I've never been inclined just to 'go for a walk'. I've walked because I need to get from a to b, I'm taking photographs for a blog, I'm exploring a neighbourhood, those kinds of things. Now I'm walking for my life.
As some of you already know (I left a note in the comments attached to the last post) I came out of hospital on 18th March. Unfortunately the chemo had only worked to a certain extent and the leukaemia has come home with me.
Last week I had a discussion with one of the doctors who arranges stem cell transplants. Right at the beginning she warned me that everyone who has this discussion with her leaves the room feeling grim. May as well share the grimness - and the hope.
The only way forward now is to have a bone marrow/stem cell transplant. If I don't I will die in about a year's time. They haven't got a named donor yet but they have samples in the lab and are working out if they can find a near enough match. If they can, and the donor checks out as healthy and still willing and available . . . I'll probably go back into hospital in about six weeks time. The chances of dying as a result of the transplant itself are about 5%. The chances of the transplant 'working' are 50 - 60%-ish. I'd be in hospital about five weeks. (Though after the previous chemos it took my immune system a lot longer than expected to recover so I'm bearing in mind that this 'five weeks' might stretch.) Even if it works, chances are that I'll be ill as I get over it - perhaps a couple of readmissions with infections. And I'll always be at an increased risk of other cancers, especially of the skin - will always need to wear suncream. An increased risk of cataracts too. Various other aches and pains. She didn't want to suggest this is going to be an easy ride!
'Transplant' makes one think of general anaesthetics but no. Chemo (and radiation?) will kill off my bones' ability to create 'my' blood cells. A transfusion will introduce 'someone else's' blood-creating cells. They will make themselves at home in my bones and from then on I will be producing 'their' blood. (I think this is it.) To go through this I have to be fit. My heart has been tested; and my lungs. And I'm walking. After more or less three and a half months in bed it was hard to get up the stairs when I got home. By 'going for walks' I'm getting stronger - ready to get knocked back again!
. . . And one of the places I walk is the People's Park. (I first told you about this park in December 2017 - A Parade of Bare Bottoms.)
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| In this urn dandelions and other non-planted plants have gone to seed. |
I've never before met such a purposeful park. There are nearly always people striding out along the paths clearly for the sake of their health. Sometimes they are alone (maybe in tracksuits - tracksuits seem to be an early morning thing) often in groups. When I lived in Dorset I found myself getting irritated with joggers and runners. I'd be poking around in a bush to see what was living on the underside of a leaf and they'd pass at a steady trot, apparently oblivious to anything except their bodies. I'm trying to disentangle my prejudices. People who run - I admire. Just as I am stunned by the cross country cyclists in Yorkshire. So why I took against the keep fitters who lived near me, I don't know. It was something to do with changing the atmosphere of the place. Maybe it's because I guessed they were finding the track 'useful' rather than beautiful. But in this urban park, it feels very cheerful, people marching along and saying 'hello' to each other as they cross in opposite directions. Maybe it's because they seem very ordinary. They are ordinary people who want to be healthy and well. They are not a special race with water bottles. Meanwhile, there are others who come to sit and relax around the fountain which has water in the basin but none that squirts in the air. There's a little playground too - swings, a small slide, a climbing frame. There's something very purposeful about the way children play there. They don't hang around. They swing for a bit then leap off and run to the next thing to do.
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| Dead Nettles and Shepherds Purse in an untended urn. |
Tell me, do you find yourselves reacting in a huffy or hostile way to people doing things in one place that you'd not object to elsewhere? Buskers might fit. There are good places to busk where the music adds to the atmosphere. And there are places where the same music would be downright irritating. Walking purposefully in a park is one thing. If I had to share the paths with joggers, that would be another.
32 comments:
That was a difficult read Lucy. But you are going in with strength, determination and spirit that will bring you out of the other side. Wishing you all the very best for the coming days. And if I could, I would send a Hoopoe to your own garden that you could share with your new walking pals.
I admire your courage, Lucy, simply in posting all of this. I can only say, trite though it may seem, that I wish you all the best in this grim struggle. It must be daunting to face all of this knowing that even with a positive outcome life will be difficult. As for your remark about people being intrusive in given situations, I agree wholeheartedly. We go to observe birds and other aspects of nature in a local park and now that a paved track has been added it is always an issue with roller bladers and cyclists. We tend to go on days when the weather is not "good" for humans to minimize the competition from the speed freaks. Perhaps across the miles, Lucy, you can feel the warmth of this heartfelt giant hug I am sending you from Canada.
