Here I am back at Hathersage after the biopsy yesterday and have had a very pleasant afternoon with daughter Sarah going for a walk in the setting sun and beating her at backgammon. The experience was far from trivial – a cavalcade of human life passed by in the 24 hours I was in hospital.
I have taken a pummelling at the hands of the consultant who did the biopsy (not the smart young Irishman who was my named consultant but who described himself as the "middleman" in the proceedings). "The procedure" consisted of putting me under the CTScan to locate exactly where the mass was, putting a syringe in top centre of my chest, and then the fun. The consultant pushed down hard on my right shoulder, shouted "pump", and assistant sharply "pumped" the syringe to suck some of the "mass" in.
The pain which this sudden sucking out gave rise to was far more horrible than anything experienced in natural childbirths. I hadn't imagined that "the mass" would so solid, and had expected a squidgy slurp into the syringe. The poor nurse had her hand squeezed very hard indeed. Three times he did it but he was then very satisfied with his sample and came over as a jolly good chap and said he'd hope to be able to have a diagnosis by early next week. He thought the only possible contender to a lymphoma was something to do with a thyroid-sounding organ which affects production of white blood cells. I felt it probably sounded a worse prospect than Hodgkin's so I'm not going to give it any thought.
Dear Bob and Maggie,
I was very pleased to get your card.
I follow a Buddhist mindfulness of breathing meditation practice too - although over the past year I've been too whacked to keep it up satisfactorily. Nonetheless it has been much called upon as a resource over the past couple of weeks. And now that I'm not going to work any more and am able to do just what my body tells me to do I'm getting back into a routine (or so I sincerely hope). Although notwithstanding the disapproval which great leaders give to the combination of meditation practice with other mind-changing agents I don't intend to abandon moderate cannabis consumption at this stage in my life!
So I'll be strengthened by knowing that you're wishing me well, happy, and
free from suffering ...
Dear Seb,
Have been called in for diagnosis 11.50 tomorrow so we'll have to postpone
walk. If it's worse than I fear I don't think I'll want to see anybody for
a couple of days. This is a difficult phase. Have very deliberately got by
until
now
by expecting it to be Hodgkins, but I feel that over the next few hours I have
to arrive at a state of mind which will permit me to handle things more deadly
if more deadly it is.
I report to friends and family:
The situation has today become just a tad harder to be flippant about I fear. I have been to the hospital for the diagnosis. It's a "high-grade" cancer and not a lymphoma. It's puzzling them a bit, because the position of the mass is odd for lung cancer but what else could it be? Officially they are referring to it as "carcinoma unknown primary" and have selected the chemotherapy accordingly. I will be treated with Paclitaxel - generic name Taxol I think; and Carboplatin. They are starting next Friday with a 4-hour drip, and then a second bash after three weeks. If all goes well then another couple of doses would usually be the maximum.
Even with the chemotherapy (and possible radiotherapy to follow), my understanding is that it will be fairly remarkable if I'm still alive in 3 years. So, my aim is to be fairly remarkable, nothing more ambitious than that.
It's hard to know how much I'll want to see people and when! Due to risk of sudden death at first chemo session, this week I need to put my affairs in order as top priority. Something long overdue in any case. What I do know is that emails and cards buck me up no end so I hope friends keep 'em flowing to help me through the coming weeks. Headscarfs of a suitably tasteful ethnic variety (what I think used to be called snoods?) genuinely are an excellent present idea, especially if they arrive early for Xmas.
------
I sent out that email to friends and family at 3.30 in the afternoon. After the diagnosis I went straight into my own space. I had gone with John - the father of my children, but not my partner, as the hospital was desperate to label him. I insisted he was my "next of kin" and that was that - only one more syllable than "partner", after all. When we came out, I didn't want to be hugged or touched, and screamed at poor old John when he tried to do so. When I got home I went to bed for a couple of hours and listened to the weepiest music I could think of to draw the tears out - I'm not much of a crying person. I get angry instead in situations where normal people get upset. Kathleen Ferrier I chose - Orpheus and Euridice - what is life without you, death is cruel, death is cold. In the course of singing which at Covent Garden in the 50s, Kathleen's hip broke. She was dying of breast cancer. She leaned on the two members of the chorus on either side of her, and carried on singing. So there we are. I couldn't even let myself have a weep without constructing it as a salutary lesson to myself.
