Images of London in one go - the Tower and a real London bus with a platform at the back.

Wednesday to Friday: I went to London - met Aidan by the Tower and stayed over with him. Then visited Helen; we went on the river back from the Tate Modern (food and drink - not art) to the new pier at Vauxhall. Then to Covent Garden (old stamping ground) on Friday - more eating and drinking.

I was aware of it being much harder to breath - so I walked around quite slowly but still got too tired for comfort. I have the first chemo appointment booked in for Tuesday next week, with a blood test the day before - so I become medicalised again - better than the alternative but it makes me feel gloomy. There are weekly infusions (and blood tests) for three weeks and then a week without one - called a 'rest'!

I am not coping well with this - I feel too gloomy, breathless and tired to do so. But I am intending to go to geology as usual on Monday and to host a meeting here about the U3A web site on Tuesday. I am also trying to catch up with the general admin of life and writing to people.

The last pile put in place for the new slipway.

Progress on the slipway - last week - the last banging-in of the piles. This is just the start.

Also a new start in my life again at the end of the week. I had a review with the consultant on Friday and this time the Xray shows that the cancer is starting to stir again (like a volcano!). So an end to the carefree days of no chemo and not much worry.

We discussed various options and concluded that I should try something that is not as heavy as the stuff I had last time. So I am going to try gemcitabine. If this is not effective, then the choice can be extended to something else. It is not quite organised yet but I am likely to go to the Day Unit every fortnight for this and it will take about half an hour to feed it in.

I was upset and shocked on Friday - I had got used to life as it was, although I was not entirely surprised that it was starting up again. I have tried to draw on a few inner resources - not entirely successfully. But I went to the beach in sunshine yesterday and I have calmed down enough to write this update.

First blog picture on my new camera - the files are too large. Small fish eat at the surface in the river. You cannot see the fish but they disturb the surface. No idea why they have not been eaten by birds or bigger fish.

I saw the consultant today and reviewed a lot of Xrays. This was good as there are no signs of any nasties growing again and today was better than six weeks ago. And I am also feeling better than I have done for  some time. Apparently this is unusual so we don't know where it is going. The Plan is to keep a watchful eye on things - and carry on as usual. Even the weather is good and the meccano part of the new building in the marina is almost complete.

The framework was nearly complete yesterday.

I am 70. I bought a badge and scanned it at a wonky angle for better effect.

I was looking for one that said 'I am 70' but they don't seem to have them in Ipswich or Woodbridge - they don't even have them for children. Maybe they are not in the best of  taste. Anyway - I will wear it sometimes as some sort of gesture of survival.

I visited the consultant yesterday - no long waits nor any boredom. The conclusion - the blood tests still show some effect of toxicity but nothing to get excited about. There is no sign of the cancer doing anything nasty - or indeed anything at all. So the Plan is to keep off the killer-chemicals and keep an eye on how I am and feel. So no side effects for a while - yippee.

I am going to try not to worry about it all as there is nothing I can do except eat vegetables and generally live a healthy life. Oh - and make sure I do not ignore symptoms that I ought not to ignore.

So am also finding a few brain-things to do - from geology to figuring out how to upgrade the U3A website - interspersed with scanning my photos - hard work and needs a new scanner.

Striding Edge in the Lake District - a metaphor

I have walked this several times - years ago. It is a metaphor for how my life feels just now. I walk in the sunny uplands rather than in the valley of the shadow - but it is often a narrow path with steep sides - and things can go wrong. It is a very beautiful, if scary, walk along the Edge to Helvellyn - so the metaphor is quite a good one.

Today I feel as if I might slip off the sunny uplands. Yesterday I was due to have a maintenance dose of Pemetrexed as usual but this was aborted becuase the blood test results for kidney function were outside the limits. Some more blood tests showed that it was not due to high blood sugar or leaching of calcium from my bones - which is a good thing. It is probably due to toxicities building up from the chemotherapy - and so I am off the drug for a couple of weeks. This has the advantage of no side-effects - but I worry about whether the 'holiday' from the chemo will allow the cancer to grow again (although I am told it won't grow in that short time!) and also whether it is knackering important organs. Fret - fret - worry - worry - all rather pointless but understandable.

So I take active steps to do stuff - a long session in the gym and now off nurture Lookfar in sunshine (for once).

I saw the oncology consultant on Thursday.

There is no easy way to say this - it is easier to write about the nice things in life. I am in the valley of the shadow of death again, having lived in the sunny uplands (and some of them very sunny) for so long that I have perhaps forgotten the shadow.

The cancer is growing again, maybe not unexpected although the implications have not sunk in yet - and we do not have enough information to know where it will go. I have not taken cancer meditation for some time and  I cannot continue with the wonder-drug (Tarceva) on which I did pretty well for well over a year. I am to get another lot of chemo (combined peretrexed and cisplatin). The side effects are a lot harder than the chemo I have had in the last couple of years. I have to go into the oncology ward to get the treatment and then stay overnight, getting out the next day, all being well. This starts next Sunday.

 Dear friends - thanks for your support and communications - they comfort me beyond what I can express.

