The other day Sarah and I visited the Hematologist for the results of a PET Scan. Which for those who don’t know is similar to an MRI or CT scan. Except that it uses radioactive isotopes to find cancer in your body. This was an essential step in proceeding to a stem cell transplant. I had, had a CT after four rounds of chemo, and the results then showed a partial positive response. So we were expecting positive news at this appointment. Maybe not completely gone but hopefully a reduction of 60 or 70 percent.
So you can only imagine our devastation when the Hematologist showed us the results. Not only had the nodes not reduced since the previous scan, but they had regrown to larger than their original size plus a couple of new ones. This meant that any plans for a stem cell transplant got consigned to the round filing cabinet (rubbish bin). It also, sadly said, that six months worth of chemo had been for nothing. In fact, building a tolerance to chemo is a bad thing. We had stayed home or only travelled short distances in the motorhome, hoping that the sacrifices made during this time would be rewarded in the summer. When with treatment finished, we would be free to explore NZ again.
A new plan needed to be made. This would start with a biopsy (which they did last Wednesday.) to show if the original Lymphoma was still present or if it had transformed into something else. Follicular Lymphoma is one of the few cancers that can change. It goes from what’s called an indolent lymphoma or slow-growing cancer to one that’s much more aggressive. At the time of writing, I don’t have the results for this yet. Regardless of the outcome of the biopsy, I now need to have further rounds of chemo to try and get the cancer under control. One of the many lumps, located above the aortic arch, close to the heart is the size of a tennis ball.
After a few rounds of a much more aggressive form of chemotherapy, I will have another PET Scan. If the results of this are positive, they will look to undertake a different type of stem cell transplant. The original transplant was going to harvest my own stem cell but, this is no longer possible. The new transplant will hopefully find a match with one of my two brothers. Otherwise, there is an international register of donors. The only real problem with this is that after a month in the hospital. There is a 1 in 5 chance of not coming back out the hospital’s front door. Even if you do make it, the recovery process takes around a year.
All of this got me thinking about life, and it’s choices. We all go through life with both good and bad things happening to us. It’s a bit like a long corridor with death at the end. On the right-hand side are doors that open to a new path and a different outcome. Of course, this new corridor still has the grim reaper at the end, just that life takes a different course. A bit like when I was a kid at school in England and started to hang out with the wrong crowd. Then the right-hand door opened, dad got a new job in New Zealand, and my life changed for the better. Of course, it was a very special door that opened the day, I met Sarah. Just as special was the day, each door opened with the birth of our three sons. Or when I made the decision to open a car and truck rental business that provided well for our family.
Then there are the doors on the left that lead to outcomes that aren’t so desirable. Like, again, back in England when I fell through winter ice on the pond and almost drowned. Thankfully someone reached through that door and pulled me back onto the correct corridor. Or in my early twenties after a heavy night drinking at a singles night, I tried to drive home. The car finished upside down on someones front lawn at 2 am. Again someone reached through that door and pulled me out of the vehicle. Or later in life when a 3 phase machine exploded, blowing me backwards after I turned it on. Or when things went wrong with my first business causing, very tough times in the family.
All through life things happen as we test doors on both sides of the corridor. Sometimes you might open a door on the right hand side to step into a new life. Only to discover that there are far more left hand doors in this life than the last. Maybe you took on a very dangerous job or made lifestyle choices that weren’t properly thought out. Of course there are also the doors that open to new opportunities that seem to lead to nothing but right hand doors.
The point is that most of us go through life, expecting that the final door at the end of the corridor is still quite distant. So when Sarah and I had the meeting on Tuesday, it seemed like that door was now getting awfully close. After a couple of days to reflect on the news, I have decided that I need to borrow a few tools to make a few doors of my own. Sure the potential outcome might be looking grim. But I figure if I cut five doors into the right-hand side of the corridor where I am standing now. I will have a good chance of opening one that leads to recovery. Only one of those new doors will have a blank wall behind it. After all, I have all the other doors that I have opened at various times in my life that drive the memories that will help make the correct decision.
Sometimes there is both a left and right hand door that are intermingled. So it was in 2016 when I was first diagnosed with Follicular Lymphoma (on Sarah’s birthday). Eventually this led to us selling the business, buying a new motorhome and travelling New Zealand. Making new friendships and opening all sorts of new doors.
I haven’t really written this for anyone except myself. But if you do read my blog and you wonder about the progress that I am making with my Lymphoma then you might have found that interesting.
To view the places we have visited click here to see them on Google maps. You can then click the link to read the blog about that area.
To view our Campground Ratings system, that we have done for places we have stayed click here
12 thoughts on “The Long Corridor”
Hi John, Read your blog and what can i say, thinking of you and Sarah and let hope it positive news. Was very touched with your blog and thank you for being so open and sharing your journey. Have enjoyed your blogs in the past, let’s hope there are many more in the future.
Thank-you for your honest, interesting and thought provoking blog posts.
I wish you and Sarah all the best and hope that the doors that you are opening moving forward, keep you and your family together as long as possible through this difficult battle and journey.
Thankyou so much for sharing your health experience, it really makes a difference in terms of gaining insight and breaking out of one’s own coccoon. I loved the use of such a useful visual descriptor. Wishing you and Sarah the very best along this journey.
Hi, I read all your blog from start to finish. I really enjoy reading about all your travels in the motorhome. I wish you all the very best when you get your test results and hopefully they will be good news. You have a wonderful attitude to life which I admire. All the very best to you and your wife Sarah.
Audrey Welsby. Gold Coast Australia.
I am hoping that you have a good result John. I do enjoy your site and sharing of your journey. I have saved all your posts for reference as my wife and I will start our lives next year living in a Motorhome being built at the moment.Thank you for sharing we love the read and research.
I would love to meet you at sometime in your continued journey around this beautiful country.
Thank you again and keep us posted on your test results and plan of attack.
I enjoy reading your posts. Keep positive and keep looking for new doors.
We have always enjoyed your tales of your motorhome journeys locations and descriptions of places and are now feeling for you as you share your health journey which is taking you on a tougher journey for you and your family. We found of interest your reference to the doorways as we have always referred ours to the chapters in our book of life. Thank you for your contribution of sharing. Long May it continue.
Very best wishes
Prue and Stu
To John and Sarah, so sorry to read about this setback in your current medical journey. Thinking of you both, and hoping like anything the right door opens up, one of your new ones perhaps.
Robin and Jenny, Romany Rambler.
Very informative post. Hoping that the doors open and your health is returned. It’s hard to find the positive sometimes but keep learning and trying. I enjoy your posts and they give me inspiration for new ways to live and ideas for new journeys in our campervan. Like you campervan life has been a highlight for us and each new venture brings excitement, wonderful vistas and always new friends and things to explore. Keep up the fight.
John and Sarah, we are so sorry to hear this news. We think about you often and I can’t even count the times we have said, we must catch up with you guys. Sorry we haven’t done so yet but please know we are always thinking of you and hoping for good news. Xxx. Take care
Nikki and James
Take care thinking of you hope for a good outcome
John, a very poignant post but we do have a sledge hammer you can use to bust down some of those doors! Keep trying those doors, some of them you only need to peek through to know they are not the right door and you can close them and move on to the next. Kia Kaha.