Dear everybody,
Quick summary first: the mass in my chest cavity has grown from 8.5 cm at its widest point in early March after chemo, to 9.8 cm at the CT scan I had on 20th July. Scan still showing nothing else untoward going on anywhere else. I'm still feeling fit, pain isn't a major problem, sticking happily to my Routine, and have no difficulties with 5-mile walks incl. steep climbs. The consultant doesn't think this rate of growth is any reason to alter her prognosis from early June, i.e.there's a very good possibility that I'll have still have a good quality of life (altho' definitely not a "normal" life!) for another year or more, but only 1% chance that I'll still be alive in 5 years time.
Hospital appointments have as always provided the only deviation from my Routine, and a source of tales to tell. No lift being easily available, I decided to see if I could use the hospital Medicar service to take me to and from the hospital for my scan. My appointment was at 3.30. I was told I would need to be ready for picking up at 12.30, and that there could be an equivalent wait after the appointment. In that case, I said, I would need to be able to lie down while waiting, as the amount of sitting involved in the 10-mile car journey would be as much as I could do. Goodness me, talk about Oliver Twist asking for more. Which of course made me exasperated. As a result of which the Medicar organiser took it upon herself to suggest to me that my mental state was such that they should consider postponing Wednesday's scan!! Anyway, since she insisted that only my consultant could authorise me lying down while waiting, I emailed her, pointing out that lying on the floor would do me fine but it had caused great consternation amongst the nurses on a previous occasion when I did this. To which she replied: "If all else fails ask them to bleep me and I'll come and find you a suitable bit of floor myself".
This wasn't necessary in the event. We decided it made more sense to come in by bus than Medicar, (buses and trains are actually more comfortable for me than cars and make me feel a more politically correct person). It was a sunny day, and we had a pleasant saunter through the Botanical Gardens on our way from the bus stop. There was only a few minutes wait for the scan, and then they let me lie down in the fortuitously empty ultrasound room for the statutory 10 mins they keep you there to check you're OK afterwards. Then I went and had a delightful rest on the grass in the sun in Weston Park before proceeding homewards. But it could have been an issue if weather had been naff - I'd thought in that event I would be able to lie on a bench in the Mappin Art Gallery and contemplate art - but it's been closed for restoration and is not re-opening for a few million years yet. I did need more than 10 minutes lie-down before I was up to journey back. Which in itself was very pleasant, returning on the 5.14 train and hence bumping into old commuting chums. But I'm sure this isn't the last we'll hear of the "please can I lie down" story.
I asked consultant to let me know by email if she had the scan results in advance of the appointment so I could reflect upon them before seeing her. This she did, and I was very glad to have a few days to digest the information. My first reactions were glib - thank heavens it hasn't diminished, perhaps that would have jeopardised my ill-health retirement, having cancer has been much more fun than working at Sheffield Hallam University... The next day was occupied by thoughts about how good it was that even though the mass is growing I'm still breathing comfortably and not losing fitness - how well my body is managing to accommodate the mass. I decided to see it as a challenge to develop an alternative to breathlessness through learning techniques of breathing less. I've read somewhere that Buddhist monks only breathe 4 times a minute or something. I've already been learning to breathe more and more lightly.
Then the third day my mind started dwelling on the fact that an increase in size from 8.5 to 9.8 cm was really quite substantial. A cube with 9.8 cm sides has a volume 50% larger than a cube with 8.5 cm sides. I got cross with myself in the course of these calculations because I have a habit of doing such things as long multiplication on a scrap of paper to keep my brain on the ball, but I found myself getting confused on the decimal points. And then I rapidly plummeted into seriously miserable mode, stormed out of the house in psychodramatic tears, caused poor Sarah such grief that she texted brother Ian along the lines of Help - Jos going crazy. Having got the self-indulgent weepies out of myself and communed with the yew trees in the churchyard, and the oak tree near Leadmill Bridge, and with Highlow, I felt much better, clear about the questions I wanted to ask the doctor the next day, and ready to roll.