Appendix

Look back to around Sept 2009 for earlier references to the valley. It comes from:

Yea, though I walk through the valley of the shadow of death, I will fear no evil,
for thou art with me;
thy rod and thy staff comfort me.

What I have not said during recent posts is that I am feeling less well than usual. This is due to being very breathless when I do anything much. I even struggled to empty the dishwasher the other day. This dates back into July.

Last week was spent worrying, getting an xray, worrying, writing emails and visiting the oncology department in Ipswich. In between - a bit of shopping and the usual trivia of domestic life.

The current position is that the breathlessness is not due to gross return of cancer - which does not show on the xray. I am to have a scan to narrow the likely causes - which maybe a reaction to Tarceva or minute blood clots or an infection.

So I am hanging out and trying (not very successfully) to be restful and calm  - and of course - - -

"But at my back I always hear
Time's winged chariot hurrying near;"

Where are all the wigeon gone - - - -

9-40 hrs: I have only walked the river bank a few times lately - and only seen two wigeon - so I assume they have gone off somewhere exotic to lay eggs and generally work hard. There are fewer birds feeding along the river than usual - which I take as a subtle change ready for spring. There are lots of flowers on the sloe bushes - all ready to produce fruit for us to collect later in the year.

And my boat - still uncleaned - but I am going to get it in the water this month - so I can sit on it in the sun. I have not felt like doing it lately. Yesterday - rescue team training at the sailing club - mostly sitting on boats in the sun, giving my opinion about when to drop an anchor and drinking tea - fun.

I have not felt like writing for a while. I don't know if spending a couple of days on the Forums was too much for the system! But also I have been feeling less well for a few weeks and ran into the circular problem of living for the moment. If you live for the day - then there is no tomorrow - so you have to do everything today - and get exhausted and depressed as a result of not being able to do it all. I seem to have anemia as a side effect of Tarceva. It also seems that eating lots of beef (nice) and liver (ugh) does not do the trick because the Tarceva interfers with the development of red blood cells. Planning to do fewer annoying things - we will see - - -

OpenZone hotspots in the Woodbridge area

9-45: hrs. The end of this week marks 18 months since I was diagnosed with Lung cancer. I have some vague sense that this is a sort-of birthday. So a treat is in order. I am now going to wander round some of the hotspots here to see if my netbook will connect to BT OpenZone. There do not seem to be hotspots along the river bank, so I shall visit a few shops and coffee bars and take it as a good sign if it does not rain and a bonus if there is a sunny interval.

A long view

18-00 hrs: I still produce graphs based on how I feel each day (according to my own score system) but I have not uploaded any of late. This one is a long view of this year - the single black line is a 28 day moving average.

I had a review with the consultant today and it looks as if Tarceva is doing the trick. I feel a lot better than I did and the Xrays show fewer cancer blobs. Keep on taking the pills!

The wonder-graph illustrates this and also shows the dip in July when Vinorelbine stopped working. I did get very used to the slight upward curve from March and found it hard to cope with the changes in July. So I am now glad to be able to demonstrate an upward curve again, especially as it has a much smoother trajectory such that I feel a little better each day - rather than having big ups and downs as I did before. The rash is very unsightly but - - I don't see it!

Next stop - rehabilitation - less boredom - more cycling and walking - and learning to like being retired.

10-50 hrs: Another review with the consultant at Ipswich hospital on Thursday - encouraging too much introspection. I was very anxious and walked around the hospital (to get an xray and a newspaper) like a zombie. The xray showed slightly less cancer than three weeks ago and the discussion was about further treatment. 

I am now taking Tarceva (Erlotinib). This is a different sort of substance which belongs to a group of cancer drugs known as an epidermal growth factor receptor inhibitors and is supposed to destroy the cancer cells without causing harm to normal cells. It is taken as a tablet every day and is apparently well tolerated - although there is a formidable list of possible side-effects.

No obvious effects or side-effects yet. Yesterday - the gym and a bit of hanging around in coffee bars. Today - the shops and a bit of hanging around at home. And then - less time spent looking inward and more going out - physically and metaphorically; and more pictures to flickr and on the blog.

Chemotherapy details

12-45 hrs: Very confusing - and several of you have asked about it - so I thought I would write it down and hope it lessens confusion.

• Sept to mid Dec 2009 - I was treated with a combination chemo therapy - carboplatin + vinorelbine. By November - the cancer did not show up on the Xrays anymore - although it was still there - just reduced in size and virulence.

• mid Dec to early August 2010- kept under control with vinorelbine, which keeps the cancer cells from growing again. This works for some indeterminate time and then the cancer becomes resistant and starts to spread again - called 'progression'. At this time my general health improved and I generally galivanted about - and got a lot stronger by going to the gym and doing weight training. From March I took this as a capsule once every two weeks - which was a user-friendly way of doing it.

I think it started to resist in late June - but gradually - and in a rather up-and-down manner. It was clear on an Xray in August that it was growing again quite scarily quickly.