And by 8 in the evening, I had started an initial sort-out to get my affairs in order - locating the important papers and putting them all in one place, thinking about how to do a will with maximum simplicity. Making a will and sorting out pensions and insurance is a tedious grinding chore which just isn't what I want to be thinking about. But the only way to make space where I'm not thinking about it, is to deal with it. It was the doctor saying that I should get my affairs in order as soon as possible, rather than any direct statement about the diagnosis, which made me twig the seriousness of the situation.
Chocs have not the slightest appeal to me any more, nor does alcohol!
Email from old friend Sallie, whose husband died of lung cancer a few years ago at my sort of age: Dear Jos I am sorry - choked as I write this - I know there is nothing I can say that will be any help, and one so wants to help. I found friends' pity and false cheer equally hard to accept - no doubt you will too. It brings it all back for me - I search for things that helped. From others you need love and quiet acceptance of the situation. For yourself - rage a bit if it helps, humour which you have in spades, and taste the sweetness of what is good in life.
In my reply I say:
You're right, the quiet acceptance is exactly what I need from friends and family. It's been so, so hard with my mother - "I feel SURE you haven't got cancer Jocelyn" was the ongoing refrain even at the point when it had been made clear to me before the biopsy that it was 90% certain I did. Completely counter to how I was trying to get my head around it. The rest of the family have succeeded to some extent in making her realise that I must handle it my way and she must support not contradict that, but it's still very hard. She's always said that her greatest fear was one of her children predeceasing her.
Let's hope I'm still in the land of the living and fit enough around springtime to enjoy the Peak District together a little. In any case, emails cheer me up no end. I do like being able to reply at my leisure. I'm finding it much more satisfactory than phone calls.
I am doing my best to minimise the risk of sudden death on Friday. I walked up to the churchyard yesterday to talk to the yew trees and ask them to be my friends (Paclitaxel being derived from them). I brought back some yew bark and went to sleep with it in my hand.
I've not had any thoughts at all of "why me", it seems better to think "why not me". It's made me feel very aware of my privileges in having a comfortable home in peaceful and beautiful countryside, together with free access to health care. I've decided to leave money in my will to a medical aid charity providing aid and support to women facing serious health problems in Iraq or Palestine, and ask friends to make donations in my memory.
My temperature was 101 this morning. I'd noticed when I went up to the churchyard yesterday that I was much more breathless than before. The doc had to come out and give me some antibiotics in case it was an infection - you can't have chemo if you've got an infection. Plus while you're having chemo you're ultra-vulnerable to any infections so all people with sniffles to be barred...
Anyway I've pretty well got the will done, it was handy that I had my mother's one in a Word file so have just amended that.
Email to siblings:
Obviously I'm having low times, as this morning when my
temperature zoomed up and I felt seriously like shit. But overall I'm not feeling
depressed.
Quiet
acceptance is what's needed from oneself and others, not pity and false cheer!
Sarah and Ian have done a fantastic job of coming to grips with this philosophy
thank heavens, but I fear I'm still finding it really hard to gird myself to
talk to mother - I'm dreading that her line now will be "I'm ABSOLUTELY
CERTAIN JOCELYN that you are going to recover from this".
----------------
Telephone calls fill me with trepidation unless they are purely functional. Talking is the most tiring thing for me. I find myself getting stressed and breathless as soon as anybody says anything which in the slightest irritates me or runs counter to the way I'm trying to handle the situation. Apart from children, their father, and a couple of closest friends, the idea of visits is completely daunting.
I try to explain this to a friend who I have given short shrift on the telephone:
It was really unfortunate that you phoned at a time when I answered because I was waiting for the doctor to ring. I just don't want to have to talk to people on the phone or be visited by people "on the hop". Of course there are times when I'm down and times when I'm feeling especially like shit and I absolutely do not want these times to be the basis for circulation of reports to others about how I am etc. I much prefer communicating by email because this gives me the control over what I say and don't say and lets me give an overall picture of how I'm handling things rather than other people inaccurately reporting on the impression of a passing moment.