So, apppointment with specialist was really very satisfactory, much more useful than it would have been if I'd been told scan results on the spot and reacted in ititial glib joky way. She was very determined that I shouldn't see the rate of growth as frighteningly large, and there certainly isn't any benefit to me in viewing it with grim foreboding. I'd told her by email before the appointment that I would like to discuss my preoccupation with the possibility of sudden death of a distressing-to-witness variety as a result of pressure of the mass on vital organs. (This was what initially after diagnosis I had perceived as a near-certain scenario, but looking back I was reading this into what was being said about such things as vena cava being diverted - I think because it was the only scenario that seemed conceivable to me if I was to die in the timescale at that stage being indicated!) Anyway, she has now convinced me that this isn't particularly likely, and even though I don't have any desire for a slow lingering and painful demise, I'm pleased that this is the case at this point in time.
I told the consultant that I didn't see myself as "fighting" the cancer - I have no reason to believe they would tell me that there's no hope of curing it if that wasn't the case. "Fighting" talk seemed appropriate in the context of chemotherapy, but now it rankles with me when people tell me how well I'm "fighting" it. I don't have any desire to waste my energies in fighting a losing battle. I'm living with it, accommodating it, and the challenge is to do that as well as I can for as long as I can. Consultant told me that she thought this was a very sensible approach, that I was doing it very well, and said to Sarah "I expect you're proud of your mum". With hindsight I kick myself that I didn't butt in to say how proud I was of Sarah.
So that's hospitals for another three months unless something develops in the interim. The ill-health retirement saga goes on. A battle I feel I ought to be able to win is to push for fast-tracking of applications from cut-and-dried terminals like myself. It was 5 weeks after the Occ Health doc visited me before I was sent a consent form for him to approach my doctors - a form which I could have filled in on the spot when he visited. Human Resources either aren't aware that it's my entitlement to see my medical report before it goes to the Pensions Authority, or have such a view of "Human Resources" as interchangeable lumps of metal, that they don't consider it appropriate to acknowledge that anybody has any entitlements to anything. Anyway they are bullshitting me, pulling the wool over my eyes, exasperating me, etc etc. I'm in the market for Human Resources horror stories - it strikes me as worthy of being considered a "topic" in my scheme of things. Praise for Human Resources can of course also be offered if anybody is able to balance the picture a little - it really is remarkable that I have never heard a good word for Human Resources from anybody anywhere.
On the topic of topics, by the time I send this out I will have uploaded some of my "Terminal Thoughts" onto my website - www.joskingston.org
I decided to put some Topics online first, before I upload the Diary section which will include all the progress reports I've sent out and more stuff edited from my mailbox. It made sense to do it this way round to avoid repetition between the Diary and the Topics. I hope the Diary will be online by end August. Then I'll do such embellishments as add pictures of Highlow etc etc. The topics now online include such things as "Faith and the Lack of It", "Enjoyment of Breathing, Handling pain, and Pragmatic Meditation", "A Macmillan Nurse experience".
Because it's free and easy to set up, me and Ian (OK mother, Ian and I) decided we might as well have a "Terminal Thoughts discussion forum", which you can contribute to from the link on the Terminal Thoughts homepage. Probably about 99.9% of discussion forums (OK mother, fora) are damp squibs but why not give it a whirl before assuming that this will apply...
I think that's enough for one progress report especially as you have this
extra reading matter available online! Please report any problems accessing
Web pages or discussion forum. (This hasn't been tested at all thoroughly.)
