a rant about voting - remember 1928

10-50 hrs: I have voted - I think I prefer to do my civic duty by going to the polling station - but have opted for a postal vote for some reason.

Why vote - even in a safe seat?

Because your vote does get counted in the overall total. And - more important - because people fought for the right to vote for a long time; the date for universal male suffrage in the UK was 1918. When my mother was born in 1916, most men - but no women - could vote. Some women could vote after 1918 but it was not until 1928 that all women could vote. 1928 - I still find this astonishingly recent. See my entry for March 10th.

Jaguar boat work in hand - -

17-40 hrs: The cockpit of the Jaguar. I am now busy with the new boat - mostly scrubbing and polishing but the cockpit is also good for resting in the sun. I am also watching the election and volcano news - the election having become mildly more interesting.

Yesterday - the fifth lot of vinorelbine capsules from Ipswich hospital: this is a much nicer way to take chemotherapy, with fewer side-effects: I also get the chance to talk to a MacMillan nurse, which keeps me in contact with how I am doing. This, and the healthy life-style, seems to be working.

things much as usual

21-10 hrs: There is a super all-day-breakfast-type cafe in a caravan on the quayside - between the houseboats and the railway, where we have eaten a lot of chips and all day breakfasts. They are closed this week for renovation. Part of the project appears to be to remove the old (1960s style) model and replace it with a newer one - closest to us in the picture. I just hope the food stays the same - - - . The caravan will be sited back from the quayside - roughly where the yellow skip is; they appear to be parked at the edge whilst they make the foundation larger - - - .

Otherwise all much as usual in Woodbridge - apart from sunshine and a couple of days cleaning off the old rubbing strake on the Jaguar. I continue to feel quite well although I do get tired. There are even the usual domestic annoyances - like the battery on my car being on the edge of wearing out. I spend a lot of time looking at pictures of the volcano in Iceland - and none looking at pictures of our great leaders.

continue to take mind off election

17-10 hrs: proof that the Jaguar has a keel - I had the boat lifted for inspection - interesting - exhausting. But the Jaguar's keel is fine and I am putting the purchase in hand.

So far this week - I have worried on about the boats and done a lot of domestic things (hoovering, shopping and so on). But I have also had some pleasant walks along the river and lunch outside. So not much to say really - except that it is oddly tiring and pleasant.

taking my mind off the election

15-50 hrs: A Jaguar 21 - I have contracted to buy this and paid the deposit this morning. More detail about this kind of boat at http://www.jaguaryachts.co.uk/jag21.html.

I thought I would not get another one until LA Girl is sold - BUT plans are made to be updated. I was thinking of buying something a bit larger and more expensive but common sense prevails and I have spent much of this week looking at smaller boats and decided to get one that has a bit of performance rather than live-aboard functionality.

I was so traumatised by this that I had to have a wee sleep in the sun this afternoon, but have bounced back enough to fess-up to the blog - and now head out for a coffee.

the river Deben and the spring holidays

10-20 hrs: Happy spring holiday to all my followers, friends and relatives.

I am being mildly active with two more rescue duties for Deben Sailing club (which has involved messing about in boats and driving a RIB up and down the river). I wear as many clothes as it is possible to squeeze into - it has been quite cold and windy, with the threat of rain. The dinghy sailors seem quite good at staying upright - so have not had to rescue anyone yet. I have also pottered around the marina, looked at any boat that comes near enough to be looked at and generally hung out in the milli-seconds of sun before the clouds and rain. Add to this a few visits to the gym and you can see that I am trying to build a bit of physical stamina ready for sailing a dinghy. LA Girl still unsold - so nothing yet on getting a new boat.

And I watched the end of the old Doctor Who on TV - and the start of the new series - hooray for tele (if I can keep away from it most of the time).

a chart over two chemo cycles - since mid Feb:

17-50 hrs: Cool or what?? The blue line is the wellness score with a dotted line for the trend line. The arrows are chemotherapy days with the new capsules. The red line is the number of 'social contacts' in that day - includes electronic methods. The black line - a five day moving average of the 'contacts' line. The dip in the blue line - a day when I felt ill.

