on one leg to put my socks on, but so what, I am getting old. I walk to the school and back, and garden most of the day when it is warm, and bake, and knit, and lead worship at church, as well as getting ready to publish my picture book and working on my novel, and I don't feel like someone who is dying. I don't suppose when I was working that I ever registered this period, sometimes quite long, when the cancer is there but not causing serious disruption. I am living on two levels. On one level living from day to day, enjoying life, making plans in the short term, planting stuff that won't flower for months. On the other hand I live with the awareness that nothing is for ever, that plans may not happen, that there will always be messy untied ends. All that is true for each of us, and it is not helpful to dwell on it, but having cancer makes the dichotomy between the two levels pertinent and painful. It also makes communication difficult, because when I am asked how I am, I appreciate the concern, and don't want to cause hurt or embarrassment, but nor can I say: 'you don't know what it is like'. I don't even want you to know what it is like, you wonderful people who care.
This is gloomier than my oncologist, and I don't even know whether I can post it. I am not in good shape today, and am only blogging because Joe said I was letting all my followers down. I had a horrendous bug 3 days ago and spent a night with my head over the loo. In the morning I took my temperature and it was well up, which was a great relief, but I still feel a bit low, so apologies to all those who have been reading me and getting the impression it is not so bad after all.
This morning's sermon was about the raising of Lazarus, and our minister made the point that when our dignified versions of the Bible talk about Jesus being troubled in spirit and deeply moved at the tomb, the Germans have a more apt translation of angry and distressed. It made me cry, but it helps to know Jesus was no more resigned to the horror of death than we are, but stands with us through it and brings us through it in his company.
Maybe the extent to which we cling to life is proportional to the loveliness of the life we have, and mine is lovely. And if it can be lovely in a world that is full of war and murder and deceit and hatred, how much lovelier in the new creation God promises us.
Mary-Ann and Dave have just found me in tears (over my own blog, oh dear!) and accepted my bad day and promised they won't let me get smelly and that if we can't afford the funeral there's always the sand-pit. How do people cope without family?
2) So what is news? Dave and I went to Norwich after church and bought a new car, a Kia Seconda which is big enough for all of us to go out for the day together. I can reach the pedals, and it has heated seats!
My picture book is all complete on my desk top publishing programme and just waiting for Mick to come and make it press-ready and take it away on his memory stick. I have an ISBN number and bar-code and I am quite impressed with it myself, maybe because so many people have taken pleasure in reminiscing. And little Joe likes it too, so maybe I can flog a few to the school. They do the Victorians on their syllabus, but I couldn't honestly produce any memories of the Victorians. Joe wanted to know if those days in my book were before or after the Victorians. Oh well!
Mary-Ann has plans to create an Italian al Fresco area outside the kitchen window, which is also outside our annexe lounge. She wants tubs of exotic looking climbers, a water feature and fairy lights in the crab-apple tree, as well as her pine table and presumably some chairs for those hot summer days we are looking forward to. Guess who the plans are for.
Dave has gone down the garden to sit in the sun. It was cool out there earlier in spite of blue sky, but I think I'll take my cup of tea and join him. I feel better for having unloaded - it helps to get things in perspective.
1)Just re-read my last blog and can't believe I said I wasn't fretting about the CTscan. Since then both appointments have come through: the scan tomorrow and the appointment with my gloomy oncologist not until April 13th.It is coming home to me at last that however much I hated the chemo at least it was something that might work. The combination of feeling fairly sure that all is not well and the oncologist's assurance that he will not be offering me any more of this chemo (and that nothing else is available) is a bit debilitating. People keep saying to me, 'you look so well', the inference being that I cannot possibly have cancer, and they are right. I am going greyer, and wrinklier and I can't stand on one leg to put my socks on, but so what, I am getting old. I walk to the school and back, and garden most of the day when it is warm, and bake, and knit, and lead worship at church, as well as getting ready to publish my picture book and working on my novel, and I don't feel like someone who is dying. I don't suppose when I was working that I ever registered this period, sometimes quite long, when the cancer is there but not causing serious disruption. I am living on two levels. On one level living from day to day, enjoying life, making plans in the short term, planting stuff that won't flower for months. On the other hand I live with the awareness that nothing is for ever, that plans may not happen, that there will always be messy untied ends. All that is true for each of us, and it is not helpful to dwell on it, but having cancer makes the dichotomy between the two levels pertinent and painful. It also makes communication difficult, because when I am asked how I am, I appreciate the concern, and don't want to cause hurt or embarrassment, but nor can I say: 'you don't know what it is like'. I don't even want you to know what it is like, you wonderful people who care.
