My Mount Everest
Andy Burrows, 8 October 2018
There is no doubt that my fourth battle with cancer is the toughest challenge of my life.
I feel the need to make that clear. I’ll explain what makes it tough in a minute. And I’m not losing my positivity and optimism when I say this.
I guess I just feel that I often talk in such a matter-of-fact way about it all that I might give the impression that it’s not hard.
And I’m hesitant putting it this way as well, because I don’t want you to think that I’m either moaning or praising myself for dealing with such hard stuff.
There I go overthinking again!
Really, I haven’t given enough information out to enable you to judge. And so, I guess to some people, I’ve just got cancer again, I’ll despatch it again, and life will go on again.
Well, it’s not like that this time.
When I met my haematology consultant at Basingstoke Hospital on 1 August, one of the things that shook me was the number of times and different ways he emphasised how serious it is this time. He’s never done that before.
Even back in 2015, when he incorrectly told me it was high grade lymphoma and it turned out to be low grade, he didn’t go on about it as much!
Just to recap my whole cancer story in a nutshell:
Christmas Day 2009 it all started – taken into hospital with pancreatitis, which turned out to be caused by high grade, Diffuse Large B Cell Non-Hodgkin’s Lymphoma. I was treated with R-CHOP chemotherapy and well into full remission. But it meant more than a year off work.
In June 2012 I relapsed, but it was diagnosed as low grade, Follicular Non-Hodgkin’s Lymphoma. This was unexpected. Follicular Lymphoma is normally described as a non-curable, but manageable condition, rather than a life-threatening disease. I was treated with R-CVP chemotherapy, followed by two years of Rituximab “maintenance” treatment (once every two months). My stem cells were also harvested, but put in the freezer in case they were needed in the future in an autologous transplant.
In June 2015 I relapsed again with Follicular Lymphoma. This time I was treated with Bendamustine chemotherapy, followed by an autologous stem cell transplant (using my own stem cells that had been harvested late in 2012).
This year, I have relapsed with high grade Diffuse Large B Cell Lymphoma (DLBCL).
Relapse of DLBCL is unusual. Normally, in a first presentation, it is seen as a curable disease, and nowadays more than two thirds of people with DLBCL are cured with R-CHOP chemo. So, to have it a second time, eight years on, is disappointing.
It may sound strange, but it may not technically be a straightforward relapse either. One of the worrying things about the fact that Follicular Lymphoma, whilst not being aggressive or life-threatening, is not curable is that it can “transform” into a high-grade type of Lymphoma. And it had been suggested that even my original experience with DLBCL had been a transformation from an undiagnosed Follicular Lymphoma.
It probably doesn’t make any difference. Either way, treating it this time is going to be much more intense.
The treatment this time
The treatment this time around has started with R-ICE chemotherapy, which will be followed by an allogeneic (donor) stem cell transplant.
One of the things that I didn’t realise (because I hadn’t given it much thought) until I had cancer is that chemotherapy is not just one treatment. There are about 100 chemo drugs, used in several hundred combinations. And yet, because every patient is different and reacts differently to the drugs, the information is quite generic.
And I hesitate to talk in general terms about the chemo I’ve been treated with, when in reality I’m only able to tell you my experience. But I think some generalisations are possible if we accept not everyone’s experience will be exactly the same.
Sickness/nausea, fatigue and hair loss are side effects normally associated with chemo. But probably the one that is most important is the one that is unseen. And that is the risk of infection because of the impact on white blood cells. In the more aggressive chemo regimens, this is what can cause serious complications and even death.
And the risk of infection, as a side effect of the chemo, is what means that chemo patients have to observe special dietary restrictions and avoid coming into contact with people who have infections, illnesses, coughs and colds.
I’m giving you this education, by the way, only so you understand what I’m trying to get across.
Leaving aside the “conditioning” chemo that forms part of a stem cell transplant – which is the strongest possible – R-ICE is the fourth type of chemo I’ve had.
And until this time around I’d say I’ve been fortunate to “sail through” chemo. With R-CVP (which I had in 2012) and Bendamustine (which I had in 2015, and which is normally referred to as R&B if used in combination with Rituximab), I was able to continue working to an extent, didn’t have to be too careful about diet or mixing with people, and I didn’t lose my hair. I went through the treatment with no complications at all.
The R-CHOP that I had in 2010 was fairly strong, and I did lose my hair and had to give up the job I was doing at the time.
R-ICE is stronger than that. I was warned in my meeting on 1 August that not only is R-ICE stronger, but my bone marrow is now “super sensitive”. I would therefore spend a lot of time being neutropenic (low white cells) and hence at high risk from life-threatening infections. A “cycle” of R-ICE is delivered over the course of 3-4 days as an inpatient in hospital, because some of the drugs are given in lengthy 8-hour and 24-hour infusions. And I was told to expect to be neutropenic in between cycles, and to expect to be in hospital being looked after for infections during those periods.
Stem cell transplants
And then there is the stem cell transplant.
Stem cells are the cells that originate in the bone marrow, and which grow into the various types of blood cells that the human body needs. There are basically two types of stem cell transplants – the autograft (autologous stem cell transplant) and the allograft (allogeneic stem cell transplant). The autograft uses the patient’s own stem cells, harvested while the patient is in remission. The allograft uses stem cells harvested from a donor.
With lymphoma treatment, the idea behind stem cell transplants is that by giving patients new stem cells, new healthy (without lymphoma) blood cells can be generated. “Conditioning” chemo, ultra-strong chemo, is given, which kills all the white blood cells. New stem cells are then infused, which grow into healthy white cells.