OK people - make what you can of this! I quite like it because it has fewer ups and downs than previously.

rescue duty

12-00 hrs: Yesterday - I did a rescue duty for the Deben Yacht Club - very enjoyable but cold. A spring tide, so the river looked like a lake. I drove a mega-rib, so fun all round. I was a bit tired after - but not surprising. Main problem - getting up at 7-30 BST (6-30 GMT!).

the other end of the line

9-45 hrs: The other end of the line - Liverpool Street station in London. I had lunch here yesterday with Rhoda - and went to a couple of shops.

On Tuesday - after playing with a bonfire at the sailing club - I had another review at Ipswich hospital - no sign of nasties on the Xray and a helpful conversation with the consultant left me more cheerful than I expected. I continue to take the capsules - which seem to have fewer side-effects. I was worrying that this meant they were not working - it is amazing what one can find to worry about!

I was so pleased by this, and by having lunch out yesterday, that I have bought a new radial sail and lower mast section for the laser - so I will be sailing it! I also discover that the club seems short of rescue crew - so have already been allocated a duty (on Sunday)!

more boats emerge

16-30 hrs: Boating activity is increasing on the Deben - several yachts and motor boats went up and down the river. Here the dinghies of Deben Yacht Club jill about before a race - in light wind and bright sunshine.

I jilled about in the boat yard getting a laser ready to sail. I fear I may get too out of breath - but the only way to find out is to try. I also ate traditional sailing club food - bacon butties - yum. It was so warm for a short time that I wore only a tee shirt (and trousers!) - but had to put on all the thermals again when the wind got up after lunch.

More days like this please.

Woodbridge end of the line + an update

20-00 hrs: A train from London coming into Woodbridge station. This picture has no particular relevance to the post! I just took it yesterday.

If you have not heard from me lately - this is because I have a new bad habit. Time was when I wrote blogs, letters and emails at various times in the day and especially in the evening. Now I watch TV and DVDs (at least in the evening) - I am hoping the novelty will wear off without a big effort.

I am feeling a lot better than I did a couple of weeks ago. I hope this lasts! I am pottering around doing the usual things - domestic stuff, going to University of the Third age groups and messing about a little bit with boats. I am hoping the boating bits will increase as the weather improves. I continue to go to the fitness centre and am still improving my muscle tone. The big problem is still breathlessness if I do not pace my walking speed.

I started on a different mode of taking the chemotherapy a couple of weeks ago. I get capsules from the oncology unit in the hospital but take them at home. This is much less hassle and seems to produce fewer side effects - which I also hope will last. Obviously.

signs of spring - again

20-35 hrs: This is of the start of boating-life awakening along the river - heralding the spring. The crane is lowering new pontoons into the river - to be followed in due course by boats currently standing in boat yards and hard standings. The moorings are empty, but for a few overwintering boats. There are still very few spring bulbs in evidence but the weather is getting better.

The spring seems to have a particular importance this year because I really want to get on with my outdoors life and (like everyone else) I am truly fed up with winter weather. I have a Laser to sail in a couple of weeks. It would be lovely to sell LA Girl so that I can also have a small cruiser to explore the rivers. And I have my eye on a few nice bits of beach for lounging around on.

I find it strange that there are very few boats on moorings and those in the marinas do not seem to go out for a sail, even when there is a good wind and some sunshine. I am wondering what they know that I do not know.

I have felt a lot better for the last couple of weeks, although I have not blogged much. And why is this? Because I have been gawping at the tele and DVDs far too much. I hope I shall get over it soon and go back to normal amounts of writing and gawping! There seems always to be some bad habit to deal with - - .

Camden Lock

20-42 hrs: Camden Lock, London.

A very enjoyable time walking round the market here today. Good to see Camden market so popular - even if it means pushing our way through crowds of people. I am now back home in the quiet of Woodbridge - but glad to have felt the vibes of the big city.

Monday's child - -

9.30 hrs: I expect there is a more idealogically sound ending - this is the original - thought to have originated to teach the days of the week. I was born on a Monday apparently. Cool.
-------------------------------------

Mondays child is fair of face,
Tuesdays child is full of grace,
Wednesdays child is full of woe,
Thursdays child has far to go,
Fridays child is loving and giving,
Saturdays child works hard for his living,
And the child that is born on the Sabbath day
Is bonny and blithe, and good and gay

International Women's Day: Thursdays Child

14-15 hrs: anything to get away from housework - - took their pictures instead of hoovering.

