Hello everyone. After nearly three years of fighting Mr. C. I have to admit he's getting the upper hand but with the castards worldwide record of causing pain and misery that's not surprising is it.Jaq and I have spent just a little short of three years chasing our Mr. C. Around my body and I think we were successful because the coward has now gone deep into cover by seeking refuge in my Pelvic area and pressuring the nerves to my back and legs. So now I face as of a month back an estimate of 6-12 months to live.Yes I'm dying, no other way to say it and please don't be frightened to say anything that you think might upset me. I've told many who have visited no words or phrases are banned in my presence. Take a look at the picture taken Sunday 14th August as I type this. Do I look to be just about ready to check out of this world, no not just yet.
My last post was to the effect of being unable to blog because of back pain and this is still the case only now we know the cause.
As you can see I am sitting up in hospital typing this but have Morphine via a slow release tablets and by mouth on demand. I came in here a couple of days ago so I could have another MRI scan to see what my best options are for palliative one off, for now, radio therapy for pain relief and of course to get the exact dosage of slow release Morphine tablets decided. Hoping the therapy will be decided Mon\Tues and I can get home.
How I ended up here is another story. So to start a quiz question. " How many ambulance personnel does it take to get a boater off a boat". Answer 7+ 2 response cars and an ambulance oh! not forgetting a Southampton sling. Not sure that name is correct and not found it on the web. What it does is replace a normal stiff spinal board with a canvas type
blanket that seems to be filled with Velcro blocks that are pushed close to you whole body sticking together to form a mould around your whole body. It is strapped closed and you can be tilted in any direction without your body flexing. Imagine a normal board where you lay flat this thing enables them to tip me head or toes down or on my side and I never moved at all, like you had been soaked in plaster of Paris. It was developed to carry patients up twisting stairwells in ships engine rooms or stairs similar to those say in a lighthouse.
Not having the pain under control lead to an ambulance being called that resulted in a car and paramedic who was concerned of pressure on my spine so called for the ambulance to collect extra staff because of the tight area in the rear boat bedroom. It was decided to send for a car to collect the blanket device.
On my side through the narrow corridor laid across the cooker and the back of the dinette sideways through the front doors and straight onto the stretcher and I felt no body movement at all.
So an MRI scan led to Stoke Mandeville hospital entering into discussion and sending images back and forth with my pain relief increased I returned home late evening. The following lunchtime the Royal Free in London who have been looking after me for sometime phoned wanting to admit me for tests and monitoring plus another scan. At least I can with just some discomfort sit still long enough to read and type this.
We had cruised as far as Gailey on the Staffs and Words canal before I kept getting strong urge to turn back south. This was before on the advice of the osteopath I contacted the Royal Free who arranged another scan. 48 hours after which they phoned with the news and an appointment for Oncology.
So a lot of travelling but a lot of help from the boating community was most welcome with just Jaq able to do locks while I steered it was OK on long pounds but my pain increased and Jaq put out a call for help while I was laid out on the folded down dinette.
We had Arthur doing a very long stint of two flights helped by his daughter, Ken and Sue, Jennie and Chris then Adam, all boaters. Jaq still has to have her other knee replaced as it's getting worse with all the extra work looking after me, again friends have come up with suggestions to make this happen as it will not be near where we are now.
At the moment we are on the southern Grand. Union and have a mooring arranged by friends while the boater is cruising at least till end of August perhaps longer.
We are connected with the GP who I've had since the bowel surgery plus the nurses and also the visiting Ian Rennie cancer hospice nurses. Some might think it's a bit early to be thinking of hospice services but you are very wrong.
These two sets of nurses work together and can arrange changes of medication without my having to step into the surgery and within a few minutes they can get through to your GP. and get new prescriptions without you having to make a GP appointment.
They also arranged for people to come and see what they can do to make movement around and in and out of the boat or perhaps your house. Hoping to get a stool or seat to fit in shower in case the legs weaken as they have once or twice, not a lot of space to fall and avoid something to hit if you fall in a boat bathroom.
