Friday, 30 October 2009
Visiting - -
17-30: I used to live here - it seems a long time ago and a long way away - - as does the rough North Sea. It has no relevance to this post - - .
There have been some improvements to my quality of life lately, indeed I sound quite cheerful in many of my posts - partly because I am quite cheerful to be still around. However - I am not 'cured' and no-one can really know how long I have and what my quality of life will be. I am now going walks (albeit quite short and gentle ones), playing with boats and using my bike to get around. I am not as energetic as the blog suggests - and the valley of the shadow of death has not gone - it is rather that I am able to get to the sunny uplands. So it is a bit of a mixture - especially after chemo-therapy - the killer chemicals knock out general well-being as well as the cancer cells - (a price worth paying by the way).
My usual survival strategies still apply - I need a lot of solitary time - time alone. I do not want the responsibility of visitors - I do not have the emotional or physical energy. I have agonised about writing this - I felt that I 'ought' to have visitors because they want to come - but I am going to follow my instincts and do solitude. I don't know how long this will last - we will see.
But - keep in touch by writing emails and letters - full of what someone called 'drivel' and what I call 'the trivia of every day life' (which I believe has great importance to the texture of life) - that way I keep in touch with you. I cannot say how much I appreciate emails and letters - they have kept me going and contributed hugely to my well-being - more than I can find words to say - except they keep me on the sunny uplands.
Thursday, 29 October 2009
bonfire of the vanities
18-10: Three of my books - and some basic notes that were used to write them.
A card index of potteries in England, 1660 to 1815 for my PhD. Sheets of notes extracted from probate inventories used in my research (and book) on consumer behaviour from 1660 to 1760.
I worked with paper - but have 'put them on a database' since - quite small databases actually.
I am going to make a metaphorical (ie not a real bonfire) bonfire of the papers - as I do not expect to look at them again (I have not done so in the last 15 years!). Part of clearing out my possessions.
A card index of potteries in England, 1660 to 1815 for my PhD. Sheets of notes extracted from probate inventories used in my research (and book) on consumer behaviour from 1660 to 1760.
I worked with paper - but have 'put them on a database' since - quite small databases actually.
I am going to make a metaphorical (ie not a real bonfire) bonfire of the papers - as I do not expect to look at them again (I have not done so in the last 15 years!). Part of clearing out my possessions.
Wednesday, 28 October 2009
Up to Town - and internet connections
12-20: Yesterday - I got on a through train to Liverpool Street to have lunch with my daughter - and to pick up some gear for the boats. I walk slightly faster than the other people in Woodbridge - in London - I crawl. It was all rather mind-blowing and wonderful - the bustle an exciting contrast to my normal life.
Today - a further battle with T-Mobile to get a sensible connection - unsuccessful - makes me very bad tempered. So I maybe off line for a while - or until I come into the library (where I am now) to connect and blog.
It has at least identified the one thing that will throw me over the edge - lack of internet connectivity. And it is my own fault for not getting on with a broadband line - much gnashing of teeth and groaning.
Today - a further battle with T-Mobile to get a sensible connection - unsuccessful - makes me very bad tempered. So I maybe off line for a while - or until I come into the library (where I am now) to connect and blog.
It has at least identified the one thing that will throw me over the edge - lack of internet connectivity. And it is my own fault for not getting on with a broadband line - much gnashing of teeth and groaning.
Sunday, 25 October 2009
Messing about with boats
21-00 GMT: A whole extra hour to mess in boats.
I have had a happy weekend playing with boats. The picture shows that I now have the use of a Laser here (the one with the grey cover). There is also a red Laser. I have washed the sails in the bath and the foils in the kitchen sink - what pleasure! The pic also shows my bike and all the stuff I carried back on it (I did have to walk) by way of lunch of sausage and chips in bright sunshine. I am surprised, but also pleased, to find happiness here - under the circumstances.
Thursday, 22 October 2009
wind over tide - giving waves
20-00: The picture is the channel out of the Deben - with the wind blowing over the fallinig tide. I would like to think that this is a metaphor for parts of life - maybe the rough patches - - which you sail through to calmer water - -.
There are two sides to life here which are closely interwoven. On the one side, I have cancer - I am concerned about living with it and the treatments as best I can. On the other side - I am enjoying myself with simple pleasures; sitting on a boat, walking along beaches, eating chips, watching boats.
Usually I do one at the time - - today I did both.
I went into Ipswich hospital to see whether I should continue with chemotherapy tomorrow. I discuss treatment options with the consultant and try to visualise (with his help) what is going on the the lungs. Necessary - I previously thought that a shadow to the left of the lung was a tumor - yo folks - it is the heart! But it does seem as if the spots representing the nodes of cancer have become smaller and fewer. The conclusion is to carry on with the same chemotherapy for the time being to zap em even more.