These are my 1970s 'women's lib' earings - and I do try to live my life by feminist precepts. So remember folks - I do not burn bras (and you are allowed a brief laugh here) - but I do vote. Women did not get the vote when my mother was born in 1916 - the dates 1918 but really 1928 when all women could vote. Reliable contraceptives - 1961 when the pill became available.

So recent! Still far to go - thus Thursdays Child (has far to go).
Spend a day noting bad gender things in the media - you will be shocked.

signs of spring -

21.40 hrs: The bike and the boat represent the possibility of spring. I have painted the red anti-fouling on the boat - and mended the rope rubbing straik. And I am intending to ride the bike often - it has been shut up indoors due to rain and snow.

There are not many other signs of spring - a few snowdrops and crocuses - no daffodils yet - a few green shoots on shrubs - birds all doing winter things. I am still wearing thermals when I walk along the river. The sun has shone a few times lately - which may encourage buyers for my boat.

Some more figures -

20-20 hrs: As I have reported previously - I have found (for all that I have serious experience of finding information) it pretty difficult to find even outline figures that are reasonably up to date. I don't have access to University library resources. Are the figures deliberately not summarised on the web because they will upset people or does this illustrate that lung cancer is not as well-researched as it should be?

see http://www.touchoncology.com/categories/lung-cancers
specifically:-
http://www.touchoncology.com/articles/unmet-needs-treatment-metastatic-non-small-cell-lung-cancer

I have recently found the following:-
Survivial rates in randomised studies (of platinum-based drugs taken with another drug) over the last decade = median survival of 8 to 11 months in the studies. No figures about patients not in trials.

There are improvements in survival reported with second line therapy (ie after the cancer has become resistant to the first lot of chemo:) The mean of these is reported as less than a year, although they may also improve quality of life.

You will be glad to know that I am now going to give up trying to find figures. Back to pictures and the trivia of everyday life - and possibly my worries about disease progression (observed as happening with a median of three to six months of initiating chemotherapy- - ) - this really is the last figure!

Dear friends, followers and family - thank you for reading my blog - it is unspeakably helpful to me to know you are all out there - even (as Meemee did yesterday) if you argue!

This week is six months since diagnosis

19-30 hrs: This week marks six months since diagnosis with advanced lung cancer. 'Diagnosis' is not a very accurate point in time - especially as lung cancers are thought to develop over many years. I really cannot pinpoint a starting point, although I was first obviously ill in Wells - in June, and may have been feeling the effects a couple of months earlier.

So general survival figures are flawed, quite apart from other factors, such as differences according to the type of lung cancer, the stage of the cancer at diagnosis and variations according to social status. But they provide a framework for understanding. These from the Office of National Statistics - survival rates in England - diagnosed 2001 to 2006. All lung cancers - all stages.

Women - 60 to 69 -
-------------------
- one year survival = 35%
- five year survival = 11%

This from BMJ/Guardian for 2009:-
all ages / men and women - Non-small cell lung cancer - diagnosed at stage 4 (advanced)
-----------------------------
- five year survival = about 5%

Why am I telling you this? Because I have been thinking about death and survival - and I found general figures - eventually. Sites are a bit coy about putting lung cancer figures in the public domain - perhaps they confirm lung cancer as a cinderella cancer for death rates are much higher than other cancers.

Pondering death and cancer

Sat: 20-30 hrs: I don't think I am so much suffering from depression as from a great sense of uncertainty about how to live life and the way ahead. I have tended to use the word 'rehabilitation' but I am not sure that this is the right concept because it implies a cure.

Obviously - it is not appropriate to plan and live as I did in my old life (although I would like that life back!). Yet I cannot just sit around and not make some effort towards a new way of living. The way ahead is horribly unclear; it is as if I were sailing up a creek without any bouyage or charts. Has anyone marked the way before? I have done a lot of surfing the web and have not found what I need - except - - .

Yesterday I bought the Guardian and sat down to read it in Costa coffee. I spread it out and see a picture of a handsome woman on a full page spread with information that she is suffering from terminal cancer. Dr Ann McPherson. Her words touch a nerve - reporting that she is trying to " - - achieve a balance between living as normal a life as possible and making the very most of my last living days - - " And there it was - simply put - in outline - what I was trying to do without saying as much. So I searched the web for her and found more things I needed, and especially her association with work on people’s experiences of health and illness. And so - a section on lung cancer - a navigation chart - - with bouys marking the channels.