So I do encourage anyone in a similar position to get known via your GP to theses angels.
Sorry to have gone on a bit and perhaps in the near future I can do some more boating blog posts. Not sure if I missed anything but ask what you will openly or if wanting anonymity use e mail.
The view from the 11th floor here is to the east and takes in the Shard, St. Paul's Cathedral and Canary Wharf plus a few city sky scrapers. North East is Parliament hill and the edge of Hampstead Heath. I can also see the Olympic stadium.
A bit woozy with all the meds so hope it all makes some sense.
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37 comments:
Funny how you texted me at the very same moment I reached for my phone to call you. We've been deeply connected like that since we met in the parking lot at the Seattle Travel Lodge in 2010. I'll never forget that striped cardigan you were wearing!
I hate it when you are in hospital--especially now. I miss you and I wanta and need you home. I'm sure passer's by our boat think I am in here talking to myself but I'm not--I am talking to you so I can keep on track with what I'm doing and stay connected to you.
I love you Les.
Jaq xxx
Hi Les.
Sat here reading your post and thought I would drop you a line and say "Hello" from a rather cloudy Warwick.
Both Keith and I feel so blessed to have known you for all these years and we know you are prepared for what the future brings. Talking about death is nothing to be scared about, it will come to us all sooner or later and sadly in your case it may well be sooner, but not just yet my dear, you still have much more to do and definitely more posting to do.
Keep smiling and fighting and we will keep hoping that you get home very soon to your special wife, who we know loves you so much more than any of could possibly know.
Love and gentle hugsss
Jo & Keith xxxxx
It's lovely that you are feeling able to blog again as what you have to say is always interesting. We have just moored up where we met you last time, but all on our tod at the moment. What fabulous views you have across the city from you window. Love to you bothe xx.
Ann and Keith,
nb oakfield
Hi Les lovely to read your post even if it is not all good news. Your straight talking about cancer and how you are dealing with it is nothing short of inspirational. You and Jaqueline are amazing. You have always shared your lives with us the ups as well as the downs, we have ridden the waves with you through your blog and face book.
I think that everybody would like to leave an impression on this world when we leave but not many of us have such an impact on others peoples lives like you and Jaq have, because you have allowed us in to share your story. I have not been lucky enough to meet you both in person but I feel like I know you quite well. For me personally you have made a huge impression on me, I have been so touched by yours and Jaquelines love story and everything else you have been through so a huge thank you for that. I am wishing you comfotable pain free days with your lovely lovely wife and look forward to both your future posts that have always made me laugh and cry all at the same time!! As always love to you both Debbie xx
Good to see you posting Les even though it is from a hospital bed. As had been said by others the pair of you are an inspiration to many of us. Enjoy your fantastic views, but not for too long as Jaq needs you at home. I am sure we will see you again in the not too distant future. You know we are at the end of a phone. Jennie and Chris x
Aha look at that cheeky smile. You always have that cheeky smile. It's so good to see you getting on with your blog and filling the readers with update of the latest with you as open and as honest any one can be. Such a good read you are So inspirational. You have been very brave and such a fighter in the last couple of years.
It was so lovely to see you last weekend. We had a great time on board with Jaq and yourself. And promise to visit you again soon. So you get some rest, feel better and get back to your angel on board soon with that cheeky smile on your face.
We love you dad. ♡♡♡
Ozlem & Teo & Batu xxx
Thank you for posting, Les. My thoughts and prayers are with you both.
Hi Les
You are being a very brave boy facing all this s*** with dignity and aplomb. We are going the same way and your frank and honest account of the journey is inspiring, something you have heard from so many others. I salute you mate.
Keep strong
X Lesley
It was lovely to read such a great blog and incredibly humbling. Stopped me whinging and whining abt my life pretty damn quick. Wish I knew what more to say but I don't. I'm sorry, I'm angry, I'm furious that it's happening to the most beautiful of souls. 😞 thank you for sharing though, I feel privileged Lots of love to you and Les. Boater, Nicky Warren
Les. I feel humbled. Not just by reading your words but by knowing you and Jac. You're an awesome couple and you will be in our hearts forever. Bless you. James (and Doug). xx
Just popped by your blog as was wondering how things were and look find a post from today! So lovely to 'hear' your voice again. God bless you as you face the next few weeks and months ahead, make the most of the time you have the wonderful Jaq, love, laugh and live together.