I felt - after this - I needed to walk along the beach - so came back by way of Felixstow Ferry - and watched the waves and surf caused by wind over tide and the offshore gravel banks. As well as the kite surfers exploiting the waves and one (in my view) foolish yacht who went out through the surf.
Wednesday, 21 October 2009
Head of navigation - the Deben
11-30: On Tuesday I got the train to Melton and walked back along the river Deben from the head of navigation. Not a very long walk but longer than I am used to recently - and I walked slightly faster without getting too out of breath. The tide was high - the mud was completely out of sight so the picture looks especially idyllic. Normally there is but a trickle of water under the bridge.
Today - heavy rain so am lurking indoors worrying about a lot of domestic trivia.
Monday, 19 October 2009
another beach - and (sea) cabbages
18-10: Felixstowe Ferry - looking northwards - with Walton in the distance. The plants are cabbages amongst the gravel - very strange and interesting.
Went to see Felixstowe (not so nice) and Felixstowe Ferry (very nice) today as part of the plan to make a few expeditions here and there. FF is at the mouth of the Deben - so I looked at the fearsome entrance to the river - with tide over wind and surf over gravel banks. I walked along the sea walls in spitting rain and chilly SE wind - which gave me an excuse to eat chips etc in a cafe. I have got very used to walking slowly - so I am trying to speed up a bit - not too much! Lovely to see the sea again - and walk in rain. Very good for morale and I felt a long way from annoying practical worries, as well as from the Valley.
Dear friends - thank you for reading my blog - it really helps me to know you are out there.
Sunday, 18 October 2009
chemotherapy
19-50: On Friday I went to Ipswich Hospital both to see the consultant and to start the third lot of chemotherapy. It did not turn out quite as expected - and paradoxically I am finding this quite hard to write about.
The latest Xray - when compared to the previous one - shows a smaller patch of cancer. Good stuff and (I think) rather unexpected. Is this the good and healthy life I am leading - or is it the chemicals - I suspect both but I am quite happy to give the chemicals due credit.
The latest blood test suggested that my immune system might be a bit dodgy - so the conclusion was to have another week without treatment and then go back at the end of the week to review the situation.
So this weekend - the side effects are wearing off and I have felt less unwell (double negatives have meaning people) than I have for much of the summer. So have done self indulgent things like eating too much - going to the pub - going to Aldeburgh, going to bed late and walking around more than usual. I have even thought ahead a few weeks for further pleasurable things to do. All this sounds good and cheerful - and in some senses it is - but - but - but - it is difficult to write about and also to interpret - the outcome is so unclear - nobody knows - the channel has no markers and one could run aground all too easily (see foam etc in the previous blog for the analogy).
Keep Calm and Carry on -
The latest Xray - when compared to the previous one - shows a smaller patch of cancer. Good stuff and (I think) rather unexpected. Is this the good and healthy life I am leading - or is it the chemicals - I suspect both but I am quite happy to give the chemicals due credit.
The latest blood test suggested that my immune system might be a bit dodgy - so the conclusion was to have another week without treatment and then go back at the end of the week to review the situation.
So this weekend - the side effects are wearing off and I have felt less unwell (double negatives have meaning people) than I have for much of the summer. So have done self indulgent things like eating too much - going to the pub - going to Aldeburgh, going to bed late and walking around more than usual. I have even thought ahead a few weeks for further pleasurable things to do. All this sounds good and cheerful - and in some senses it is - but - but - but - it is difficult to write about and also to interpret - the outcome is so unclear - nobody knows - the channel has no markers and one could run aground all too easily (see foam etc in the previous blog for the analogy).
Keep Calm and Carry on -
Another beach - Aldeburgh looking south
19-35: On Saturday we went to Aldeburgh to see the sea and I found a stone with a hole in it. Here is the beach with fishermen and the gravel bank along the narrowest bit between the sea and the river Alde - it looks as if one decent storm would cut through it. There are sea defences! The foam and waves over the off shore sandbanks may not show up on the picture here.
Thursday, 15 October 2009
I come out of my shell - a little
20-40: I tried to blog yesterday about having an incurable condition in contrast to people who have been cured. But I could not find the right words. Try again today - -
I have not done a lot of prodding the web for 'ways of defeating cancer'. I accept that advanced lung cancer (not spotted until at a late stage) is not susceptible to a cure. I guess this means that I do not set out to 'defeat' cancer - in the sense of it never coming back. There seems to be a strand in some peoples' thinking that implies that it is a moral failing if the cancer is not defeated by one's own efforts. One workshop participant seemed to have this view which set me thinking (rather than ranting as I might once have done!).