So today and yesterday - much web surfing and some helpful things. And I watched a Buffy DVD! Oh - and I walked along the beach at Felixstowe Ferry and ate chips in the cafe there - nice.

Martello Tower in Africa

12-50 hrs: This is the one in Freetown, Seirra Leone. Amazing. (The top bit is a water tank - so even here one is put to a modern use). See 8th Feb: post about Martello Towers - and thanks to Helen for the picture.

cancer review - the downs are not just side-effects

19-20 hrs: Today - to the hosptial for an appointment with the consultant for a review. I really don't know how best to report on this because the whole process is a bit mind-bending, not to say tiring.

One surprise was that there is a bit of the cancer visible on the Xrays as 'suspicious' bits - I had not quite appreciated that they are visible but they are there on the earlier Xrays as well - so I assume I did not look as closely as I did this time. Apparently - if it were not being treated with chemotherapy, it would develop quickly. I knew this but needed to be told again - it shows that I really have got it, even if I cannot see it or feel it.

So what about the side effects I have reported in earlier posts? Some of them may not actually be side effects. Some of the symptoms of delayed emotional reaction/ post traumatic stress / depression are mistaken for side effects. I wonder if issues associated with emotional reactions can be more readily addressed than physical reactions to harmful chemicals - or what.

And the treatment - carry on taking vinorelbine - but in capsule form. Carry on walking along the beaches of Suffolk - preferably in sunshine. Carry on sailing - hopefully in a smaller boat (but in the Southerly if it has not sold). Carry on getting fitter. But no sunshine on the NHS! I shall develop a plan for dealing with emotional reactions (which one might call depression I suppose, although it does not feel the right word) on Saturday when the sun is due to shine for part of the day.

downs continue - -

19-30 hrs: The slight improvement reported in my last post has not continued and I spent most of Sunday and Monday asleep - slightly better today. I think this continues to be the side effects of chemotherapy, so I am a bit optimistic that is will wear off. I also blame the weather - lots of heavy rain for days.

I felt so rough on Monday that I bought a TV to watch Dr Who programmes - only to find out that the arial I have here does not produce enough signal to connect to the Freeview in the TV. I have not had a TV for nearly a year. I note that BBC News Online is better than any of the news services on TV.

Later - Wednesday - I checked the post code here as to whether I can get Freeview. Reply - 'Unfortunately, you won't be able to receive any Freeview channels now - -'; I thought you could get Freeview everywhere - I am annoyed by this.

recent downs in cancer rehabilitation

19-20 hrs: Covers four weeks - two cycles of chemotherapy. There has at least been a bit of an upturn - but not when expected.

I feel that the chemo is now causing more trouble than it is worth - which I have not felt before. The last weeks were also more difficult because I have got used to the idea that I would return to feeling more 'normal' before the next lot of chemo therapy.

Old habits return all too easily and I have made 'to do' lists for most days in the last two weeks - a bad idea and it suggests I am trying to do too much. So today - chilled out by wandering around Woodbridge and visited the boat, although I did unfold the bike to welcome the sun.

Ups and Downs of cancer and treatments

19-20 hrs: The normal pattern with chemo therapy has been a week or so of gradual 'down' after treatment. This is then followed by a week of gradual 'up'. Each time this pattern is different in detail but works as a generalisation. The last cycle was different - my feeling of wellbeing went up for a couple of days after but since then it has gone down and continued to go down.

I have found this difficult - partly I became used to the previous pattern of ups and downs and have resisted accepting a new pattern. But also I did forget that health can go down as well as up - whereas most of my expectations are for things to get better - and then get frightened if the trajectory is not upwards all the time. I also think I may have been trying too hard to get back to 'normal' through rehabilitation - working out in the gym, joining various groups and meeting people. Most of the 'down' has been an increase in breathlessness and more indigestion than usual. More chemo today - so we will see what happens next.

So a week of unexpected difficulty - not to mention some hideous wet weather after the weekend.

beach along the River Ore estuary

8-30 hrs: Looking south (away from the wind and rain on Saturday) - the really scary entrance to the River Ore on a falling tide and this in very little wind.