I wish you the best Lucy, that sounds so dumb saying that. Your struggle is being meant with your strong determination and positive outlook. We will be on the sidelines cheering for you and sending you healthy vibes.
Sending lots of love. I've sent off my swabs. Perhaps I'll be the one. Xxxxx
I have a friend who has come thru the other side - fit and strong and chirpy.
When we are hiking and pausing at each flower, the friction is with mountain bikers, whizzing along. So unexpected!
I hope with all my heart that all goes well for you Lucy. The mist in those photos echoes your words. You can't clearly see the future. I'm praying that the mist will clear, and there will be sunshine. While you are walking, remember we are all there with you, sending positive thoughts and love. You are not alone. Much love. Karen xx
Hello Phil, that would be amazing, to see a Hoopoe pottering around on the lawns at The People's Park.
Thank you for your good wishes. Unfortunately how my body will react to the treatment is out of my control. I find myself a bit bewildered - I don't drink alcohol, I don't smoke, I have sometimes been a little overweight but not a lot, and when the leukaemia struck I was especially fit - what with having the allotment and Halifax hills. That I have leukaemia appears to be random: whether or not I come out the other side seems similarly so - though I am fortunate to be under an exceptionally good hospital (St James in Leeds).
Thank you, David, for the good wishes and the hug. I used to find cyclists where I used to live especially difficult. They would literally yell at pedestrians to get out of their way, or skim by without ringing their bells. Round here cyclists in shared spaces are much more respectful, don't seem to think they have the only right to the way and will slow down while passing.
Thanks Bill. I will be catching those healthy vibes with open and grateful hands.
Hello Corinne. Thanks for sending swabs to go on the donor register. Wouldn't that be amazing - if you 'were the one'!
Hello Diana. Fingers crossed I will be in the percentage that thrives after the transplant. I imagine mountain bikers whizzing by while you are pausing on a hike can be really disconcerting. My experience of hill walking round here is limited but the terrain is rough, wide open and rugged so the bikes tend to hop and jolt along rather than whizz. (Their riders must be immensely strong.)
Hello Karen. When I am walking along on my own I shall imagine I have an invisible 'team' walking along beside me.
So sorry to hear of your struggles. I hope a good donor turns up soon, and that everything goes well with the transplant. I'll be thinking of you, and send virtual hugs.
Hello Susannah. Thank you.
That was a very sobering read and I truly admire your courage and fortitude in writing it. Like everyone else, I am sending every possible positive vibe your way and hoping that things come together for you. It's miserably unfair. Even though it was hard to read, I am so glad to see a post and an update from you.
As to sharing special places with other people, I am guilty of being pretty grumpy when folks intrude on my solitude out walking. It's unreasonable of me because everyone has as the same right to be out enjoying the space. Much of the running I do is through the countryside and it's part of the way I connect with it. Yesterday, as an example, I saw a kestrel and heard cetti's warblers, yellowhammers, skylarks, white throats- so hopefully not all park runners are out pounding the tarmac and racking up the miles rather than enjoying the fresh air and the plants/wildlife that are around.
I came across your blog after reading your comment at CT's. So hello, and gulp. I don't have words for what you are going through, but I do know from my own (relatively) small bumps in the road that writing can help, it is cathartic, it gets feelings out, helps straighten thoughts and ideas.
As for sharing spaces - no, I don't think you are wrong. Don't get me started on mountain bikes in the Lake District. GRRrrrrrr. On a smaller scale, a couple of years back I was trying to walk in a small park in Cockermouth. Two of the main paths through the small woodland were completely unusable because (sorry CT ...) a woman who runs a "running group" had her students sprinting along both of them - in two directions - so there was no room for anyone else. When I started towards one of the paths she shouted at me "keep your dog out of our way". I cannot tell you what my reply was . . .
It annoyed the hell out of me that she was using a free public space for her own commercial activity and making it inaccessible to everyone else, and she wasn't there for a few minutes - this was a two-hour session. I know that because a neighbour was one of the participants.
I admire this forthright post making it clear just what the near future is going to be like for you one way or another, and I hope that it all goes better than expected.
Like you I rarely just go for a walk, and yes certain people do tend to make me somewhat huffy at times.
Your pictures are rather surprising for this time of year.
Take care. xx
Hello Countryside Tales. And thank you for your supportive good wishes. I think you put your finger on it when you talk about us all having the same right to share the space. Some people / groups seem to forget this and think the space is there primarily or exclusively for them / their sport and this not only affects how they behave in it (like cyclists who almost mow down pedestrians) but they give off an atmosphere that spoils the peace even when they're not actually being dangerous. I like to be able to walk along looking at nature or thinking my thoughts. If there is a natural flow, a sort of dance, a quiet awareness, between users in the same space, this can happen. But there are places where you have to be constantly on the look out for collisions and it's very unsettling.
