› Forums › General Melanoma Community › Something Different
- This topic has 19 replies, 12 voices, and was last updated 4 years, 10 months ago by
MMH.
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- May 24, 2019 at 6:19 am
There have been a lot of tough posts on here recently with a lot of people going through difficult times. With my next scans only 3 weeks away, which I don’t have much hope for, I thought I would offer up some things I have doing to make myself feel better. I have been Stage IV for 18 months with deep mets in my arm and multiple lung nodules, have previously been on Ipi/Nivo with pretty bad side effects and started Nivo mono after 2 surgeries and progression 3 months agoI have been really trying to increase my exercise levels by cycling or running 3 times a week and completing a number of charity bike rides for a local hospice (seemed like a good investment!!) and the charity that supports my hospital. This makes me feel like I’m having an impact with my life and doing something of use.
I also started to think about legacy some time ago in case treatment doesn’t work out, that went beyond my children. I was fortunate to be asked to get involved in a project at work to reduce drownings in the Thames (the river that runs through London that I am responsible for) many of which are as a result of suicide. I decided to throw myself into this as I saw it as an opportunity to make a difference and took on the role of leading the project. Earlier this week, after a year of really hard work, Prince William launched the strategy on our behalf.. My yearning to achieve some sort of legacy, should the worst happen, has been completed and I get a lot of comfort from it.
We all have our ways of coping but I thought I would share mine in case it helped others to cope or find a way forward. If you are interested, the news article is linked below. I am the guy in the white shirt on the boat.
Best wishes
Mark
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- May 24, 2019 at 11:46 am
Mark;
Had tears in my eyes when I read your post. What an amazing legacy that you have created. I hope and pray that you have no need for a legacy in the near future and continue to bless the world with your presence.
God Bless and keep on keeping on!
Ted -
- May 24, 2019 at 1:18 pm
Oh, Mark! So sorry for what you have and continue to deal with regarding melanoma. But, wow!!! You are AWESOME!!!!!!!!!!!!!!!! I hear you and raise a glass (well…cup of coffee)!!! Your approach is very reminiscent of mine – not that I have done anything nearly as grand!!! But, I think what we both feel in regard to our approach to LIFE (not death) is the thing that binds us. The thing I tried to share with my children (biologic and the many I’ve cared for over the years). And that is – LIVE!!! I agree that moving…everyday….the best that you can – which may mean a nice long run, a walk around your house, some leg lifts or arm circles while sitting in a chair…can make you feel better…even if it doesn’t feel good in real time!! HA! But the essence I think, is to look beyond ourselves. A hard thing to do if you are a troubled teen or dealing with a life threatening illness. But, it works. When we look to what we might do for others and the world around us…we can find all kinds of ways to be our best selves and in so doing make the world a better place and our lives brighter. You are a light for all of us. Thanks for sharing. I wish you my best. celeste -
- May 24, 2019 at 5:06 pm
Hi Mark, your legacy is already so powerful. The work you do is absolutely beautiful. Like the others above said I’m hoping for you for a “staygacy” with many more years to come. your story really spoke to me since earlier this week I had read about a man who had jumped off the Golden gate bridge and survived, and he had said he just wanted someone to stop him before he did it but no one reached out to him so he jumped. So he’s working on a net to go underneath the Golden gate bridge. Your work is so amazing. Thank you for all that you’ve done for all of us! your work matters a great deal! -
- May 24, 2019 at 5:52 pm
Hi All
I’m blown away by your comments
I had posted in the hope that others may consider just doing something to keep their mind off things or to create some form of legacy in the hope they don’t have to use it for many years to come. I completely agree with Bubbles mentality and since the news of lung mets 3 months ago have spent the time doing as much as I could possible achieve to ensure I get the most out of life while I feel fit, well and able. In fact tomorrow I am cycling 60 miles with friends to a nearby seaside town for a quick beer and something to eat with our wives and children (they are driving!!). It certainly makes me feel better about things and even when I haven’t felt great just getting out for a walk or being active really lifts your mental spirits.For those that may be interested we produced a film to accompany the launch – its a bit on the sad side i’m afraid, but that is the reality of the issue and something I have developed a passion to address. The point about nets under the Golden Gate Bridge is really interesting as that is something we are trying to promote, but there is a lot of resistance especially due to the age and historical significance of some of our bridges.
Hoping you all stay well
Mark -
- May 24, 2019 at 8:42 pm
A 60-mile ride sounds fantastic. Hope it’s flat. Keep on truckin’. -
- May 25, 2019 at 5:04 pm
Wow, Mark!! Just … wow!! I couldn’t stop the tears either >> this kind of work is sooo important!!! Hats off to you, sir!!! Wishing you the very best!!Barb
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- May 26, 2019 at 2:37 pm
Thank you for the boost, regarding both physical activity and helping others. I’m doing well with the former (for me it’s a daily dose of dance, yoga or walking), but have been struggling with the latter because I had to give up a beloved volunteer project when I was first diagnosed in 2017. I take heart, then, from your example of not allowing the uncertainty to hold you back. I know I will be happier and healthier when I return to reaching beyond myself.
With best wishes and a big thank you,
Lisa-
- May 27, 2019 at 9:36 pm
Hi Lisa
Glad to hear keeping active is helping you – it certainly helps me. On the voluntary work and actually in many things I find the balance between spending time with my family and trying to fit in everything I want to do. I do worry that the time I spend on other things is lost opportunity for time with my children but I try to balance this the best that I can.
Best wishes to you
Mark
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- May 28, 2019 at 10:45 pm
Hi Mark
Totally with you on keeping fit, I bike to work and back every day, only stopped for a week this year due to snow, I have my limits.
Most Saturdays I cycle to a not so local coffee shop, 30km, with a group of guys for brunch, can take a couple of hours each way, but its important for my sanity. Last summer I biked to my infusions, that was a day and the best part of 100km each way. This summer I’m heading to the mountains hiking with my better half as much as possible, just got to get out there and live, I’ve also taken up yoga, apart from stretching, I find the meditation really helps, the last thing I would have expectedI’ll not let this disease run my life.
As for your legacy, hats off to you, totally inspiring, I know the Thames well, being originally from London.
good luck and keep up the fight
Tony
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- May 29, 2019 at 6:20 pm
Wow Tony – 100km on the day of infusion!!! I have been a bit wary of pushing too hard on infusion day and for a few days after. Most I have managed on day if infusion was 25km but was a bit nervous even though I felt fine.
I have just been looking at a 120km ride 2 days after my next infusion – I was bit worried about doing this but hearing your story I’m going to book in and do it!
Hope your keeping well and the trial is progressing now
Mark -
- May 31, 2019 at 3:37 am
Hi Mark,
I’d bike over the day before, then bike back the day or sometimes 2 days after, I think feeling tired due to exercise helped to mask the infusion fatigue, if I’m going to feel tired, I might as well have a good reason.
My CDK trial actually starts on Monday, so I’ll be posting something on that next week.You’re in London, so it’s got to be a red or blue weekend, enjoy the match
Tony
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- June 1, 2019 at 5:47 am
Seems a good plan – I suffered fatigue after the first dose but not so much on the 2nd / 3rd. Like most I don’t care too much provided it’s doing something!My wife and son are big Liverpool fan (Both born and raised in the SE!!)) and my daughter and I are Spurs fans so it’s been a fun couple of weeks!!!
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