Thank heavens a) that I got heavily into Buddhist poetry and philosophy when a teenager and b) that I'm not desperate to get back to work. Also it just wasn't a shock, I've known all year that I'm seriously unwell but failed to communicate this to the docs for whatever reason.
Email from youngest sister: oldest sister had not told Mother quite how serious it was because she "thought that she would wait to see if the tumour responds to chemotherapy and heaven knows it is serious enough anyway without spelling out every letter". However, she says: "now Mother has spoken to Ian I had the distinct impression that he had had made things a bit clearer to her. She knows that, to use her words, false optimism is the last thing you want so I think you could, when you are feeling mentally strong, pick up the phone. Of course whenever she comes out with any of these annoying statements you need to remember that she is comforting herself as much, and the truth is, probably more than, you."
To which I reply: Yes, I know that mother is comforting herself with these annoying statements and can just about handle it if I not she picks the time for talking. This is going to become increasingly true. And there is no time when I can cope with talking to her if she has been fed falsehoods about the situation which of course will play into her coming out with absurdities which drive me up the wall. It's too much to ask of me that I should have to play let's pretend games. So, it's a relief that she's now being given a rather more accurate account of the situation.
Email from son Ian: I'm finding it quite hard to guess what you must be thinking about, or how you're actually feeling. At this point I just don't feel able to empathise.
I say to him: having got heavily into Buddhist poetry and philosophy in my teens has a lot to do with what my feelings are faced with this situation. My collection is all on the shelves by my bed so have a bit of a read sometime. I know you can sympathise even if not empathise, and that's good. Sympathy isn't the same as pity though, as I was thinking this morning. Pity definitely not the right medicine. Loads of love from your old not-to-be-pitied mum.
And Ian says: First question that comes into my head: Are you sure you've had time to know you're not shocked? To be honest, I don't really understand what would be pity and what wouldn't. I don't think I would behave like that, but if I do you must tell me and remind me that I told you to tell me - I'm sure you know that for the people who love you this will be very hard and being imperfect (Sometimes), I'm sure that I will manage to do the wrong thing at times.
And I say: Yes, I do know I'm not shocked. The doctor actually commented on this unsolicited after the CTScan results, as you would recollect dear boy if you had read my long letter to docs thoroughly. But of course it's only natural that you are shocked. I have to understand that too. But great praise is coming from Orkneys [where my mother and two sisters live] as to how wonderful you and Sarah are being.
Ian: Perhaps I don't understand Shock... But the difference when you have
a generally curable illness versus a generally incurable one must be huge,
especially if you had made a presumption about what you had.
Me: I realised before the diagnosis that I had to prepare myself for something even worse than feared ... I feel that I've achieved so much in my life simply by having such lovely children as you and Sarah, I feel "why not me" as opposed to "why me", and what's the point in wallowing in misery and depression when time is so precious now.
Chemotherapy now not happening till Friday 17th - I'm quite pleased to have the extra week to prepare. This was a decision on the part of the nurses in the chemo daycare suite, who phoned to ask if the change was OK by me. If I have a chemo on 10th then the next one will be due New Years Eve and they seemed to have a strong desire to minimise number of patients on that day.
Chest infection this week has left me pretty breathless - well I hope it's the infection and not the "mass" taking a great leap forward in its dimensions. One of the reasons why email is such a good thing, talking can be very tiring and also the breathlessness can give the listener the impression that you're in an even more awful state than you actually feel!
There are all sorts of interesting issues about why I so signally failed in visits made over the past year to communicate effectively to the docs that I really was far from well - not to be blamed on individuals though. When time is precious you don't want to waste it on being angry. It's bringing out the Buddhist in me with a vengeance, this experience. Which is an interesting experience, that has to be said. The children are being fantastic. To me what's helpful to understand is that a quiet acceptance that I'm likely to be dead in 3 years, doesn't contradict a positive spirit and a willingness to do battle.
Midday - I can't get enough of emails like this one from a work friend:
"I have just heard the news about your illness through the internal email system.
