I’m trying to break that habit of people being afraid/not sure/ to ask about cancer I talk about mine to anyone who will listen Will you be able to reverse the colostomy? I was able to share my ex mother in laws journey with bowel cancer and the intimacy of colostomy bags and the problems they throw up so I have a good idea of that but I now share your journey of beating cancer She is 20 years clear Do you find once people are comfortable they become inquisitive? Me I’m partial remission it’s as good as it gets as I have an aggressive form of Myeloma and I achieved that from a Stem cell transplant using my own stem cells. I did start with chemo VDT is the usual, it didn’t respond to that so a tumour developed on my spine fracturing it Had radiotherapy it seems to have done its job there Next intensive chemo to reduce my paraprotein by half 45 to 21 was the aim to go to stem cell I got to 25 that was November last year Through the year my PP has stabilised at 6 along with that they check my kidneys they are called light chains, they check the break down of my bones being filter through the kidneys Started at 2000 now 64 I have a monthly infusion of Zometa that maintains my bone break down which shows with the 64 So if that all stays stable I’m good to go for 2/5/10 years they don’t know what they do know is it will rise again and I will have to do it all again I’m here I’m alive and I’m enjoying every day that’s given to me I’m so thankful as I have kids so I have to live for them Now my hair is growing it’s so bloody curly I look like a sheep i get strangers asking to touch my hair usually ladies You gotta have some fun so I let them and then I can waffle on See there you go that’s nearly a whole thread page devoted to me me me lol I may well take you up on your pillion offer when I’m stronger Hey how have you faired mentally? Viv x
Amazing Vic, this is why I describe us as superheroes - walking around and no-one quite knows what secrets you are hiding. Words come easy but I know behind each one that’s been one hell of a tough time. And yup, as you hint at, it’s the mental part that is hardest especially with kids. I was like some kind of crazy mad positive person after the two weeks of shock t being diagnosed. I was buzzing. Cue months of chemo, radio and a big op and then the likelihood I am all clear and I enter into a world of being really down. My counsellor tells me I am revisiting the emotions of diagnosis, kinda like PTSD. After being let down by the NHS I came to the realisation it’s only me that can fix me. Then a chance meeting with a friend on his bike. The day I signed for the Monster literally I was mentally fixed. So now I am in a good place mentally. Physically still dependent on the morphine and codeine but weaning off slowly over 6 months, should be off it at Christmas. Having the bag is the same experience you will know as having cancer itself - lots of ups and downs. Culminating in me realising to tell everyone is less stress than trying to hide it. Not only did it save my life but the pain I used to be in is gone. Now 6 months later I don’t even notice it, quite amazing really. But yes in the early days it’s quite a struggle to get used to, horrible in fact. So pleased for you that your oncologist has got such a forward thinking plan, pretty amazing really isn’t it. I really feel we are fortunate in one respect - we value life, I certainly do more than before. I don’t worry about dying, because I know there will unfortunately people out there without cancer that will die before me and they’re not worrying about being hit by a bus or whatever, so I won’t worry about dying either. Little did I know I’d come to Ducati Forum for therapy haha how much can a bike change your life huh! So happy to have found you on here Viv, keep in touch. And the pillion offer is permanent, just shout Glen PS: I’d normally apologise to others having to read our mush, but I won’t
Glen Exactly!!!! All of the above. After a whirlwind 12 months I found myself not sure where I belonged once I was left on my own I’m seeing a clinical consultant who is fantastic We have been through a life threatening time and I am told I have PTSD I asked my consultant for mental help and she gave me Ray the above Along side him my path was crossed with an amazing lady called Gail from my local hospice who teaches me mindfullness about living in the moment I’m mega positive about it all I can’t give the cancer back but I can bloody well stay positive and fight it like yourself So here I am I get days where I find it all overwhelming but I can now dust myself off and work through it I don’t worry about dying either I can now organise my own funeral and what I want and discuss it with family and friends I know it will be sad when I go on that journey but I want them all to cry but to celebrate the life I had here with fondness and laughter Death is part of life not taboo Other religions celebrate death so why not us too
I’m off to mindfullness today with a group it’s been a 5 week course it’s the last one today I have just written a letter to myself that will be posted back to myself in a months time That’s a lovely bit of therapy
I couldn’t find the ‘heart’ button but if I could I’d be pressing it like a mad man. Have a great session today x —just spent the morning taking photos of my ride, with help from the kids, will upload them when I get a second!
Mild depression, work related stress induced, long story but in a nutshell I was tasked with sorting a huge quality issue for an British aerospace company single handed, after 6 months of bashing my head against this particular brick wall I cracked, took 3 months to recover, interestingly the task was then given to a full time team of 5, 3 of whom went down with stress, so hardly surprising it did me in on my own!, anyway water under the bridge now k
Geee whiz sounds a nightmare, can’t under estimate stress like that, it’s as physical as anything isn’t it. Hope jumping on the bike works for you too.
Ok, here goes, had some fun with the kids this morning making these photos, glorious weather up here...
Welcome - have a look in the UKMOC - their May weekender is in Llangollen - dat trippers welcome Great bins to
Interesting thread this, I’m there in terms of understanding and realising that life can throw a curve ball or two and the importance of finding something positive I was diagnosed with Ulcerative Colitis about 4 years ago, probably stress induced through work triggering an underlying issue. Lost 9kg in six weeks before diagnosis, symptoms similar to cancer, very relieved when UC was confirmed. Been on a roller coaster since, good days and bad, a variety of meds and 23kg lighter than I was five years ago. Currently on two immune suppression drugs which leaves me prone to infection and feeling drained most of the time, fatigued beyond what I thought was possible. There’s other side affects but I don’t worry about every issue, I’d go grey if had any hair... a side effect of a previous drug.. Two years ago, Wilf from Moto Rapido sold me the most uplifting thing aside from the drugs, my 1200R monster. A get well present to me if you like, it never fails to cheer me up if I feel like shit together with all my ducatisti friends Life can be short, make sure you make the most of it while you can Ped
Motorcycling should be on prescription IMO , look at some of the most effective anti depressive treatments, mindfulness , talking therapy , excercise, riding a motorcycle requires single minded concentration - mindfulness box ticked, every time you pull up at a biker haunt there’s a kindred spirit to talk to - talking therapy ticked, spirited riding leads to the release of adrenaline and endorphins in a similar way to hard exercise - exercise box ticked, no wonder it contributes to a feeling of wellbeing, there are lots of other positive elements to this hobby but the three above on their own are priceless when it comes to maintaining good mental health, hmmm!, wonder if we could get petrol tokens on the NHS ?
Amazing Ped, ye that’s what I’m talking about - just exactly what you said. Ah man it’s great to hear your 1200 has that same meaning. I mean. Riding a bike has a lot of intangible stuff wrapped up in it to begin with, but add a dose of life-changing emotions and you have a recipe for pure joy, medicinal almost! I remember once thinking that I am lucky because cancer is considered ‘special’ in the medical fraternity, I’ve been well looked after and I was acutely aware that there are conditions her don’t start with a C that carry the same and often worse impact on life. Thanks for reminding us Ped, UC is something that is always there and it doesn’t get adverts dedicated to it!
Spot on. Absolutely. When I am riding I am not a patient, not recovering, mind focused on one thing. If I had an arxe-hole I’d be shixxing myself for other reasons :-D