This is gloomier than my oncologist, and I don't even know whether I can post it. I am not in good shape today, and am only blogging because Joe said I was letting all my followers down. I had a horrendous bug 3 days ago and spent a night with my head over the loo. In the morning I took my temperature and it was well up, which was a great relief, but I still feel a bit low, so apologies to all those who have been reading me and getting the impression it is not so bad after all.
This morning's sermon was about the raising of Lazarus, and our minister made the point that when our dignified versions of the Bible talk about Jesus being troubled in spirit and deeply moved at the tomb, the Germans have a more apt translation of angry and distressed. It made me cry, but it helps to know Jesus was no more resigned to the horror of death than we are, but stands with us through it and brings us through it in his company.
Maybe the extent to which we cling to life is proportional to the loveliness of the life we have, and mine is lovely. And if it can be lovely in a world that is full of war and murder and deceit and hatred, how much lovelier in the new creation God promises us.
Mary-Ann and Dave have just found me in tears (over my own blog, oh dear!) and accepted my bad day and promised they won't let me get smelly and that if we can't afford the funeral there's always the sand-pit. How do people cope without family?
2) So what is news? Dave and I went to Norwich after church and bought a new car, a Kia Seconda which is big enough for all of us to go out for the day together. I can reach the pedals, and it has heated seats!
My picture book is all complete on my desk top publishing programme and just waiting for Mick to come and make it press-ready and take it away on his memory stick. I have an ISBN number and bar-code and I am quite impressed with it myself, maybe because so many people have taken pleasure in reminiscing. And little Joe likes it too, so maybe I can flog a few to the school. They do the Victorians on their syllabus, but I couldn't honestly produce any memories of the Victorians. Joe wanted to know if those days in my book were before or after the Victorians. Oh well!
Mary-Ann has plans to create an Italian al Fresco area outside the kitchen window, which is also outside our annexe lounge. She wants tubs of exotic looking climbers, a water feature and fairy lights in the crab-apple tree, as well as her pine table and presumably some chairs for those hot summer days we are looking forward to. Guess who the plans are for.
Dave has gone down the garden to sit in the sun. It was cool out there earlier in spite of blue sky, but I think I'll take my cup of tea and join him. I feel better for having unloaded - it helps to get things in perspective.
Tuesday, 28 February 2012
Day 6, Last cycle, second course of chemo
Well, I am halfway through the last cycle of chemo, and it really will be the last as the oncologist says he won't give me any more because of the polyneuropathy . I still have some numbness and tingling of the feet from last year's course, and there is no certainty that the hands will ever go back to normal. My main occupations at the moment are crafts and using the computer, so my hands make a big difference to my quality of life.
I negotiated a small reduction in the chemo tablets for this last cycle, having felt so bad last time that I seriously considered missing the last dose. The symptoms have been a bit better, and this should be the worst day. Or perhaps it just seems better because it is the last time.
I have been working on my Grandma book, re-scanning the pictures and refining them a bit on the computer. The publisher suggested a sort of summary of what the book is about on the back cover, which is apparently where people look to see if they want to buy. The idea was to illustrate it in the same way as the inside pages, but it is so long since I painted them that I thought my style might well have changed, so I have spent the morning using my photo software to extract cameo images from my pages, hopefully as tempting clues. I have never managed to use this technology before so I am rather pleased with myself. It remains to be seen whether the final jpeg will have the definition required.