Much love to you both, Ian and Karen 😙
I really don't know what to say in such circumstances, it must be hell for you and equally hell for Jaq. I don't have a clue how I would handle things if I was in your position.
I can only say that you seam to be getting the best care to suit your needs on a day to day basis.
Hi Les, Really good to see your smiling face and know at least you aren't in pain. We think about you and Jaq all the time. Wish we could take some of the strain. Hope you are back home together again very soon xx
Sally and Joe
Hi Les,I have missed your blogs....so sorry to hear your news....you are both always in my thoughts, prayers and I'm sending you both healing thoughts to ease your pain. Can't wait to see you both at the end of September......spoke to Jaq earlier today it was so lovely to hear her voice after such a long time. ...glad to hear your not in the marina. ...keep an eye out for those beautiful kingfishers along that part of the cut.....hope they sort your pain relief out so you can both be reunited back on board. Love to you both ...your very special to me take care mate ❤ Robert & Roseni Xx
Life can be a bitch and for this now to be the outcome after all you and Jaq have gone through is the worst blow of all. Our paths have never crossed but you have shared your life with us and for that all we can say is thank you. We feel blessed to have followed your journey and will stay with you to the end. Hang in there, get back to that wonderful wife of yours and make every second left count. Xxxx
It is so good to see you, Les! You are certainly right about looking way too good to meet your maker yet!! Hopefully you will get a good pain management plan figured out so that you can better enjoy your days and rest well at night. You have been through so much, they really need to get this part right!
Jerry and I totally agree that the frank way you and Jaq discuss your day to day activities is not only inspirational, but very helpful to those of us lucky enough to know the two of you. We couldn't be more proud of you, but Oh! how we wish you didn't have to deal with all of this!
Love you more than coffee and donuts with sprinkles! Always friends, C & J
Hi Les, I remember the first time we met, briefly on the shroppie, just a few words to start a friendship. Then last time we met this time with Jaq, on the Coventry and I was treated to food heaven in a cake Jaq had made. I think you had just altered the dinette. You were both so very happy, it stayed with me and still does thinking of the simple joy of two people being in love with each other and in love with a lifestyle. You are both brave for different reasons, you know them, I do not have to elaborate. Sadly I do not have a faith, I envy other who do, but I gain strength in the goodness in people and you both give this to me, so a very selfish post but a thank you post. The canal community is good and strong, it will support you and Jaq just a long as each of you need it, be assured of that.
Hello, handsome! I'm glad to see that you certainly don't look like someone who has been told they are dying! (But then what do they really know, anyway?!) Sure hope the docs can get your meds figured out so that you won't be in such pain and can rest at night.
Hope you get sprung from there soon so that you can be home with Jaq. She needs her Best Beloved home with her.
All the comments about your straight forward approach to life and death issues are so true! Your humor is uplifting to all of us - we learn from you every day. You and Jaq are amazing people and I am so proud to be in your circle of friends.
Sending you a big hug and lots of love - Cheri
Dear Les - oh my good man - you look splendid although you must be loopy with morphine and still in pain. Heh guy ... you've been fighting long enough...from where I sit across the pond...my thoughts of love are that Les you don't have to fight this anymore. Ride the ride with what ever grace you can muster, and if you can't muster grace ... then just pout and cry. Everything is allowed and okay. There is no right way to go about dying. You two have so much love surrounding you. It's wonderful for me to know that. And Les, Jaq will grieve Very big time And she will be okay. As you know, she has resources within her soul that go on forever. You gave her her dream and that will never die. I have promised her that I will visit and give her big hugs. You good man... you will be so missed.