August's Parish Magazine drops through the door, and contains a letter from Sir Hugh Sykes, the new owner of Brookfield Manor. Youth have been building tree houses in his grounds, where syringes and needles have been found. Aha! A letter opportunity for Hopeful of Hathersage! Brookfield Manor, used as a management training centre for many years, has a splendid drive running through magnificent parkland. Traditionally, villagers have walked freelyalong Brookfield Manor drive - until the end of 2003, when the previous owner erected electronic security gates at the entrance. This caused much unhappiness in the village, as the result of which the Parish Council took up the issue, and during summer 2004, evidence was collected to make the case that the drive should be treated as a right of way. Since then, nothing has happened. So, I pen the following to Sir Hugh:
Dear Sir Hugh,
I have read your letter in the Parish Magazine concerning tree houses in the Brookfield Manor grounds.
This is certainly a development which is undesirable for everybody. Many villagers who I have encountered on the footpath on the opposite side of the brook have commented on it. However, it seems to have been widely assumed, including by myself, that this tree-house building, and littering of the Hood Brook with rubbish, was another Brookfield manor training activity, along with clay-pigeon shooting and the threatened quad bike riding. There was also a long period in recent years when old furniture etc. from the house was left dumped adjacent to the footpath at the back of the Manor. Unfortunately these activities have not given the impression that Brookfield Manor has any great concern for environmental issues, or for the quiet enjoyment of the countryside.
The act of closing the drive to villagers in early 2004 has added greatly to the sense of antipathy which is felt locally towards Brookfield Manor. As assistant to the Parish Council Footpaths Officer, I was responsible for collating the depositions which were collected from villagers regarding this closure. I enclose a copy of the summary of evidence, and do urge you please to read it if you haven't already done so. It gives a strong indication of just how much this access has been appreciated by villagers.
In particular, this was a very popular evening walk for villagers. It is precisely at this time of day that the kind of activities which your letter describes are likely to take place. While the drive was open to local residents, there was no trouble of this kind - it seems reasonable to suggest that the presence of locals, who were likely to know the culprits, would act as a deterrent to this type of undesirable activity. The footpath on the other side of the brook is unattractive, has a closed-in feeling, and a difficult surface for the less-than-agile. It is therefore not a place which attracts villagers for evening walks. Added to which, the negative feelings which are now present towards Brookfield Manor make it considerably less likely that villagers will take initiatives to report what happens in your grounds.
I do hope that you will give this matter some serious and philanthropic reflection. My personal feeling is that access to the drive is of importance only to villagers, and is irrelevant to hikers. There would be real joy in the village if access to the drive was permitted once again. It would be particularly splendid if you were to permit villagers to walk along the drive as far as the fence and gate near the end. This is a wonderful stretch of good flat surface for the elderly and less-than-agile, and also for young children. The superb views in both direction, and the sense of openness which the parkland gives, are truly uplifting.
I write with some feeling about this, as I was diagnosed last December with a terminal cancer and must expect over the coming months that my walking will become increasingly restricted. Once footpaths are no longer accessible to me, few things would give me greater happiness than to have access to your drive!
Yours sincerely,
-----
I feel quite proud of this letter. I don't have any compunctions at all about "milking" my terminal state - what I'm saying is the truth!
It's now seven weeks since the ill-health retirement visit from the occupational health doctor, and still he hasn't yet contacted either my GP or my consultant for a report. I have had enough of this. I remember that a friend had suggested that in my case no more should be needed than a report direct from my consultant. So I email my pension fund: Does your Dr in fact need the added layer of a report from Occ Health doctor in a cut-and-dried terminal case such as mine, or would a report direct from my consultant to your doctor in fact be all that is needed?
Within a couple of hours the Pensions Fund replies "yes" to my query. I email my consultant, who says she'll get a report sent off straight away.
Oh joyful contrast with the workings of Human Resources! It gives me great pleasure to tell them that they are not needed.
Surprise, surprise. Human Resources are still plying me with irrationally-worded forms to sign. I will save the story for my next Progress report.