Once this is finalised Mick is going to come and set up the Pre-press on the pdf , print me a proof copy and take it from there. He is farming out the actual printing as I have designed the book as landscape A4, and his press is not big enough to take the required paper, but it is very reassuring to know that he can iron out the glitches for me before we spend a lot of money on printing. Dave is convinced that we will re-coup our investment. I am not so sure, but it is a lovely thing to be doing at this stage of my life, particularly as the book itself is basically about the early years of that life.
I am also knitting a blanket. That sounds really senile, but it is rather a special blanket. Think of it in the same way as the bead bracelets the young people are wearing to commemorate events and relationships. I call it my love blanket. I am using an Afghan style square based on a heart motif, with all kinds of variations, beads and tricky intarsia knitting, with stripes and squares as contrast. Then I am putting names on them with swiss darning, as a reminder and tribute for all the people who have loved and helped me through this difficult time. I am dying to get some of the squares sewn together, but have been held up by the request to knit slipper socks for the boys! The things grandmothers do!
The garden is a bit behind, but I am sure we will catch up once I get some strength back. I have potatoes chitting and yesterday the boys and I found some sweet pea seeds on last years dry plants, so we spread them on wet kitchen roll and are hoping they will sprout. I'd hate them to think new plants are manufactured at the garden centre. We then got carried away and started off some bean-sprouts and a margarine tub of cress, which Joe says should be ready to eat in 3 -5 days. He is such a mine of information.
I suppose my next event will be a CT scan, but I am not fretting about that because so far they have all been misleading. The only useful investigations I have had so far has been the colonoscopies, and while these have given me a diagnosis they haven't prevented me obstructing twice. Obviously family plans have been on hold for the best part of two years, and it is hard for those who are still hale and hearty, but all I can do is be thankful for each day that I can do something interesting, fun or meaningful. That's every day, so much to be grateful for.
I negotiated a small reduction in the chemo tablets for this last cycle, having felt so bad last time that I seriously considered missing the last dose. The symptoms have been a bit better, and this should be the worst day. Or perhaps it just seems better because it is the last time.
I have been working on my Grandma book, re-scanning the pictures and refining them a bit on the computer. The publisher suggested a sort of summary of what the book is about on the back cover, which is apparently where people look to see if they want to buy. The idea was to illustrate it in the same way as the inside pages, but it is so long since I painted them that I thought my style might well have changed, so I have spent the morning using my photo software to extract cameo images from my pages, hopefully as tempting clues. I have never managed to use this technology before so I am rather pleased with myself. It remains to be seen whether the final jpeg will have the definition required.
Once this is finalised Mick is going to come and set up the Pre-press on the pdf , print me a proof copy and take it from there. He is farming out the actual printing as I have designed the book as landscape A4, and his press is not big enough to take the required paper, but it is very reassuring to know that he can iron out the glitches for me before we spend a lot of money on printing. Dave is convinced that we will re-coup our investment. I am not so sure, but it is a lovely thing to be doing at this stage of my life, particularly as the book itself is basically about the early years of that life.
I am also knitting a blanket. That sounds really senile, but it is rather a special blanket. Think of it in the same way as the bead bracelets the young people are wearing to commemorate events and relationships. I call it my love blanket. I am using an Afghan style square based on a heart motif, with all kinds of variations, beads and tricky intarsia knitting, with stripes and squares as contrast. Then I am putting names on them with swiss darning, as a reminder and tribute for all the people who have loved and helped me through this difficult time. I am dying to get some of the squares sewn together, but have been held up by the request to knit slipper socks for the boys! The things grandmothers do!
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| Our little Victorian |
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| A few of my blanket squares |
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| Dom and Dave were given some pheasants |
Wednesday, 18 January 2012
I haven't blogged since the beginning of December, I am not sure why although some of the reason is connected with the novel-writing challenge I took up in November, which occupied all my computer time for a whole month and then some. It got to the stage where other members of the family felt neglected, and I lost the impetus to write anything at all. The novel is sitting here on my hard drive, four thousand words short of the 50000 target, and I am finding it hard to finish. This is probably the trouble with using your own experiences as the basis for a work of fiction: it can't finish because things keep happening.
