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.

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.

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.
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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.

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.

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.

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.

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

Health score - any economic historian can explain any chart - -

16-40: It is an image of a chart in Excel where I am trying to score how I feel each day - the point being to see whether there are any obvious relationships - and as a structure for understanding. I think it has potential. See entry for December 30th for definitions.

A friend - you know who you are and what I owe you - once said that any decent historian can explain any chart - which makes me reluctant to explain this - - - yet!

This covers 12th November through to 16th December - the time since the chemo regimen changed. The scores are subjective and sum up how I feel (physically and emotionally) each day. The highest score is 12 (which Excel clearly did not know about) and represents total health and happiness: I guess that the scores will go negative for big nasties.