I haven’t posted for such a long time. Re-reading the last post I made I can feel the trepidation and anxiety I was experiencing at that time. In fact I was told to go away for a while – ‘complete remission’. The radiologists wrote it, the oncologist conveyed it. Six months later … Same process – same result – ‘No evidence of disease’. Sweet words. Wasn’t supposed to be like this …..
Not sure if I ever posted about the psychological effects of a secondary cancer diagnosis. It just doesn’t go away.
Not sure what I want to write about (again) …. but feel an urge to commit words to paper (or pixels to a screen). Have hung up the wetsuit for a while and am enjoying just getting on with life on dry land. Traveling at present in Vietnam. Learned today about how the Vietnam Cong defeated the might of the US and realising that the bigger the challenge the deeper one has to (and often does) dig. Spent a wonderful day yesterday out on the Mekong delta (I think Apocalype Now was on the Mekong). Very uplifting and so peaceful, but also so dangerous. Calm waters.
Have recently been advised by a psycho-oncologist to keep writing – To write about the trauma of diagnosis and to write about advice to help others through the process, the rapids etc … I think that is good advice and intend to post along those lines in the near future.
For now I am enjoying a calm stretch ..
Immediate advice to anyone in the same position as myself (Indeed to everybody and don’t wait for a cancer diagnosis)
– Drink the best wine first – Have posted that before – shows my priorities …
– Travel …
– Travel far ….
– Travel wild ….
Watching from the River bank
I had alluded to certain facts about not noticing others in the same position as one self (on this same boat so to speak) while rowing thru’ some rapids. I have been out of my canoe for some months – walking along the river bank but keeping canoe close by – Always ready to get in and row again but watching from the river – Seeing close friends going thru’ a really tough section of rapids with very little hope of coming thru the other side in one scenario that tortures one. My mind can’t refrain from thinking that will be me sooner or later – It is a horrific thing to witness even from a distance. Hoping I don’t need to don the wetsuit again just yet.
There are periods when the rest may be over and it is one’s duty or ones time to row, row row that boat. I’m in such a period right now. Snap Shot taken and being analysed. Results probably ready but not yet received. They will be soon. They could well tell me go away we’ll have a look at you again in 5/6 months. They may tell me to put on the wetsuit. They may even put me on a different river.
I can hear any of those scenarios but at least the uncertainty will abate for a while
Wish me well my friends
My advice to all whether on this ride or another
Cook something good everyday
Get a bit of physical activity under your belt daily
Drink the best wine first
Posted by thomas monks at 22:08
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I don’t know what to name this post yet. I’m not even sure what I want to write about. Setting out to write for the sake of writing, just to see what comes out.
About three weeks ago I went through the by now routine process. How can having your body passed back and forth in a scanner and then waiting the few days for results become routine. Scan and then consultation with oncologist aka god (or goddess in my case). Big thumbs up from her (literally). On a consultation day I wait in a small reception area to be seen. I don’t have to wait very long. The oncologist comes out of her office, I can hear her coming, I hear my name,”Tom”. What am I going to be told? As soon as we make eye contact she gives me a big thumbs up. No words necessary, a simple gesture speaks volumes. I am really lucky to have such an understanding and compassionate woman looking afer me. I think that is probably the most important thing when on a metastatic cancer journey. To be under the care of an oncologist who understands the psychology of cancer and can communicate so well. Giving a thumbs up was SO the right thing to do at that moment. We can then sit and discuss the details. She has had to give me bad news at other times in the past and she is just as professional and compassionate on those occasions. She doesn’t give a thumbs down but she does get right to the point.
This time it was good news. No more fast flowing rapids for a while at least but I am still on the river. I am on this river until it flows into the Great ocean.
It is traumatic being thrown into the river, being told you have cancer. It is doubly traumatic being told it can’t be cured. It can be controlled but not cured. I have never written that down before. Why now? I had a session with a psycho-oncologist today. Another understanding and compassionate woman I must add. I told her things about how I feel sometimes which I would never have dared express openly before. Why now? I am into my fifth year in the river now. Why does it not get any easier? In fact at the moment I feel as though it is getting harder. Why? Why? Why? I going to have to figure that out. My understanding of the nature of things is that the more you do them the easier they become. Well it seems cancer doesn’t play by the rules.