It maybe that the train and library was good for me - I had two nice and sensible conversations today with people I met around the marina and boat yards - partly about boats - partly about cancer. I have been aware of a protective shell around me. So abandoning the tidying of the flat to visit the boat and wander around in the sun was good - and not self indulgent.
I have not done a lot of prodding the web for 'ways of defeating cancer'. I accept that advanced lung cancer (not spotted until at a late stage) is not susceptible to a cure. I guess this means that I do not set out to 'defeat' cancer - in the sense of it never coming back. There seems to be a strand in some peoples' thinking that implies that it is a moral failing if the cancer is not defeated by one's own efforts. One workshop participant seemed to have this view which set me thinking (rather than ranting as I might once have done!).
It maybe that the train and library was good for me - I had two nice and sensible conversations today with people I met around the marina and boat yards - partly about boats - partly about cancer. I have been aware of a protective shell around me. So abandoning the tidying of the flat to visit the boat and wander around in the sun was good - and not self indulgent.
Tuesday, 13 October 2009
I go to Ipswich by train
20-30: I realise that I have not been out of Woodbridge often enough - it comes to something when a short train journey and a walk through a town centre is an experience. I went to the Library - to a writing workshop for people affected by cancer. I am impressed that local libraries are centres of activity well beyond book loans. This site, for example, has the best collection of links to cancer sites that I have found:-
http://www.suffolk.gov.uk/LeisureAndCulture/Libraries/HealthInformation/InformationOnPrescription/Cancer.htm
Rather a good workshop because it worked for everyone there - from experienced writers to those who were afraid to put pen to paper. I was the only one there who had not been 'cured' in some sense.
http://www.suffolk.gov.uk/LeisureAndCulture/Libraries/HealthInformation/InformationOnPrescription/Cancer.htm
Rather a good workshop because it worked for everyone there - from experienced writers to those who were afraid to put pen to paper. I was the only one there who had not been 'cured' in some sense.
Monday, 12 October 2009
I am aware of the Valley
19-45: I have been more aware of the valley of the shadow of death in the last few days. For one thing I have been reading and thinking about death and also collecting together poetry about death.
It is interesting that one seeks explanations for changes like this. Perhaps the surprise should be that I stopped thinking about death for a while, rather than that it has come back. However, I do think that getting my possessions out of their boxes makes me aware of mortality - and churns up the feelings. Yep - bits of pot, some books and old research papers have the power to do that.
But I spent today sitting around in the sun on the boat - which - as always - gave me courage to walk in the valley of the shadow of death and fear no evil - - .
It is interesting that one seeks explanations for changes like this. Perhaps the surprise should be that I stopped thinking about death for a while, rather than that it has come back. However, I do think that getting my possessions out of their boxes makes me aware of mortality - and churns up the feelings. Yep - bits of pot, some books and old research papers have the power to do that.
But I spent today sitting around in the sun on the boat - which - as always - gave me courage to walk in the valley of the shadow of death and fear no evil - - .
Labels:
domestic stuff,
the Valley
Wednesday, 7 October 2009
I move ashore
20-30: I have been living on my boat (with a break of a couple of weeks in Ipswich hospital) since early May - nearly five months. On Monday - I felt it was time to move ashore to the flat in Woodbridge - I think because the sky has clouded over and rain threatens, at the same time as the temperature dropped. So I packed essential gear (a surprising amount), loaded it to my car and left my trusty boat. It started to rain as I left and has hardly stopped since.
Today - the furniture and numerous boxes of gear and books were delivered and I am now trying to make a home out of piles of boxes.
The effects of the chemo-therapy has slightly reduced today. On Monday - I used the couple of good hours in the morning to move in - and spent the rest of the day lying around in a hammock. On Tuesday - I was able to do things for longer - I joined the library - and I overdid the action and had to retreat to the hammock for the rest of the day. Today - I unpacked boxes until lunchtime - then made sure the boat is OK and then rested for a short time (in a chair because the hammock was surrounded by boxes.)
Today - the furniture and numerous boxes of gear and books were delivered and I am now trying to make a home out of piles of boxes.
The effects of the chemo-therapy has slightly reduced today. On Monday - I used the couple of good hours in the morning to move in - and spent the rest of the day lying around in a hammock. On Tuesday - I was able to do things for longer - I joined the library - and I overdid the action and had to retreat to the hammock for the rest of the day. Today - I unpacked boxes until lunchtime - then made sure the boat is OK and then rested for a short time (in a chair because the hammock was surrounded by boxes.)
Sunday, 4 October 2009
chemotherapy -
17-30: this is about Friday, 2nd October.