So what has happened? Well, the other reason for losing the will to blog is living in this three-week cycle. I am not very good at this - every cycle I am convinced that I am having different symptoms, including a recurrence of the cancer, and in the last two cycles I haven't even had the reasonable week just before I go for the next intravenous, (tummy bug in December, bad cold in January needing antibiotics for my sinuses.) But this week I have been given a jolt, which has made me count my blessings and hope to stop being a miserable moaner. Here's the picture of what happened yesterday:
Dave took this picture before I got up this morning, by artificial light. The colours are a bit bleached out: the black eyes really are navy bue. James had gone to nursery, but Joe was more than happy to see me as an alien. His next dressing-up day is on the theme of 'lost in space'. I have already been recruited to make an alien's head-dress, but he thought if I turned up as part of the dressing-up day people might suspect I wasn't a child as I look old.
Everyone has been very kind and sympathetic but I have to say I am fully responsible for neglect of my body, and incredibly lucky that it wasn't worse. I braved the frost to take James for his injections, arrived in good time at the surgery, not our practice, and negotiated telephone consent for the jabs because I am not a legal guardian. James was good considering that he had a jab in each arm and only snivelled a bit in indignation as we walked down the road. At the end of the road we saw about 8 people waiting for our half-hourly bus into town, and as we had the library books with us we decided to proceed to town and treat ourselves to a coffee. The bus came slowly round the corner as we got to the junction, so we ran across the road and I was just saying to James that by the time all the people had got on we would be there, when I tripped and we both went our length on the pavement. James b ashed his knees and I took the full force on my face. It all happened in a split second. I suspect that my padded boots with good grip actually stopped me dead when I failed to pick up my feet properly. Maybe the moral is that 68 year old grandmothers in charge of a 3 year old shouldn't run for the bus.
I was dusted off and marched back to the Toftwood doctors by a very kind passer-by, and there I was cleaned up and assessed and told I needed stitches. Our friend Frances from church who was working there got her husband Richard to take us home as neither Dave's nor Dom's mobiles were giving them coverage, and after a cup of tea we set off for the N&N. Dave says his car knows the way by itself! Three hours later I emerged with stitches inside and outside my lower lip. The rest of the contusions are on the surface, ugly but not needing repair.
So the period of being fed up and bored with routine treatment is over. I hope I have learned my lesson. I have certainly learned to count my blessings:
1) I was wearing a heavy imitation sheepskin coat which cushioned my tummy.
2) I didn't break my ribs or fracture my skull
3) I didn't trip in front of the bus
4) The library books were unbloodied and everything else was washable
5) Richard who took me home was the one who had got hold of me on Sunday and prayed for me in church - God has a great sense of humour!
6) James was none the worse for wear once we had found and removed the lengths of micropore and cotton wool from his upper arms. (Before that he was apparently disabled by the injections, requiring Daddy to do the reaching out to put his food on his fork and bring his drink close to his hand. The words 'drama queen' came from Mary-Ann, but the effect of seeing the intact and uninflamed skin was miraculous.)
7) I am too ashamed and cross with myself to broadcast my accident, but everyone who knows has been so kind. I have had flowers and phone calls and so far no-one has refused to look at me, although I wouldn't blame them if they did.
8) Life has gone back into perspective; every day is unpredictable, the same for me as everyone else. I am living with cancer; so what? In the last week people have had a horrible traumatic experience on a captised liner, some have lost their lives while they thought they were going to enjoy themselves. A 23 year old Rugby player had to travel to the other side of the world to make arrangements for the funeral of his mother who had died on holiday, and while doing that he died. And a local high school girl died on a trampoline during a supervised lesson. What's a few bruises?
I could go on, but I need to get this blog posted after all the complaints I have had! It's different, anyway!