I
am really
sorry
to
hear this,
but from
your comments,
which
were included in the email, it sounds like you are dealing with the situation
in your usual fearless and positive manner. I imagine that this, as much as
any therapy you receive, will be the right medicine. My mother had lung cancer
and went into remission for 10 years. The doctors did not think she would live
more than a few months, but I guess they underestimated
the therapeutic value of a positive approach to things. I know you have that
same positive no-nonsense outlook so my inclination is to take a positive view
of the situation."
Teatime: Get a good chuckle from chum Chris who writes: "I'll maintain a positive image of you and aim some "melt off" ideas in the direction of this cowardly carcinoma that dares not speak its name." I like the idea of having a "cowardly" carcinoma.
Evening: I was really enjoying myself deciding what music I'd like at a Jos memorial service and imagining Jerusalem being sung with great gusto and passion. Thank heavens that for good old Blake Jerusalem was a socialist utopia. Then mother rang. It was unbearable. I had been in a world which I was getting great glee from. I email my oldest sister to tell her that mother just mustn't ring me - nor must any other members of the family. It has to be email. Oldest sister replies to tell me that mother has "decided to get her own emailing apparatus" - all my irritation at her melts into admiration at what she's prepared to take on at the age of 93.
Email from a friend on hearing the news: "I can't believe this. How could this be? I need to do some homework on all these drugs you've mentioned but is there any mileage in getting a further evaluation?" To which I reply: I think I have to go with what the docs say at this point. Questions as to whether somewhere out in the world there might be something better, I don't have the luxury of enough time to ask. Doubts about whether the treatment is right aren't going to help my state of mind. (Which is actually pretty good...)
Haven't been sleeping. Yesterday night really was awful. I thought I was going to die. Doctor from the out-of-hours service finally called out in the small hours of the morning, and was most concerned that no professional support had come my way of its own accord Monday or Tuesday, especially since there was the intervening weekend for me to get through since the diagnosis. She was very comforting but had no sleeping drugs with her apart from Valium. Which I knew from the past was not any good. A "perverse reaction" they call it - the drug makes me feel more stressed and anxious instead of calm and tranquil.
So this morning, after a totally sleepless night, I had a mega-scream at John and then a desperate wail on the telephone at the doctor's receptionist. After that things started to get better. I realised that I was actually much less breathless than hitherto, a great relief as it suggested breathlessness down to chest infection rather than a great leap forward by tumorous beasty. Then a doctor came from my local surgery - I was pleased that it was somebody who's older and wiser than me rather than vice versa. He may have been a conservative, a rabid Christian, a member of the Countryside Alliance. Whatever he was, he connected at the level I needed someone to connect with me. He gave me a sense of confidence that I could cope. And a prescription for Zopiclone, a new type of sleeping pill since last I had tried what the doctors had to offer 15 years ago.
Last night made me realise that John can't and mustn't do any nursing in future. He just doesn't understand what he needs to do and too many bits of baggage from our past are still hanging in there. I'm safer and calmer nursing myself and being on my own. There is a silver lining to this because John is doing plenty already as dogsbody and I would hate him to neglect his job. So the fact that he's incapable of doing one aspect of support is a good thing because it puts less demands on him. I just don't want him to be my main support mainstay, but I think that's how he'd like to be thought of. I'm pleased to have got this out into the open sooner rather than later. I need to do all I can to get emotional baggage out of the way so I'm not constantly tripping over it, and nor are the children. The last thing I want for them is for me to die screaming like a banshee at their dearly-loved dad.
Evening: I think I have thrush on my tongue. It has white stuff on it and sort of fissures at the end. It was the dreadful dryness in my mouth which was the last straw yesterday night, and I was so low I didn't have the energy to drink. The doctor who came out in the night should probably have looked in my mouth, but she didn't. Thrush didn't occur to me until I looked at my tongue - have never had it in my mouth before, although I know perfectly well that this is a common side-effect of antibiotics. I'll keep yoghurt on it overnight. Great relief to have the house to myself tonight.
Morning: Much better - not really breathless at all now. Thrush is responding very well indeed to popping a spoonful of Rachel's organic Greek-style yoghurt into my mouth every 5 mins and very pleasant that is too. You can feel a quite dramatic fizzing when yoghurt hits thrush.