Hello Jayne. A class being run on the paths is a bit extreme! And when you were told to keep out of the way - that's out of the spirit of the common use of a park. No wonder you were annoyed. (Unless your dog was trying to join in!)
Hello Mark. And thank you. I took these photos at about a quarter to eight in the morning on Wednesday (29th April 2019) It really was a lovely atmosphere.
Thanks Lucy, I admit, I was annoyed. If I had been alone I might well have walked down the middle of the paths just for the bl**dy hell of it. However, with my elderly dog (who was on a lead for her own safety), we might well have been mown down if I'd tried it.
So once again, a bully got her own way . . . I thought about complaining but this is a small rural community where it sometimes seems nearly everyone is related to everyone else and you have to pick your battles carefully. Take care.
I'm sorry you are going through this, Lucy. Your courage and determination are admirable. Know you are in my thoughts and prayers. X
Lucy - I had hoped the treatment had all worked and that you would be coming out the other side as it were, on the road to recovery. Reading this I see how much further there is to go and how uncertain it all is. I wish you well with all my heart. Much courage to you!
After that it does seem trivial to say I find cyclists using the canal footpaths at tinkling speed and right of way attitudes particularly galling
p.s. my husband died in October and I had to leave London and have come North to S. Yorks so am not so far from you if there is any way I can be of practical help (my email lauragranbyATgmailDOTcom)
Dear Lucy, I never did much walking until we moved to Cheshire. I came to enjoy those frequent walks and felt better for it.My thoughts will be with you through the hard time ahead.
At the age of 73 I had never given very much thought to religion and decided to read the new testament, the NIV version.Conclusion -- I am glad I read it. wish you well, Alistair
This came up on my FB and I thought of you
https://sabmr.co.za/stories-about-patients/zanelle-britz/
Thank you Lucy for your most honest and courageous post letting us know what is happening. In the words of the anthem that accompanies one football team that is playing tonight and being avidly watched by the Liverpudlian member of this household:
"Walk on, walk on
With hope in your heart
And you'll never walk alone"
You will continue to be in my thoughts. As for space sharing I get grumpy when my next door allotment neighbour turns up at the same time as me and whistles loudly whilst listening to the radio. In fact I could bat for England on the subject of noise. Grrrrrrrr .....
Sounds pretty grim. Good luck and do your best to keep cheerful.
Hi Lucy, I'm so sorry to read that your health battles continue and had hoped that this post would bring better news. Well done for having such a realistic attitude about your future; I truly wish all the best for you and hope the process and outcome is as positive as it can be. To be honest, I feel quite sad for you and am willing you to make it through.
On another topic, I'm not sure I share your frustration with joggers; living so close to Hampstead Heath, joggers, dog walkers, people moving in vast swathes, etc, are a fact of life on a pleasant day! I think I'm more or less immune to it now but much prefer to walk alone and silently in quiet spaces where I can look at plants. Enjoy your park walks. Caro xx
This is a bit grim - but there is always hope. And if walking helps that can't be a bad thing, as I think its one of the best things to do. I walk a lot!
Hope all things work out for the best.
Cheers - Stewart M - Melbourne
Hi Lucy,
So sorry you are having such a grim time and with my hurdles to come. Glad you are now getting stronger and can get outside and enjoy looking at nature closer up. I always think of you when I see a plant growing in an unusual place.
I know exactly want you mean about people intrusive in given situations, the old railyway trail certainly had a number of those. Sending you a big Dorset hug. Sarah x
Hello Lucy, I know a bit about what you are facing. I have Leukemia, and I am 5 years in remission. Praise God! When I was diagnosed in 2014, I was told that my Leukemia (AML caused by a FLT3 mutation) had only a 20% survival rate. I was evaluated for a stem-cell transplant, but was told that because of my age (in my 60s) the survival rate for the transplant was only 50%. I decided not to do it, but I think the transplant survival rate for older people is much better now. I had a fine team of doctors and health care workers, but I give the credit for my survival to my faith in God, and the prayers of my friends (and people I did not even know).
I still go to my oncologist every 3 months for blood tests (5 of those little tubes of blood!) to make sure the Leukemia is still in remission. My chemo treatments made me very sick (at one time I could not even stand the smell of food), but the only lasting side effect is that I am anemic (my red blood count is still too low, and I get tired easily).
I will be praying for you as you build up your strength for the stem-cell transplant. May God bless you with a return to good health!
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