So what has happened? Well, the other reason for losing the will to blog is living in this three-week cycle. I am not very good at this - every cycle I am convinced that I am having different symptoms, including a recurrence of the cancer, and in the last two cycles I haven't even had the reasonable week just before I go for the next intravenous, (tummy bug in December, bad cold in January needing antibiotics for my sinuses.) But this week I have been given a jolt, which has made me count my blessings and hope to stop being a miserable moaner. Here's the picture of what happened yesterday:
Everyone has been very kind and sympathetic but I have to say I am fully responsible for neglect of my body, and incredibly lucky that it wasn't worse. I braved the frost to take James for his injections, arrived in good time at the surgery, not our practice, and negotiated telephone consent for the jabs because I am not a legal guardian. James was good considering that he had a jab in each arm and only snivelled a bit in indignation as we walked down the road. At the end of the road we saw about 8 people waiting for our half-hourly bus into town, and as we had the library books with us we decided to proceed to town and treat ourselves to a coffee. The bus came slowly round the corner as we got to the junction, so we ran across the road and I was just saying to James that by the time all the people had got on we would be there, when I tripped and we both went our length on the pavement. James b ashed his knees and I took the full force on my face. It all happened in a split second. I suspect that my padded boots with good grip actually stopped me dead when I failed to pick up my feet properly. Maybe the moral is that 68 year old grandmothers in charge of a 3 year old shouldn't run for the bus.
I was dusted off and marched back to the Toftwood doctors by a very kind passer-by, and there I was cleaned up and assessed and told I needed stitches. Our friend Frances from church who was working there got her husband Richard to take us home as neither Dave's nor Dom's mobiles were giving them coverage, and after a cup of tea we set off for the N&N. Dave says his car knows the way by itself! Three hours later I emerged with stitches inside and outside my lower lip. The rest of the contusions are on the surface, ugly but not needing repair.
So the period of being fed up and bored with routine treatment is over. I hope I have learned my lesson. I have certainly learned to count my blessings:
1) I was wearing a heavy imitation sheepskin coat which cushioned my tummy.
2) I didn't break my ribs or fracture my skull
3) I didn't trip in front of the bus
4) The library books were unbloodied and everything else was washable
5) Richard who took me home was the one who had got hold of me on Sunday and prayed for me in church - God has a great sense of humour!
6) James was none the worse for wear once we had found and removed the lengths of micropore and cotton wool from his upper arms. (Before that he was apparently disabled by the injections, requiring Daddy to do the reaching out to put his food on his fork and bring his drink close to his hand. The words 'drama queen' came from Mary-Ann, but the effect of seeing the intact and uninflamed skin was miraculous.)
7) I am too ashamed and cross with myself to broadcast my accident, but everyone who knows has been so kind. I have had flowers and phone calls and so far no-one has refused to look at me, although I wouldn't blame them if they did.
8) Life has gone back into perspective; every day is unpredictable, the same for me as everyone else. I am living with cancer; so what? In the last week people have had a horrible traumatic experience on a captised liner, some have lost their lives while they thought they were going to enjoy themselves. A 23 year old Rugby player had to travel to the other side of the world to make arrangements for the funeral of his mother who had died on holiday, and while doing that he died. And a local high school girl died on a trampoline during a supervised lesson. What's a few bruises?
I could go on, but I need to get this blog posted after all the complaints I have had! It's different, anyway!
Thursday, 1 December 2011
Chemo 2:4
It's December, and I am too late to upload my novel onto the NaNoWriMo site. I have 42732 words on my main novel document with about a thousand more in separate documents waiting to be incorporated, but have failed the 50000 target. Little Joe will be disappointed; he has been in most days to look at the graph the site provides, together with a projection of finishing date, words written today, and words required every day to make the target. It has been great fun, and by no means a waste of time. The Christian Writer contact agreed to be my writing buddy, and has driven over from Downham Market twice to meet and discuss, encourage and suggest. I have never shared anything I have written at this early stage before, and it has been a very positive experience. She achieved her 50000 so uploaded yesterday. I don't think the organisers read the work or do anything with it, it is mainly a supportive and encouragement site, with forums for moaning, getting over writers block, simply procrastinating and searching for information from the thousand of participants worldwide. Angela and I are going to meet again, maybe before Christmas for a celebration of what we have achieved, and certainly in January to do some editing and preparation for publication. She already has a novel with a publisher, is finding it frustratingly slow, but at least has some ideas about how to go about it. She may be able to get me some transport for the Christian Writers Group meetings as well, given that I don't have a car in the mornings and they tend to meet at lunch-time.