School is about to start here in Pullman and we have a new foreign student AND we are taking off on a three month car trip! So life is good for us. Not so good for you two. Ah $%^&*(IO)_%^&* Karen
Hi Les,
What a brilliant blog post, frank and to the point about your situation. It makes me angry and sad at the same time that you’re having to go through this horrible time, neither you nor Jaq deserve any of this. I’ve read through all the comments above and agree with all of them. There are so many boaters and non-boaters out there ready and willing to be a helping hand to either and both of you.
I remember when we first met you at the water point below Bulbourne I think probably in 2009 and then the lovely time we spent travelling with you and your grandson Jack for short time. I remember the first time we met Jaq too, that was I think just down from Brownsover and Jaq was making ‘baileys’ Irish cream from scratch and we helped you both to ‘taste/test’ it! By-gum it was good!
Please know that when you’re gone you will remain in the hearts, minds and souls of all your friends and our hearts will go our to your lovely Jaq who will miss you most of all. She is strong and determined and your going away will hit her so hard but she will carry on cruising taking you with her in her heart.
You look well sitting up in your bed blogging albeit as you point out. still in some pain and we hope that it’ll not be too long before you’re back home with Jaq and maybe do a bit more cruising. In the meantime enjoy those wonderful views from your window, stay strong and keep that Mr C under control. We love you lots.
PS: George has left a reply for you on Still Rockin’s blog this morning too.
Les darling, There is nothing to say that has not been said above by others. The only thing we can ad is that we love and treasure you and the lovely Jaq, and that you had bloody well better be still in this world when we arrive in the UK in late September!!
No karking it yet, you old bastard! We need to see you so hang around for a while yet!!
Biggs hugs, you straight talking, clear headed boatman, M&D xox
PS Your approach to this is so refreshing and courageous, Les - a huge example to others, my friend. If nothing else, that is your legacy, and such a huge gift.
Hi Les
Sorry I missed you when I passed by yesterday. But glad that Jaq was on board for a chat and a catch up. I could have stayed longer but I am on a mission.
Death comes to us all and yet we are all so surprised by it. On the plus side you get a chance to put your affairs in order. Not much of a plus side admittedly but hey take what you can. :)
As everyone else says you and Jaq are an inspiration to us all. I love reading all your blog posts the medical and the history ones as they are all so informative and interesting.
Long may it continue.
Lots of love
Kath nb.bobcat
You're blog goes straight to my heart - I lost my dear Dad in similar circumstances to yours and, like you, he laughed at Mr C but he couldn't talk about dying. It's a brave thing to write about something so personal - thanks for bringing things out into the open. We wish you and yours peace in the days ahead. Xx
Hi Les
As you know Elaine is going through the same journey, hers is nearly at an end now. You are both so similar with no moaning or whinging, just getting on with it.
It is a total bastard to be sure, but the help offered to us especially from the boating community has been humbling.
We did meet once at Bulls Bridge and I gave you one of my beers, so dont forget you owe me one....
Cheers
Paul
I am amazed at how positive you have stayed. I thought I would have been better about my condition but no, I take it out on the ones I love. The more dependent I get the angrier I get. You and Jaq seem to handle it so well. I know you can say, what choice do I have but it is a choice to stay positive. May you have all positive days ahead, enjoy every minute of loving Jaq and her loving you.
Dearest Papi,
Yes, I am actually posting on your blog. Shock horror I know! 😂 it's taking me aback too. I'm not a fan of laying my heart down for ze interwebs to see, as I'd prefer to say it in person, but here it goes...
In the summer of 2002, you came into my life. Never would I have thought that I'd meet such an amazing loving and understanding human being. You are so full of wisdom and have never judged me. I can't truly articulate what you mean to me or how much I love you. But I will say this, I am blessed to have you in my life. I dont want to think of you not being here and missing important milestones within the Biggs brigade, as it is too painful.
I will however, do for you what I can, be there for you day and night, and try my up most to show you what you mean to me. I will then invest all the love I have for you into your amazing wife and do my best to support her.
Im sure the girls will agree with me in saying ...we couldn't have wished for a better father in -law.