• August 2010: I had one dose of a chemo-therapy combination called GemCarbo (Carboplatin + Gemcitabine) to keep further growth at bay (which it did) whilst it was ascertained whether I would be suitable for taking a relatively new substance - Tarceva (Erlotinib).

• From Sept 2nd 2010 - Tarceva (Erlotinib): I take this as a tablet every day. It too only works for a limited period - until the cells become resistant to it - but how limited is not known - it varies from person to person.

Tax and accounts

10-00 hrs: The annual fight with tax and income spreadsheets done and in the post. This will not be the end of it as there are always questions  - - -  but  made easier by nasty wet and cold weather confining me indoors. Hope they don't tax blackberries next.

The side-effects of the chemotherapy have started to show. There is a pattern - of feeling quite good for a few days due to taking anti-sickness and other drugs. Then a plunge - mostly feeling fatigue again. This is very hard to describe - it is a feeling of not being able to do anything - so is very boring - but better than the alternative. Hooray for surfing the web, paying bills and such like mindless activities.

Swallows and - a trip to oncology in Ipswich

19-50 hrs: The best bit about today was taking some pictures of the swallows resident under the roof of the clubhouse balcony - and watching the dinghy racing. A heavy shower and then no wind meant that a lot did not finish and some were towed home.

This morning - a review from the consultant - concluding that the cancer has started to progress again. An appointment made for tomorrow for some different chemo-therapy, this time delivered (as they say) through a cannula in the Day Unit in the hospital. Not nice - but better than the alternative. This is a temporary measure and I will eventually (when some other tests are done) go onto a further treatment with a newer substance. I suspected this but may not have said as much in so many words. It is difficult to know how to keep a balance on the blog - as I say every time I write about anything other than sailing! I have had a good year in many ways and would like the good times to rock on - - and on - -

 - dear friends and followers - I thank you again for reading this and for the support your very presence has given me - I will be in contact - am spending the rest of today preparing my survival gear for tomorrow and then grossing out. xx

A dip in wellbeing

15-30 hrs: I was feeling a bit rough last week. I suspected that the current chemotherapy is ceasing to 'work' - so I fretted and worried, which made it all worse of course. I did get very breathless and tired after I got back from sailing. At the end of the week it all improved and I felt better - 'normal' for how I have felt of late. I had talked it through with the lung cancer specialist nurse in Ipswich on Thursday - and it has also got cooler and rained, so there is less dust and pollen around - and I had a pretty restful weekend.

One result is that I have not kept the blog as up-to-date as I would have liked - and nor have I managed to send sensible to emails to my friends. 

I am probably going to take the boat down-river tomorrow, but the weather forecast here is for rain and I have become a fair-weather sailor (ie wind and no rain sailor). If I don't go - I will try to catch up and pay my bills and live a sensible life - - -

How am I feeling - - -

20-40 hrs:

I have not reported on how my health feels since June 2nd. I had then been feeling very breathless - but had improved a lot after getting  treatment from the GP. I have since then written about all the nice things in life - even work on the U3A website. I have - somewhat typically of my behaviour of late - chosen to ignore the innards when writing here. I did promise myself not to do this - but really old gaffers are nicer and easier to photograph.

I did actually feel quite well for a  while and the  breathlessness reduced after I used a Salbutimol inhaler and took antihistamine. I had a spirometry lung function test in late June - which suggested that I might be reacting to pollen etc and I started on another inhaler. I then rushed around on the river (as reported in earlier blogs), went out again all day Thursday (LookFar does sail well)  and did a lot of web site work - - but got to feel gradually worse - even more breathless, with annoying indigestion. 

And now - - just as bad as the end of last week - - . Have I 'overdone' it in some ghastly way -? And also - I wonder whether, maybe, the effect of the current treatment (vinorelbine) is beginning to wear off. This does not - as you might expect - send me screaming round the bend - who knows why? I have a short review at the hospital on Thursday - so maybe it will make more sense then - but probably not - - .

I don't feel very energetic and intend to keep off the river for afew days.

another quiet week - apart from TV news

18-10- hrs: A whole week since I wrote an entry - not that I did anything of moment last week - new reading glasses - boat sale progressing slowly - interesting geology session at U3A geology group about volcanoes - the usual stuff. But I did stare at the tele for three days and pondered the hung parliament and the likely outcome of con-dem coalition. Also read a few newspapers. I don't know if this was genuine fascination with the process or a reaction to very cold weather (for the time of year) from which I lurked indoors.

The chemo capsules appear to be doing their job - and the side effects, whilst noticable (especially tiredness and slightly upset digestion), are relatively mild and OK if I am careful not to overeat or overdo the activities.

Lorna's plants

16-40 hrs: This is a patch of beach at Prior's Haven, Tynemouth. I used to keep my boat there and planted my household bulbs each year after they flowered. Many are still flowering outside the boat house years later - this is a small patch bravely coming through the sand. Nice to think the beach does not forget. Thanks to Jacks for the picture and to her boat for protecting them.

A review with the consultant this morning - the chemo-therapy seems to be halting the development of the cancer and the xrays are unchanged since last time. Encouraging.

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.

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!