The beach here continues from those further south (see Saturday 6th Feb: for a previous visit there) and lined with Martello towers (see Monday 8th Feb:). The shingle is steep to the sea and hard to walk on - and at the top of the beach - tough plants. Very good to see the North Sea again - I will be back to the gravel and will sail into this estuary later in the year.

Tynemouth sailing club: thank you

14-05 hrs: There is a yellow bouy off the lighthouse here -(St Mary's lighthouse, Whitley Bay).

There is an annual dinghy race from the mouth of the Tyne to this bouy and back - (note the typical sea conditions in the picture). For some years I was race officer for this race and some people were kind enough to enjoy it and state it was the best race of the year etc etc. They usually said this when the thick, black mist descended (yet they still got back) or the wind got up (and they still got back). The resue fleet (run by the wonderful Red Seal Rescue) also enjoyed it for some reason best known to themselves (they are young). So fun for everyone and terror for the race officer (and the ARO - usually Howard Thomson (known as HT))

Tynemouth Sailing club voted to rename this race the 'Scammell Dash' . I was extremely touched by this recognition and this log entry thanks everyone at TSC for doing this - and for their kind thoughts since I was ill - and thanks HT for enjoying it with me for many years.

Current meanings of health scores on graphs

13-45 hrs: I thought I should list the ones that turn up in graphs again -note that I know this is subjective. However - I find it remarkably helpful.
------------------------------------------------------
11 - very well - I live a more-or-less normal life - if at a slower pace. Less breathlessness
10.5 - very well - feeling nearly normal - if at a slower pace. Not noticeably fatigued. Rehabilitation. Breathlessness continues
10 - very well - nearly normal life - if at a slower pace. Less breathlessness and fatigue.
9.5 - well - Improvements in breathlessness and heart rate. No indigestion etc. Can get tired if do very big things. Feel OK.
9 - well - Improvements in breathlessness and heart rate. No indigestion etc. Can get tired. Feel OK
8.5 - well - breathlessness notable. Can travel OK. Can handle hassles - less fatigue. Indigestion little.
8 - quite well - some breathlessness - can avoid sleep in afternoon. Some fatigue and struggle to do things. Can travel. Indigestion - mild.
7.5 - quite well - fatigue + breathless - can avoid sleep in afternoon. Can travel. Indigestion - mild.
7 - quite well - fatigue + breathless - can avoid sleep in afternoon; may feel gloom. Can travel with care. Indigestion - but less bad.
6 - aware of being less well - fatigue + breathless - I have to sleep in afternoon. Need to manage energy levels. Indigestion.

Feb 10th - health score of cancer rehabilitation

13-40hrs: It does look as if the trajectory is better this time round - nice.

Cancer- Case Notes on radio 4

12-30 hrs: good stuff in Case Notes about cancer in general and lung cancer in particular. It also follows the thought that, as treatments become more sophisticated, many cancers will be kept in check and managed as a chronic condition- for years. I liked the bit about 'years'.

Martello towers

14-55 hrs: this is the only picture I have (at Shingle Street) because I keep forgetting to take portraits of them.

Along this coast these stunning, round towers were built between 1804 and 1812 to keep the French at bay. They are spaced out from Aldborough to Sussex and anyone walking or sailing here will see them so often that they are taken for granted. They were built with solid brick walls about three feet thick - the brick coming from London by barge. There are Martello towers world-wide, from Sierra Leone to Canada to Australia. More - and a map.

Driech weather with snow today in contrast with Saturday.

A beach - in sun: and brain stuff

17-45 hours: The shingle beach by Bawdsey - looking towards the River Ore entry. The white dots are the buildings at Shingle Street. I walked along the beach in warm sunshine, but I was wearing three thermals. Back on the footpath - very muddy, so new boots essential. Passed four Martello towers - awsome. I walked five miles - slowly with frequent rests and food/drink inputs.

Heard and saw two skylarks - I have not heard one for years - - . A very pleasurable day.

I felt better today and yesterday - almost 'normal'. In the last few days I have also found that my brain has rebooted and is willing to do some thinking again - long may this last for many reasons. I have spent time doing work for the U3A in East Suffolk around a web site with their web site team - a team meeting (lasting 3 hours!) and various things I volunteered to check out afterwards. I am even going to set up my laptop to learn new technologies - - um.