I've had an apppointment letter for a "Nuclear Medicine Scan" at the hospital on Thursday 16th - i.e. the day before my first chemo session is due, and a day when I will therefore also be having blood tests etc. in preparation for that. I think this is silly. I want to go into chemo at maximum possible fitness level and having a lengthy procedure in addition to the essential pre-chemo tests the day before doesn't seem the best way to achieve this. Also, I'm unclear as to why this test is required at this stage. I assume this "nuclear medicine scan" is wanted to see whether the carcinoma has crept into my bones. But surely I would be feeling it in my bones if this had happened? And how do the results of the test relate to the programme of treatment to be undergone over the coming two or three months? If it has no bearing, then is there any urgency about it?
Rang the surgery to ask if a GP could discuss this with me - had a good phone conversation which supported my view that it wasn't unreasonable to cancel the appointment. So I did. This was a perfectly fine bit of GP service, but unfortunately no info has yet arrived at my medical centre from the hospital, and added to that I still don't have any settled GP who I'm seeing over this. Which makes it hard to develop the kind of relationship with a doctor which I feel I need right now.
Have started thinking about the diagnosis a bit further ... I don't feel as if I've got a cancer inside my lungs, the consultant acknowledged the uncertainty that this was a lung cancer, and I got the impression that the GP who came to visit me yesterday had some doubts. I'm wondering whether it's the case that because it had to be classified somewhere for administrative reasons, it's been put down as lung cancer? At the diagnosis appointment, the nurse was filling in forms for me to sign to claim a Disability Living Allowance which is non-means tested and which she said I was automatically entitled to. Would I be getting this if say I had a diagnosis of Hodgkins? And is the reason why the specialist answered "Yes" to my question "Would it be slightly remarkable if I was still alive in 3 years?", because I've been put in the lung cancer compartment?
Email to friend: Chest infection seems to be under control, but in general will have to keep infection risk at absolute minimum over coming months - one reason why emails a better way of keeping in touch than visits. Suits me fine that chemo has been delayed a week and the second session consequently won't fall on 31st December. Specially because at a new years eve party in Heeley Community Centre about 20 years ago a perfectly healthy-seeming chap dropped down dead under my very nose. So sudden death has inevitably been an association with New Years Eve since then!
Evening: have been doing some Internet sleuthing on Disability Living Allowance. It's only now that I realise that the £100 p.w. they're giving me (while I'm still on full pay from work as well) is called a Terminal Living Allowance. I have been classified as terminally ill, and "Terminally ill" is defined in section 66(2) of the Social Security Contributions and Benefits Act 1992 as follows: "a person is “terminally ill” at any time if at that time he suffers from a progressive disease and his death in consequence of that disease can reasonably be expected within 6 months.”
This jolts me somewhat. The doc didn't use the word "terminal" at the diagnosis. All the same I should have twigged at the time, when taken by nursy into pretty wallpapered room with teamaker and when she did the form-filling for me.
I think it’s generally the case with lung cancers that death can “reasonably
be expected” within 6 months of diagnosis. However, my carcinoma is not
necessarily lung cancer. I'm left unclear whether it's the case that if it's
not lung cancer, death can still “reasonably be expected” within
6 months simply because of the size of the mass and the risk of sudden
death (e.g. heart ceases
to function) as a result?
My hope now is that the mass isn't yet big enough to cause a sudden death before the chemo has a chance to clobber it. I've begun to realise that my aspirations after diagnosis to be "slightly remarkable" and live 3 years are likely to need scaling down significantly.
But ... I have not the slightest intention of giving up hope until my body tells me the end is nigh, which it certainly isn't doing at the moment. It's stupid how fit I am! The nice thing about this "mass" is that it's sitting outside any organ and perhaps that could mean it will respond very well to chemo. As long as it doesn't grow too big first and make my heart give out. But that would be much pleasanter than slow lingering and painful.
Email to oldest sister: I think the point is that people should be prepared for the fact that sudden death is a real possibility. Woe is me. From my perspective being prepared for it means very boringly getting various administrative things done now rather than indulgently enjoying making plans for memorial services.