Well, apart from singing with the new Dereham Town Singers at the Turning on of Lights in the market place on Sunday, I have done little else this month. It hasn't been a good month chemo-wise, with every variety of bowel and stomach symptom. I have had 11 cycles in all, not counting yesterday's, and every time I go through a few days when I think 'this isn't working, I am going to obstruct, the chemo didn't really work last time so why should it work this time', and so forth. Why I don't learn from one session to the next I don't know.
Yesterday's intravenous has left me very tingly indeed. I worked on my novel from 4 .0 am until 6.45 this morning, the steroids keeping me awake. By the time I had made tea for us both and swept up the blackbird and feathers from the kitchen floor I had tingling up to my thighs and had to go back to bed with my little electric pad. It is definitely a day for warm jobs, and I thought I might get on with my Christmas cake, but found I had no cherries or peel that even remotely fell within the use-by category. It was much easier in the old days when we used them if they smelled all right. Anyway, Dave said it was time I updated my blog as Claire uses it to keep in touch, so there you are, Claire, this is for you. My keyboard gets nice and warm too, so it is a good thing for Day 1.
I saw my oncologist yesterday, and he is concerned that the tingling is persisting longer than it used to, and may persist for ever if I continue this dosage for the remaining 4 sessions, so he suggested I stick with this dose, already 20% lower than recommended because of the reactions last time, for number 4, and then reduce again. He gave me a confusing spiel about the value of the intravenous, having given me the choice of whether to have it last time. I said I had gone away with the impression that it would make little difference whether I had the intravenous or not, but he said it had been shown to make a 40% difference. I wasn't sharp enough to ask '40% of what?' after all his muttered calculations. If it's 40% of 6 months I have to ask myself it it is worth all the symptoms and disturbance to life-style, but actually the whole process is evolving so rapidly that the figures are out of date before they are published, and it is a brave person who would say 'no thanks' at this stage.
We are going to try to get our Christmas decs up this Friday. Usually we leave them until the weekend before Christmas, but with Joe and Sally coming this weekend because I can't make the annual trip to Stone for our pre-Christmas bash, and with the boys so full of excitement, we decided to make a full season of it this year. The first doors on the Advent calendars were opened this morning. Joe is all kitted out as a shepherd ready for the reception and Year 1 play. James has been invited to the Dinosaur park for a little mate's party (Hope the weather stays fine). Mrs Reeve's class were invited to take a favourite Christmas book to school to be read in class, and Joe took 'Father Christmas needs a wee'. It will be interesting to see if she uses that one.
Mary-Ann is on three days a week at present, and not getting the supply expected from her school to make up her 4 days. She likes the time at home, but not the drop in salary. She is cleaning upstairs this morning, so I think I'll get her down for a cup of something.
Well, apart from singing with the new Dereham Town Singers at the Turning on of Lights in the market place on Sunday, I have done little else this month. It hasn't been a good month chemo-wise, with every variety of bowel and stomach symptom. I have had 11 cycles in all, not counting yesterday's, and every time I go through a few days when I think 'this isn't working, I am going to obstruct, the chemo didn't really work last time so why should it work this time', and so forth. Why I don't learn from one session to the next I don't know.
Yesterday's intravenous has left me very tingly indeed. I worked on my novel from 4 .0 am until 6.45 this morning, the steroids keeping me awake. By the time I had made tea for us both and swept up the blackbird and feathers from the kitchen floor I had tingling up to my thighs and had to go back to bed with my little electric pad. It is definitely a day for warm jobs, and I thought I might get on with my Christmas cake, but found I had no cherries or peel that even remotely fell within the use-by category. It was much easier in the old days when we used them if they smelled all right. Anyway, Dave said it was time I updated my blog as Claire uses it to keep in touch, so there you are, Claire, this is for you. My keyboard gets nice and warm too, so it is a good thing for Day 1.