But yesterday - chemo again, so the graph will no doubt head down again. But today - think normal.

the mysterious number at the beginning of each blog

20-30: What does this number mean?

Sorry for confusion - it is the time (GMT in winter - BST in summer) when I start to write the blog. I did this because the times posted shown at the bottom are figments of the imagination of the servers which host the blog. I assume these are in a different time zone and were apparently showing posts in the middle of the night! I shall write it thus in future - 20-30 hrs:

I felt horrible over the weekend but I suddenly felt more 'normal' today - thanks for electronic hugs - they do help.

the week in Woodbridge

19-45: Yea - another diagram - the black line is a trend line added by Excel. All done now on my new computer - after many a skirmish with drivers and setups: and new versions of software with icons instead of words.

The diagram is supposed to explain why I have not written a log since Sunday. It covers two cycles of chemotherapy and shows peaks just before and for a day after chemo-therapy. Important for this week - it shows a dip after chemo for about a week. (At Xmas this was not so intense and I don't have an explanation for that - maybe my brother looked after me well.) .

The worst side-effect is fatigue, combined with some indigestion and despondancy. Hard to describe - I seem to be able to do things in the morning - but then have to write off the rest of the day. But not an entirely empty week - but it felt uphill and unsatisfying. I paid my tax - did some accounts - went to the gym - wore my new boots for a walk - made a bonfire (inspite of the wet) at the sailing club to rid the boat park of a lot of debris - went to the supermarket - walked past my boat - connected the printer - downloaded some drivers - copied some files from my other computer - went out to a talk about wind farms - and so on.

This sounds pretty gung-ho; I have not felt like that most of the week but found it hard to write the darker feelings as they happen - and when they go - I like to forget them. So don't forget that you are reading a biased version of the whole-Lorna.

The dredger - dredging

20-15: The probescus goes down into the water -the toothed bit spins round and the mud is sucked through the pipe (just visible floating across the marina) and is deposited into a settling pool to reclaim a bit of land. The whole thing is swung across from one side to another. I watched this today when I might have been mopping the bilges.

A flash of sunshine earlier - sat out in the favourite cafe and ate a cake. It got cold in the afternoon and I did eventually mop the bilges - which had a bit of water from the rain and melting snow.

Two days since the last lot of chemotherapy and the onset of side effects again - which I resent as I was getting used to not feeling zapped-out. So I have done nothing since I got in - - - galling - - - and I have to remind myself that at least I am alive - - .

sea fever - -

18-10: In the Shetlands in my old boat - a MacWester ketch - in 2008. Wonderful sea state and rocks to avoid. Thanks to Aidan for the picture.

I visited my boat today - it has stood up well to the rain and snow (but needs the bilges mopping out) and it cheered me to sit on it. And the low cloud made its way up the Deben and the driech weather continues - and I continue to rant about the weather, as we all do. Consoled myself by playing on my new computer - and surfing the web for replacements for LA Girl. Feeling that side effects are going to catch me out in the next few days.

Winter - is icummen in

Says it nicely - heavy rain again today - with fog and mist. Snow forecast for Monday. Interrupts the trivia of everydaylife a lot.

A quote from 'Ancient Music' - Ezra Pound - sing it to Summer is a coming in - - I apologise if I don't need to tell you that!

Winter is icummen in,
Lhude sing Goddamm.
Raineth drop and staineth slop,
And how the wind doth ramm!
Sing: Goddamm.

Skiddeth bus and sloppeth us,
An ague hath my ham.
Freezeth river, turneth liver,
Damn you, sing: Goddamm.

- - - -

U3A - geology and a cool website

18-10: My only remaining fossil; the rest have been lost in the move - along with boxes of rocks. A very old interest which I thought I would never come back to - - but things change.

So the relevance of this is - - that I have joined a geology group of the University of the Third Age. I met the group for the first time this morning but have spent time reading the text book and browsing various web sites about local geology.

And how about this as the coolest web site showing animations of plate tectonics and changing continents. The north Atlantic one is good - lots more stuff on this site.

trivia - weather - an upward trend again

21-25: One little grebe (dab chick) - a borrowed picture until I can take one - I am feeling better now than at the start of the week and the graph has crept up a bit.