So, in the mean time... Lets appreciate every moment, every giggle and every hug. Let us carry on doing what we can, as it's our turn to look after you. We are here at your disposal, so please embrace our support and take it easy.
💜💜💜Jojo
Hi Les and Jaq.
Sorry... I've only just heard the news. I've been off the blogs and living like a hermit since Sumo and my mum died. Preferring the company of Labradors to human interaction. (They don't try and tell me how 'peaceful' the iron age death cult is, every five minutes). Sheena will be doing some voluntary work at Bourne End's Ian Rennie charity shop over the winter as they do good work.
I am gutted to hear that mister C has come back. And I wish you both the best with your continuing fight and determination. It's heart warming to read that there is still some form of boating community left and that they've been generous and helpful.
I know you both like quotes, so here's a Daoist one....
“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” — Lao Tzu
Hi Les. How lovely to see you blogging again and looking so chipper! You are so brave to blog so frankly about your illness though I guess I shouldn't be surprised after the way you spoke so frankly when we met you and Jaq at Leighton Buzzard. I do hope you can get back to your watery home very soon. Richard and I are thinking of you. Linda xxxxx
The love and admiration for you both in all these comments is a measure of the effect that you have both had on so many people. The future for you both will still be difficult but your very realistic attitude to it is an inspiration to all those who see it. Our very best wishes go with you both, and you know where we are when you need a hand!!
Les, I feel very privileged to know you and very grateful for the happiness you've brought to Jaq's life. You definitely impressed me as one GREAT guy. I'm doubly happy because you are blessed by the happiness Jaq brought to you as well. I'm totally having trouble accepting this news, but want you to know you are both in my thoughts and in my heart.
Kialynn Glubrecht, Spokane, WA
Good to see you not letting it get you down Les, Jo and I are both thinking of you and Jaqueline at this time. Your smiling keeps us all smiling. Regards Keith.
Hello Les, at least you have a great view, much better than the one I had from Warwick hospital, being only 2 storeys high didn't help! Great to see you smiling though, keep it up. Hope you are making the nurses run around for you, you deserve it. Regards Keith.
Oh Les, this shouldn't be happening to such a wonderful guy as you. I knew from the very first time I met you in Bedford what a wonderful life you were going to have and especially after meeting Jaq via the various blogs that you read, you were so very happy.
I am devastated, well we are devastated I should say. You are so very, very brave Les and so is Jaq. You have both tried so hard to beat this awful disease and now it is trying another ploy and hiding all over the place.
I am pleased about one thing though that the medical teams seem to be looking after your pain and it seems they are on the ball with scans and checks etc.
You are a top bloke Les a very top bloke xxxxx
Lovely to see you posting Les, I share your pain, but not for the same reason, mine is a bulging disc which is improving slowly. If you look left of the Olympic stadium you will see me waving as I live about half a mile from there. My thoughts are with you both at this time, I just wish I could do more in person. I wish you all the best and urge you not to pop your clogs for quite some time yet as I finish work in October and need to get to see you and Jaq for cake!! I have car so will travel. Take care you two and fight the good fight, I can think of a word for cancer beginning with C but it's far too offensive to post on your lovely blog, but being a Londoner I am sure you are aware of what word I am referring to. Big hugs and kisses to you both. Love Carol BV
Well this isn't the way it was meant to turn out. Your time with Jaq has been far too short, but at least you have had that time - how does the saying go, "better to have loved and lost than never loved at all". Our thoughts are with you both and we hope you manage to get some more quality time together on the boat.With love xxx
Hi Les, I emailed Jaq last week but I may have an old address or something. I thought you were in Stoke Manderville Hospital, but re reading your blog I see it is the Royal Free Hospital which obviously is very close to us. I am at home in Hull until late Monday so I would be able to come and have a chat on Tuesday or Wednesday afternoon if you are feeling up to it. We are setting off back North on Thursday morning. If Jaq did get the email she will have my mobile number otherwise please email me or attach a comment to my blog I'd love to see you and pick your brains about historical stuff.
Cheers for now, Tony Porter
Tony
Sent e mail.
Les
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