I saw my oncologist yesterday, and he is concerned that the tingling is persisting longer than it used to, and may persist for ever if I continue this dosage for the remaining 4 sessions, so he suggested I stick with this dose, already 20% lower than recommended because of the reactions last time, for number 4, and then reduce again. He gave me a confusing spiel about the value of the intravenous, having given me the choice of whether to have it last time. I said I had gone away with the impression that it would make little difference whether I had the intravenous or not, but he said it had been shown to make a 40% difference. I wasn't sharp enough to ask '40% of what?' after all his muttered calculations. If it's 40% of 6 months I have to ask myself it it is worth all the symptoms and disturbance to life-style, but actually the whole process is evolving so rapidly that the figures are out of date before they are published, and it is a brave person who would say 'no thanks' at this stage.
We are going to try to get our Christmas decs up this Friday. Usually we leave them until the weekend before Christmas, but with Joe and Sally coming this weekend because I can't make the annual trip to Stone for our pre-Christmas bash, and with the boys so full of excitement, we decided to make a full season of it this year. The first doors on the Advent calendars were opened this morning. Joe is all kitted out as a shepherd ready for the reception and Year 1 play. James has been invited to the Dinosaur park for a little mate's party (Hope the weather stays fine). Mrs Reeve's class were invited to take a favourite Christmas book to school to be read in class, and Joe took 'Father Christmas needs a wee'. It will be interesting to see if she uses that one.
Mary-Ann is on three days a week at present, and not getting the supply expected from her school to make up her 4 days. She likes the time at home, but not the drop in salary. She is cleaning upstairs this morning, so I think I'll get her down for a cup of something.
Tuesday, 8 November 2011
I can't believe it is a month since I blogged. Partly this has been due to finally sending my laptop in for repair of an unreliable mains lead. I rarely use the battery, in fact I don't think it is much good. HP used to send me all sorts of warnings about faulty batteries, but they were vague about who had got them and all the click here buttons to find out were useless. So I use mains and keep an eye on the charging button at the bottom of the screen and give the lead a wiggle if it goes off. Joe was fairly convinced it was the connection inside the laptop that was damaged (by me tripping over the lead all the time) but the repairers said it was the lead itself and also that there was a lot of dust and rubbish making the fan work overtime. It's true, the fan was on most of the time, and I think the failure to successfully burn DVDs all the way through was due to over-heating, so that part is better after their work, although the mains connection is still intermittent.
I hate to say it, but I felt disabled without my laptop. Sitting in Dave's office catching up with e-mails is not the same at all. The really frustrating thing was that I had an e-mail from someone I met on the Christian writing week, and she keeps me in touch with the local group even though I haven't been able to make the meetings. She mentioned that she was thinking of signing up for a project called National Novel Writing Month, which occurs every November. It involves signing up with the intention of producing a first draft of a 50,000 word novel in the 30 days of November. We both signed up, primarily for the discipline of writing every day. I am several thousand words behind schedule at present, with so much to do, mostly domestic trivia, but still important. If I had any intention of writing a best-seller I could justify treating it as a job, and disappearing into the annexe for 6 - 8 hours every day, but it isn't like that at all. I am incorporating recent experiences into a fictional novel, and because I am working in the first person even I can see that there are implications regarding the other characters and my relationships with them. Even so, it makes more sense to write about situations that I have first-hand experience of than having to do research on background that I know nothing about. My lead character is as fictional as I can make her. I have even made her experience of the chemo day-ward different from mine by letting her go on her own, and even make a relationship with a male patient. She is divorced, and her background bears no resemblance to mine in tems of events, and if Dave chooses to read any wishful thinking into that we have wasted 44 years.
Mary-Ann was there when I was trying to explain to Dot what I was doing, and her reaction to my lead character's situation was very negative, which tells me that quite enough of her life at the moment is centred on my cancer. That was discouraging, but then I thought she doesn't have to read it. I really am doing this for myself, as a challenge, and because I have always found it easiest to order my thoughts and understand where I am at when I write it down. I don't hold out much hope of acheiving the 50,000. I don't find complete drafts very easy, but keep going back read through and .make corrections.