The most annoying and non-trivial thing - my desktop computer refused to work - so a new and shiny model is due for delivery next week. (This is done on my trusty laptop). I lost about an hour's work on one file - amateur!

I really detest the winter - it is not just the wet, dreich weather - or the ice - or the dark nights - or the gas bills - . It is the complete lack of sailing. I can stand it for a while - but this week sees the beginning of me looking longingly at the water - where I belong. Double frustration because no-one has bought my boat yet - perhaps hardly surprising as the marina has been covered in snow.

I saw dab chicks (little grebes) feeding along the Deben in several groups of about ten - they dive and then spring up when they surface - cool. I puzzled over what they were for some time. There are a lot of other birds feeding in the mud as well - I mention curlew and a shelduck in particular. If it were not wet - it would be nice to walk along the river and watch them.

I have started an earnest attempt to rehabilitate the body through going to the gym. I have had a couple of sessions with the trainer and now have a structured plan - which I have just started and about which I will give detail in another post. This, and the breathing and the stretching, seems to be doing good - I walked faster today than usual, with only a little breathlessness. I actually like doing excersises and going to the gym - or it would not be a viable option!

Score over two cycles of chemotherapy

19-20: See Wed: 30th December for definitions of the scores.

Since I started to write this blog - in March 2009 - I have felt that it is easier to write about the bad stuff with a sort of self-deprecating humour. I reject this in theory but in practice feel that I did not manage to convey the darker side of sailing. Nor do I convey the ups and downs of my present life. Mostly I am quite cheerful and (on occasions) happy - which I explain in terms of the pleasures of being alive. Yet if it is to be an honest blog - it has to have the downsides.

One reason for trying to give each day a score is that it gives a sense of the up and down of chemotherapy. This diagram shows I have felt pretty unwell for a few days - since the last lot of chemotherapy. This contrasts with the downs after the previous lot. Why the difference - if I were a historian - I would try to explain it in terms of Xmas and the weather! As it is - - I have no idea - - . I just hope the upturn today continues - - in line with previous cycles.

The snow is melting fast today - so I walked along the river.

More snow today -

20-30: The boat under its cover - with snow. It snowed last night and now lies at about 8 cms.

Winter - but not overwhelmed with snow - Jan 7th

19-55: mud and snow downstream over the Deben.

Breathlessness, heart rate and excersise.

11-10: For doing moderate excersise - it is necessary to increase the heart rate. However - I cannot get my heart rate up because I get out of breath before I have done enough excersise to get my heart rate up. I have not seen this mentioned on any of the lung cancer support web sites; maybe it is taken for granted.

The best suggestion I have had about this is from my brother - whose idea is to do specific breathing excersises to increase lung function and capacity, in the expectation of reducing breathlessness. So - back to the web - and after much searching I found three very useful-sounding things to try.
i) Deep 'belly' breathing to practice taking deep breaths.
ii) 'chinese' excersise, which involves taking three short breaths without breathing out and raising the arms at the same time: lower the arms with breathing out.
iii) Take deep breath, hold for five seconds and breath out slowly through a small opening of the mouth.

I am doing the 'chinese' excersise twice a day and the others from time to time. I expect this to take a while to have any effect, and may not deal with breathlessness caused by chemotherapy. But worth a try.

Cancer and excersise

18-00: Slight snow in Woodbridge; more forecast. River Deben looks wonderful in winter weather.

There seems to be a reluctance to encourage serious excersise as part of cancer rehabilitation - although there is some knowledge and research on the subject.

I have started to do specific excersises to increase strength, reduce fatigue and generally improve fitness. These are based on a programme I did some years ago which involve doing about 20 minutes every morning at home - very enjoyable (the programme is in a book - Jorge Criuse, 8 Minutes in the Morning). I rarely use the car and have done a lot of walking around Woodbridge to the boat, shops and along the river. I think these have done some good and I do feel less unfit and fatigued than formerly.

I expected to find a system of excersises designed for people with lung cancer. So - I spent ages looking for information on the internet - with no success. On Monday I was at Ipswich Hospital (for a blood test and chemo-therapy) and went into the Cancer Information Centre where I found Excersise after Cancer Treatment, a MacMillan Booklet. This had useful general information - AND success - - it referred to a web site for National Association of Cancer Exercise Rehabilitation . This has up-to-date links to research into cancer and excersise and much else, including a free guide on how to exercise after a cancer diagnosis. This has the advice to go for for moderate excersise - to raise the heart rate (eg 60% of 220 beats per minute - age). (This comes out as 91 for me).