I feel nervous each time I go to the Day Unit for treatment - and even more so today because I would like a brief chat with someone about how to handle a couple of problems that I am finding upsetting. But I get there fine - park - walk along the long corridors which are beginning to be familiar - I even know where the loos are. I carry a small rucksack of 'survival' gear - magazines, food and a CD player. I am stressed. I am early.
I wander around near the Cancer Information Centre - and a volunteer strikes up a conversation - and I tell him about some dilemmas I have with getting exhausted when people are kind enough to visit - after ten minutes and a few tears (hidden by my glasses) I go on my way - encouraged.
The process of the treatment is straightforward - I report in - I just have time to get a coffee before I am called in - I sit around warming a hand to get a good vein for the drip needle (which I don't even feel when inserted - but I did look away). I sit around waiting for the chemicals to be delivered and checked - looking at pictures of boats in a magazine and barely turn the pages before the small bag is delivered and dripped in. This particular one (vinorelbine) can have nasty effects if it gets out of the vein, so a nurse has to watch it in - but this is only for five minutes. A bit more messing with the tubes - and job done and I am out and back home (where I sleep it off for the rest of the day) a couple of hours after leaving.
This is the end of the second cycle of treatment - and I send good messages to the chemicals to get on and destroy cancer cells and leave the other cells alone. However - a couple of days after the first treatment I start to feel - - side effects. I find these difficult to describe because they are like nothing else I have ever experienced. I use the words 'fatigue' and 'zapped' - . The last couple of days I have felt OK for some of the morning - then I have more or less lay around for the rest of the day - apart from eating and blogging. Very boring - - but if it zaps the nasties - it is worth it. Last time, the side-effects wore off after the second week.
Detail
-------
The regimen is combined vinorelbine and carboplatin. The first treatment of the cycle has both - so takes longer than Friday. The second treatment is just vinorelbine.
I feel nervous each time I go to the Day Unit for treatment - and even more so today because I would like a brief chat with someone about how to handle a couple of problems that I am finding upsetting. But I get there fine - park - walk along the long corridors which are beginning to be familiar - I even know where the loos are. I carry a small rucksack of 'survival' gear - magazines, food and a CD player. I am stressed. I am early.
I wander around near the Cancer Information Centre - and a volunteer strikes up a conversation - and I tell him about some dilemmas I have with getting exhausted when people are kind enough to visit - after ten minutes and a few tears (hidden by my glasses) I go on my way - encouraged.
The process of the treatment is straightforward - I report in - I just have time to get a coffee before I am called in - I sit around warming a hand to get a good vein for the drip needle (which I don't even feel when inserted - but I did look away). I sit around waiting for the chemicals to be delivered and checked - looking at pictures of boats in a magazine and barely turn the pages before the small bag is delivered and dripped in. This particular one (vinorelbine) can have nasty effects if it gets out of the vein, so a nurse has to watch it in - but this is only for five minutes. A bit more messing with the tubes - and job done and I am out and back home (where I sleep it off for the rest of the day) a couple of hours after leaving.
This is the end of the second cycle of treatment - and I send good messages to the chemicals to get on and destroy cancer cells and leave the other cells alone. However - a couple of days after the first treatment I start to feel - - side effects. I find these difficult to describe because they are like nothing else I have ever experienced. I use the words 'fatigue' and 'zapped' - . The last couple of days I have felt OK for some of the morning - then I have more or less lay around for the rest of the day - apart from eating and blogging. Very boring - - but if it zaps the nasties - it is worth it. Last time, the side-effects wore off after the second week.
Detail
-------
The regimen is combined vinorelbine and carboplatin. The first treatment of the cycle has both - so takes longer than Friday. The second treatment is just vinorelbine.
another sailing club -
17-20: The Deben Sailing Club house: It is entirely built over the river - seen here at high tide. The new piling is to improve the club house.
I do not know whether I will be able to contribute here - and sail a Laser again. But I have signed up for it in the hope of doing so. I have also seen another class of dinghy which might be fun - a streaker.
I do not know whether I will be able to contribute here - and sail a Laser again. But I have signed up for it in the hope of doing so. I have also seen another class of dinghy which might be fun - a streaker.
Thursday, 1 October 2009
another beach - another world -
8-45: This is the beach at Tynemouth - in a rough mood in May this year. It was my old stamping ground and I often walked back from work along the beach via the coffee bar at the far end in rough and calm weather.
This is a complete contrast to the calm of the river Deben - and the warmth of this area.
It slightly bothers me that I do not miss Tynemouth beach - or the rough coastline of Northumbria. (It would probably bother me more if I did miss it!) But I wonder what is behind this - can I really abandon my 'old' life in the north and set up a new home here - and not look back with sorrow / regret and whatever. Is it a lost capacity to feel? Looked at in a positive way - it maybe because I am (surprisingly under the circumstances) happy here - and was not always happy in Tynemouth.
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