Sunday, 28 February 2010

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.

Saturday, 27 February 2010

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.

Friday, 26 February 2010

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.

Thursday, 25 February 2010

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.

Tuesday, 23 February 2010

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.

Saturday, 20 February 2010

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.

Friday, 19 February 2010

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.

Monday, 15 February 2010

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.

Thursday, 11 February 2010

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.

Wednesday, 10 February 2010

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'.

Monday, 8 February 2010

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.

Saturday, 6 February 2010

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.

Monday, 1 February 2010

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.