I have joined the gym - conveniently located next to my flat! I also get five short sessions with a personal trainer as part of the joining deal - cool.

A chart - since November 12th

12-05:
Covers the whole time since I started playing with scores and includes several days at the start when I had a long gap between the first lot of chemo and the current regimen (just vinorelbane). Compare with previous post - fun or what! But the important thing is I am feeling better - one way and another.
It is still snowing.

A chart - since 24th November

11-25:
The chart starts on 24th November and now has a trend line as calculated by Excel. I am not sure what this actually means but it gave me amusement to construct it. I have another one that shows much less improvement - it depends where I start the data series. So not only can I interpret any chart - I can construct them to show different trends from essentaially the same data.
It is snowing here.

Happy New Year

2009 / 2010 midnight
St Andrews Market Square, in Scotland - the view from the window where I lived until 1990. My thoughts go back there at New Year because the Scots know how to do it - and then need several days to recover. I will not forget - - .

Should auld acquaintance be forgot,
And never brought to mind?
Should auld acquaintance be forgot,
And auld lang syne?

CHORUS:
For auld lang syne, my dear,
For auld lang syne,
We'll tak a cup of kindness yet,
For auld lang syne!

auld lang syne - times gone by - Old Long Ago

Happy New Year to all my friends and family, wherever you are.
xxx

Health score definitions for reference

21-40: Score definitions: This is obviously subjective and is about general feeling of illness: it thus combines physical and emotional. I am going to refine the methodology to see if the ups and downs are related to anything.

Score
over 12 - not much breathlessness. Not much aware of illness
11 - Little breathlessness. very well - I live a more-or-less normal life.
10 - very well - I live a more-or-less normal life - if at a slower pace. Breathlessness allows some change in heart rate.
9.5 - well - Improvements in breathlessness and heart rate. No indigestion etc. More active and feel better than 9.
9 - well - Improvements in breathlessness and heart rate. No indigestion etc.
8.5 - well - breathlessness prevents heart rate. Can travel OK. Can handle hassles. Indigestion little.
8 - quite well - some breathlessness - can avoid sleep in afternoon. Some struggle to do things. Can travel. Indigestion - mild.
7.5 - quite well - fatigue + breathless - can avoid sleep in afternoon. Can travel. Indigestion - mild.
7 - quite well - fatigue + breathless - can avoid sleep in afternoon; may feel gloom. Can travel with care. Indigestion - but less bad.
6 - aware of being less well - fatigue + breathless - I have to sleep in afternoon. Need to manage energy levels. Indigestion.
5 - feeling off colour - fatigue breathless - I have to sleep in afternoon - gloom. Indigestion.
4 - more off colour - more sleep - gloom or depressed. Indigestion.
3 - not worked out yet
2 - not worked out yet
1 - not worked out yet
-1 and below - values are various levels of being ill

I am back - and another beach

18-00: I was in South Devon for Xmas - this is Slapton Lea (I first went there nearly 50 years ago) - the best beach I walked along with my brother, even tho' there is no sand. Nothing in the direction of the picture but a good pub behind me, where we had excellent coffee to give us the strength to walk back.

Thanks to Roger for many kindnesses and a lot of cooking so that we could gross out in the proper seasonal way.

Christmas 2009

19-30: There is still snow on the ground here - in some places white and smooth and good for playing. It did thaw into a slushy mess in places today. I don't think they are used to snow here as there are no tobogans and no snow-men.

I will probably be off-line until next week - after the three boxing days following Xmas day. I am off to see my brother in Devon (by train) and I am not going to take my laptop. I am hoping to hole up infront of his wood-burning stove, avoid eating too much and maybe go for a few walks. I am feeling a bit tired just now - partly due to excessive shopping at the weekend! - but I really blame the usual side-effects of chemo.

Thank you for your various letters, emails and cards - it is lovely to hear from you and it is also wonderfully life-affirming.

Snow in Woodbridge

9-25: View from window at 8-45. So it does snow in Woodbridge! Snow in extra time - to be enjoyed when I get my thermals on - and until I need to get the car out this afternoon.