There is no treatment at the moment. I would have thought that I could relax, needn’t have to worry about ‘rapids’ for now. This will be a hopefully long but at least calm stretch. But cancer is a fucker, an absolute ruthless fucker. It fucks with your body, it fucks with your mind and it fucks with your emotions. Cancer doesn’t give a fuck. If it gets a good hold i.e. goes metastatic it will fuck you over and over and come back and fuck you again.
I’m sorry for that last paragraph but you know that is probably what I needed to write about this evening. That is what came out and NEEDED to come out. I am not delusional, I am not a ‘denier’ but I never really confronted cancer to date and never told it what I thought. Well cancer, you are a real fucker, you have certainly fucked me up well and proper. You are really starting to get on my nerves . You have fucked other people I know and love also. So I am acknowledging it ……. Cancer fucks. There is the title for this post. Cancer fucks.
Paddling a canoe on a physical river is a strenuous exercise. While it can be tiring and even exhausting when the current is strong it is also an activity that can harden the body. By exercising and using one’s muscles the body is (or at least can be) strengthened. The body needs physical activity, physical exercise. Keep it as hard as possible.
In another sense and using a canoe trip as an analogy for a cancer journey (cancer should always be spelt with a small c), cancer can ‘harden’ one also. I did a post once where I mentionned my Taichi teacher telling me to think of what I would learn from the trip. That was back at the very begining. Now I am not really one for looking at such experiences as learning opportunities. I’d rather stay stupid than endure such a harrowing experience. But I do remember thinking (not expressing) and getting a sense that going on this canoe trip was going to harden me. Maybe I needed to be hardened. Regardless on reflection this river journey has hardened me.
Emotions still come flooding out randomly. Emotions are probably even more intensly felt. But it has become possible to face things and not be afraid. If something needs to be changed then change it. Let the fucking light in.
‘There is a crack, A crack in everything, That’s how the Light gets in’ – Leonard Cohen
Careful though, the change can be painful or not as easy as expected. And be prepared for the change exposing more change required. If you think the change will be beneficial don’t let others’ resistance stop it.
Yes – this canoeing is hardening me, making me more determined. And to my taichi teacher if nothing else the canoe trip is teaching me to NOT give a shit for trivial things, Concentrate on what’s important. Life is too short by far!!
Posted by thomas monks at 14:39
This river, ‘this canoe trip’ is mysterious. You never know what is going to happen. I have been on this river journey for almost four years now. Strangely that is the third time I’ve corrected four tears typo to four years. Tears might be a better meaning but four would be a serious under estimation. You’d think I would know the twists and turns by now or at least not get taken by surprise. I have said it before, ‘Be prepared but don’t anticipate’. How much easier it is to preach than to practice.
A few months ago they scanned me while I was being infused with chemo. During the following few days on the usual white fisted ride down the ‘rapids’ I forget all about the scan until I got a surprise call to tell me it was clear. Now ‘clear’ to someone with metastatic cancer is about as good a piece of news as one could get.
Very recently they (they being the Radiology guys not the unknown conspiratorial ‘they’) scanned again. This time while on a quiet section of the river. Strangely (or maybe not so strange) this time I’m not forgetting about it. It is nearly always in my mind and probably will be until I get the results. There is a widely used term to describe it – ‘Scanxiety’. It can be a tough station …. Waiting, waiting, waiting. Waiting out the months between scans, waiting out the days between scan and results. Always waiting …
That is the dark side of cancer. It has an incessant presence once you get caught up and involved in it. It catches you out all the time. I thought I was getting to be a pro at this canoeing stuff at this stage. I thought I had the techniques and practices all sorted. But this shite just keeps gnawing away (probably not a great term) psychologically. The dark side …. that is an exageration … Lets just say one of the darker sides. I am sure there are lots of shades of dark. Through the greys and unto black.
Anyway, back to the meditation, back to exercising, back to communion with Nature and back to trying to be kind to myself. It is a discipline and continuous work. Takes incessant to stand up to incessant. There are some in much worse situations.
I’m happy to get to post. I don’t write often enough by far. That was good. Now a dear friend mentionned recently about just taking a break and smelling the roses. Very good advice. Wonder where I can find some roses.