If sudden death is thankfully avoided I'll retire on ill health grounds after 6 months sick, and this is a definite silver lining in the cloud - the deal is pretty good. And so even while the sun shines I feel I should be boringly going through all the pensions papers etc. Actually I won't, I'll go for a walk, and if sudden death comes to me amidst the hills and the trees it will have a certain lyrical quality at any rate!
It's grand spending loads of time with the excellent children. What a relief to allow myself to be an invalid after a year of knowing I was seriously ill and not managing to communicate it to doc in such a way that he believed me rather than (no doubt) regarding me as a menopausal madcap. Let's hope the "mass" takes fright and runs after a few blasts of good old yew.
I have encountered a possible ray of hope with regard to this being an “unknown
primary” cancer. http://www.cancerhelp.org.uk/help/default.asp?page=4731#find* "There
are a number of reasons why the primary cancer cannot be found. It may be that … Your
immune system has successfully attacked the original primary cancer and it
has disappeared altogether, while the secondary cancers are thriving
- this is not common, but it can happen."
Rays of hope are most welcome, so I’ll go for believing that one and that as the mass is outside any organs there’s a good chance that it will respond well to chemotherapy. It should be apparent whether or not this theory has any mileage by end January – i.e. after first two bouts of chemo will the mass have receded substantially?
My youngest sister writes: Mother is going to be absolutely desperate to see you. Would it help you if I tried to organise that after the second bout of chemo. I could meet her off a plane in Manchester, find a B & B in or around Hathersage and generally shield you from her when necessary and comfort her as required?
The prospect just isn't something I can cope with. I write back to her with considerable crossness: I absolutely will not be driven by mother's wishes to see me. I may not have any desire to be seen. If my family hasn't got the vision and imagination to see and hear me through my emails I am deeply disappointed in you all.... I am asking you to encourage mother not to be "absolutely desperate" to see me and to point out to her that the me who I am is there waiting to be seen and heard in my emails. I don't see what the hang-up is about seeing people in the flesh.
Am still having problems with what my mother does and doesn't know. I write to my oldest sister: Have you yet given mother a full account of what's happening? Or shall I write to her? I'm getting really pissed off with this pussyfooting. Once she has fully taken it in I would expect it to be possible for me to talk to her meaningfully on the telephone without this horrendous mismatch of how the situation is perceived. You say I underestimate her robustness but that's exactly what you're doing by not giving it to her straight from me as you could and I believe should have done.
Chum Sarah asks: If this is secondary cancer, do you think it's possible that you might have fought off primary cervical cancer? I remember you had a biopsy at some stage...
To which I reply: Yes, plus laser and freezing treatment. In my youth I went to a fortune teller in Brighton who was very serious. She told me to watch for my womb and ovaries. Who knows what battles may or may not be currently in progress down below? But my main concern for the present is to join forces with these jolly poisons which will hopefully melt the gelatinous masses which are squidging and squashing around within me.
Sarah also says: your faith in me as an unbothersome visitor made me feel all emotional. Partly because I know that, if the positions were reversed, I would feel the same about you. It's a strange level of connection which doesn't seem (to me) necessarily related to depth of friendship, political kindredspiritedness, or anything else much, but somehow you recognise it when you see it....
Feeling distinctly scared that chemo could result in sudden death, but at the same time my spirits are OK. I am ready to meet my maker if needs be and also ready for battle. I'm fine. Remarkably so.
I have to take a massive dose of steroids tonight in preparation for the chemo and am told it's most unlikely I'll be able to sleep.
A placement student in my department writes: "Dear Mrs Kingston, greetings. I recently received a message explaining your case. God willing, you are in good health. God willing, I hope you recover fully. Please let us know if there is anything that we can do. Do you find that illnesses are an eye opener to life and the search for answers to the fundamental questions about the Creator and mankind? Take care God willing."
Asks a forthright question, doesn't he? I reply: I feel that on the one hand I have to be ready to meet my maker, yet on the other hand be strong and optimistic and aggressively alive, and it's a difficult one being in both places at the same time. I read a lot of Buddhist philosophy and poetry as a teenager and although I wouldn't call myself a Buddhist (or anything except perhaps a humanist) I'm finding that it's a world view which gives me a great deal of strength.