Tomorrow is chemo 3, so today I have taken 60 steroid tablets and three piriton with some ranitidine to protect my stomach. After chemo day the routine is 4 steroid tablets a day for 3 days, and even that, with the second dose of 2 tablets at lunchtime, keeps me awake. This afternoon I slept for two hours and then didn't want to get up, under the influence of 2 piriton tablets, at breakfast and lunch. I had started to feel lively by tea-time, and recognised that this was the steroid kicking in rather later than the piriton, so we went off to cell-group reserving the final piriton until bed-time. Even I recognised that I was unusually talkative, enjoying the fact that my brain seemed to be making connections and producing the words in a way that has eluded me lately. I wonder how many much of what I said made sense to anyone else Dave was a bit fed up, because we didn't get away until 9.0. I was still buzzing when we got home, so I have cleaned my teeth, got into my nightie and dressing-gown, had a mug of camomile and settled with my lap-top until sleep intervenes.
Piriton is quite quick to act, so I am going to try to get a few words on my novel. If I am going to catch up by the mid-month I can see the weekend giving me typist's RSI. Anyway, here goes.
I hate to say it, but I felt disabled without my laptop. Sitting in Dave's office catching up with e-mails is not the same at all. The really frustrating thing was that I had an e-mail from someone I met on the Christian writing week, and she keeps me in touch with the local group even though I haven't been able to make the meetings. She mentioned that she was thinking of signing up for a project called National Novel Writing Month, which occurs every November. It involves signing up with the intention of producing a first draft of a 50,000 word novel in the 30 days of November. We both signed up, primarily for the discipline of writing every day. I am several thousand words behind schedule at present, with so much to do, mostly domestic trivia, but still important. If I had any intention of writing a best-seller I could justify treating it as a job, and disappearing into the annexe for 6 - 8 hours every day, but it isn't like that at all. I am incorporating recent experiences into a fictional novel, and because I am working in the first person even I can see that there are implications regarding the other characters and my relationships with them. Even so, it makes more sense to write about situations that I have first-hand experience of than having to do research on background that I know nothing about. My lead character is as fictional as I can make her. I have even made her experience of the chemo day-ward different from mine by letting her go on her own, and even make a relationship with a male patient. She is divorced, and her background bears no resemblance to mine in tems of events, and if Dave chooses to read any wishful thinking into that we have wasted 44 years.
Mary-Ann was there when I was trying to explain to Dot what I was doing, and her reaction to my lead character's situation was very negative, which tells me that quite enough of her life at the moment is centred on my cancer. That was discouraging, but then I thought she doesn't have to read it. I really am doing this for myself, as a challenge, and because I have always found it easiest to order my thoughts and understand where I am at when I write it down. I don't hold out much hope of acheiving the 50,000. I don't find complete drafts very easy, but keep going back read through and .make corrections.
Tomorrow is chemo 3, so today I have taken 60 steroid tablets and three piriton with some ranitidine to protect my stomach. After chemo day the routine is 4 steroid tablets a day for 3 days, and even that, with the second dose of 2 tablets at lunchtime, keeps me awake. This afternoon I slept for two hours and then didn't want to get up, under the influence of 2 piriton tablets, at breakfast and lunch. I had started to feel lively by tea-time, and recognised that this was the steroid kicking in rather later than the piriton, so we went off to cell-group reserving the final piriton until bed-time. Even I recognised that I was unusually talkative, enjoying the fact that my brain seemed to be making connections and producing the words in a way that has eluded me lately. I wonder how many much of what I said made sense to anyone else Dave was a bit fed up, because we didn't get away until 9.0. I was still buzzing when we got home, so I have cleaned my teeth, got into my nightie and dressing-gown, had a mug of camomile and settled with my lap-top until sleep intervenes.
Piriton is quite quick to act, so I am going to try to get a few words on my novel. If I am going to catch up by the mid-month I can see the weekend giving me typist's RSI. Anyway, here goes.
Monday, 10 October 2011
Gressenhall Rural Life
Went to Gressenhall with Mary, Dom and James this morning. The black sow had had piglets this morning! How about that for timing. James had his time in the play area and Mary and I did the nostalgia thing in all the furnished rooms and outhouses: 'yes, we had one of those.'
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