Is cancer self aware?.Does it have consciousness? Is it aware of itself and of the environment it is living in? Is it aware of itself? Is there any intelligence there? Can it play tactically?
Does it think? Does it plan? Can it strategise?
Mine is gone at the moment – Hopefully for a long time but it was gone for a long time before and eventually came back in the same guise. To a different section of my lymphatic system but obviously with the same intention. Easily seem off by an incredible Oncologist and her battery of treatments.
Does it go away at all or just hide waiting for an opportunity to re-emerge, and if it re-emerges will it do so under changed conditions, genetically or otherwise.
Seems to me all games or rounds to date have ended in stalemate. Three rounds – three stalemates.
Is it useful for me to think in these terms, Waiting fir the next game or encounter.
Maybe I shouldn’t expect it but just be prepared. Just keep an eye half opened
This is a long river and lots of bends and rapids still to be encountered
“All the world’s a stage, and all the men and women merely players: they have their exits and their entrances; and one man in his time plays many parts ……”. William Shakespeare
How much easier life could be if one could accept that it is a drama. We are playing ‘parts’, parents, workers, learners, teachers, tourists, canoeists, cancer patients ….. Everything we do is a role. We are those roles only while we are playing them but the roles are not who we are. Better not to get too ‘caught up’ in the role. we should play each part at the appropriate time and play each part to the best of ones’ ability but know that it is all about playing the role. All roles are important, they are ALL part of the ‘play’ of life. Experience each role!. Enjoy each role!. One person will never always be the hero or always the villian. Life is about variety and should be accepted as such. Stop briefly between each role, all the better to rehearse for the next part. Hero or Villian, Pleasure or Pain, Good or Bad, Rapids or Calm, they are all transitory.
A few short weeks ago I wrote about being on the rapids and having a really tough time. It felt as though I was in for a long tough ride. I was prepared for a long haul. Imagine my surprise when the Rapids went still – Literally still in a flash – I found myself on a calm stretch, a lake almost. The frantic energy of the Rapids just abated. My oncologist called (unexpectedly I must admit) and told me my scans were clear. The most unexpected news. Very welcome. Another valuable lesson – Don’t anticipate!, Don’t expect!. I just hope I can carry that lesson with me if and when the waters start speeding up again. But for now, Summer has broken out and meditation is boosting my supply of Satvic energy. I can loosen my grip and relax. I might even have more time to blog as I had originally intended. Hope so!!
I wrote a blog on emotional rapids almost two years. I really didn’t think it would would take so long to have a re-look at that aspect of the canoe trip. In the previous blog the talk was about the sudden appearance of sadness and fear out of absolutely nowhere and the ‘raw-ness’ of these emotions. They are almost pure and are always powerful and somewhat overwhelming.
Going down a violently moving series of rapids (which is the only way I can describe my chemotherapy experiences to date) is bound to bring up emotions and this latest episode is probably just what should be expected. If I had to give any advice to fellow canoeists (and am addressing myself here also) or their close ones it would be … Expect nothing, anticipate nothing but be prepared, Don’t get caught in it. If the emotions arise let them – They cannot be stopped, They must be acknowledged, They are valid and They will abate. They are transitory.
Anger at the whole trip, not the cancer, not the treatment but at the lonliness of it all. Have just today reached a slowly moving part of the river. I need the rest … there are more rapids up ahead. That’s the nature of the trip. Have heard news of the passing of a fellow canoeist and of another going into the river. I feel for them ……….. I wish them well
I usually try to stay calm, cool and collected when the river gets really rough. It is not always easy. Chemo on monday last – not too bad until this evening – Now have fallen into a rough rapid flow – Always happens – Sporadic episodes of irregular stomach spasms not unlike but not then very like hiccups. Have been there lots of times – after nearly every cycle – must be closing in on 20 cycles at this stage.
This stuff sucks the pleasure out of life – Horrible physically at the moment and then horrible psychologically for another few days.Then the inevitable intensive self care and recovery in time for next round
This is not me – this is a sheath – I am not cancer, cancer may be part of me but just a small part I need to get back to my essence – my calmer self
Horrific, Horible,Horrific …………….Horrible….Horrible
What choice do I have
‘I cant go on, I’ll go on” – Samuel Beckett