I have asked consultant for a copy of her report to the Pensions Fund, and she has warned me that this will be "deliberately bleak". It says: "The average survival for a patient with a carcinoma of unknown primary would be less than one year. Whilst I think she is going to do better than average I think it highly unlikely that she will be alive longer than two years after her initial diagnosis." (i.e. December 2006)
I have shared the cause of my fears of sudden and bloody death with my consultant. My first vivid childhood memory is of being taken by my father to visit a parishioner who had just been widowed. I looked up at the ceiling of the cottage and there was a big pool of blood. I was 2. "Daddy daddy there's a big pool of blood on the ceiling!", and off goes the poor old lady into a vivid description of what I now gather from consultant was an "exsanguinating haemoptysis" - no doubt I won't be able to resist "Googling" this at some point!
Just about all my brainwork time has been consumed by the ill-health retirement saga, but it now seems to be reaching its conclusion with some surprisingly excellent results. Am very pleased by how seriously the pensions people are taking it, moving straight into initiatives to make sure terminals aren't subjected to such treatment in future. Plus I have the satisfaction of making my union secretary acknowledge that he'd got it wrong over entitlements to see medical reports.
Today, I spent the morning sorting papers - and decided this is something I can only bear in very small doses. The weather is relentlessly miserable and the time is drawing near (4 pm I think) when I will be forced to venture out into it. I will feel on a downward slope if I miss a day when I haven't yet done so. I have some very good new waterproof trousers but this kind of rain is the worst. Haven't got a walking companion today either and going out on my own in shit weather I'm not entirely happy about but I think it's probably better than not going out. I go.
Am working hard at finishing editing my diary to put it online and feel v. constrained by how limited the amount of brainwork of any kind I can do in a day is.
Received a very friendly letter last week from Sir Hugh Sykes: "Ruby and I would very much like to find a way so that you and other responsible residents are able to enjoy walking on our drive again... If you can help to resolve this situation I am sure everyone would be most grateful." So, I have entered into robust email discussion with the Chairman of the Parish Council.
I arrange for two work chums to come out for lunch and a walk - for some reason, I feel I must know all the current goings-on for one "last take" before I get my head completely out of it.
Weather is beautiful again now, but there have been some very miserable spells. However, not once have I been deterred from my afternoon walk, or made it shorter than at very least 3 miles. I do get bad back pains setting in after more than about 5 miles though - I think it's the weight of my arms which does it!! Anyway, they ease off fairly quickly when I get home. Pains in neck more of a problem and I'm beginning to realise that I can and must psyche myself up to the possibility that radiotherapy will be called for at some point to address this.
I email my consultant on this theme.
Very pleased to hear from Roy that he's going to take the option open to him of retiring at 60 - this December! Takes a bit of adjusting to, entering the age bracket when your friends are in their 60s...
My head is going very strongly into memories mode, most especially of the days when I was 17, a schoolgirl in Cambridge, and high on life. Which is how I feel again now for a remarkable amount of the time. It's fun to be able to rebuild memories of that period with my old friend Pete, and very interesting the ways our recollections do and don't connect, i.e. it's a negotiating process to arrive at versions which we both accept!
I go fully into memorabilia mode, and reach down my old personal folders which contain trinkets from late 60s and early 70s. Am greatly interested in the contrast between me in 1969 and me c. 1973. Contrary to how it appears, my consumption of drugs was much higher between 1966 and 69 than it was 1970 to 73. I think the difference is that I had stopped being high on life between the two.
I think this nostalging has set me on the path to the next chunk of writing I fancy doing - had been worrying that I might feel that was "it" somehow when I'd finished editing my diary up to the present, so I'm pleased to have another little project sparking in my head.
Amongst my memorabilia were bits related to old friend Pete - photos and a few letters from 1966-7. I ask him whether he'd like them returned to sender rather than being put on a skip on my demise, and he says yes. He was very pleased indeed to have a rather fetching photo of himself which he'd never seen before! I enjoyed putting it all in an envelope and posting it off, as a kind of symbolic leave-taking.
Nostalging on the years 1965-9 continues apace, with the occasional diversion into swapping points with the Parish Council on the topic of Brookfield Manor.