The autograft is the least risky, because there is no chance of rejection. For Follicular Lymphoma, so I was told, it is also the only treatment that gives any kind of chance of a cure (around a 50% chance).
Those who read my blog during my autograft at the end of 2015 (or my book about the experience) will remember it was a tough treatment – just over three weeks in an isolation room in Southampton Hospital, chemo which made me feel very ill, followed by a slow (but quietly uneventful) recovery over six months.
This time round I am to have the allograft – the donor stem cell transplant.
By all accounts, an allograft makes an autograft look like a walk in the park. I’ve heard from those who have been through them, and from doctors and nurses working in haematology. All of them say that an allogeneic stem cell transplant is a very big deal!
For a start there’s six weeks in the isolation room, with worse chemo and other drugs to ensure the right level of donor engraftment. Lots of harsh side effects to manage.
And then there is a recovery that involves more drug treatment and at least two hospital appointments every week for several months.
And whilst I may feel up to working at home after about six months, I was told (by the transplant specialist consultant in Southampton) that they “wouldn’t allow” me to go back into public places… like offices… until 12 months after the transplant. And, given that I have to really work in an office at least some of the time if I have any kind of work, that probably puts me out of work until at least the end of 2019!
It’s a big deal
And that’s why I’m talking about this time as my Mount Everest. The chemo is the trek up to Base Camp, hard in itself, but leading to the main event, the mountain climb, the transplant.
There’s so much more detail involved. But I don’t want to lose you in it.
I guess the main point is that, compared to what I’ve faced before, this is as big and imposing and scary as Mount Everest.
It’s difficult, physically, emotionally and financially. And it’s a long haul – 18 months – to get from diagnosis to potentially feeling some sense of normality.
The R-ICE chemo I’m going through right now is tough, but it’s steady going. And it gets me to Base Camp, from which I get to take on the massive Everest-like challenge of the allograft.
One step at a time
And yet, finally, there are things that make it easier.
For a start, just like Everest, there will be a whole host of Sherpas and guides to help me through it. The nurses, the doctors, healthcare assistants, domestic assistants, caterers, physiotherapists, dieticians, and so on – I’ll be monitored, helped, comforted, so closely. And that’s not to mention the family and friends, cheering me on, praying, and offering help in whatever form they can provide.
But then I was also thinking the other day how it’s normally not good to dwell on the enormity of the situation. Once you’ve acknowledged it’s a big challenge, once you’ve done what you can to ensure you have the right plan and that risks are mitigated as far as possible, once you’ve done the “cost/benefit” analysis, the next thing to do is take the first step… and then the next… and then the next…
“One step at a time”, is something I say a lot. It’s one of the keys to reducing anxiety. One step at a time. Only one.
“Do not worry about tomorrow,” said Jesus, “for tomorrow will worry about itself. Each day has enough trouble of its own.” (Matthew 6:34)
Mount Everest or an allograft (or unemployment or any other big challenge or adversity for that matter) – each of those challenges can be faced by making a plan and then following it one step at a time – just one step, no more.
As Corrie Ten Boom, author of The Hiding Place, and survivor of a Nazi death camp, famously said, “worry does not empty tomorrow of its sorry; it empties today of its strength.”
And you want to be as strong as possible today, because today is when you live, not tomorrow!
Live in today, in the present. Focus on doing what you have to do today, giving it 100%, doing the best you can.
And enjoy it as much as possible. Life is meant to be enjoyed. And I’ve found that if you are able to give 100% to today, and leave tomorrow for tomorrow, then there is normally something each day to put a smile on your face. The sunshine, an episode of Friends, your kids, your friends, the countryside, your beloved pet dog or cat, a funny meme or video on Facebook. These are all blessings. Make space for them by living in today and not tomorrow.
And if enjoyment is not possible, do what you can – count the minutes, take painkillers, close your eyes, go to sleep… pray that tomorrow will be better. And tomorrow, do the same again!
My life motto has become, “one step at a time and keep smiling!”
How to face Mount Everest
It’s funny. My eldest son, Jacob, caught me out giving the same answer to the same question. And in so doing he proved just how ingrained this attitude is.
He asked me if I was scared. And I told him that I was just writing this blog article, and that I would be scared if I thought too much about the big mountain there is to climb. But as a series of steps it becomes more manageable.
And he said he remembers exactly what I said three years ago when he asked me the same question. I was in my isolation room in Southampton Hospital having my autograft, and he was visiting me. And he asked me whether I was scared. And I said the same thing, that I would be if I only thought about the whole thing. He remembers me saying:
“You see, today, I woke up, the nurse did my ‘obs’, I spoke to Mum on the phone, the doctors came round to check on me, I had whatever today’s chemo infusion is, I watched ‘The Walking Dead’ DVD, wrote a blog post, ate breakfast and lunch, I went on the exercise bike, and now I’m talking to you, and I’ll have dinner in a while, and then I’ll go to bed.
“And tomorrow it’ll be pretty much the same… doesn’t seem so scary when you think of it like that… one step at a time! Just one step at a time!”
Don’t miss my future blog posts
Finally, you may have noticed that Facebook and LinkedIn, and other social media, don’t always show you everything from all your friends or connections. So, if you don’t want to miss any of these blog posts, now I’ve got a reason to write some more, then I have got a mailing list that will automatically notify all subscribers of new blog posts. So, if you definitely want to see everything I post, subscribe on the mailing list.
Thanks for being interested in my journey. And always feel free to interact and let me know your thoughts.
First observation, you’re way stronger than me. I don’t think I’d have coped like you through the first battles.
Second observation, I’m trying to work out if you’re Sir Edmund Hillary or Tenzing Norgay…
Huge respect, Sir. Let me know if/how we can help.
Simon (and family)
Thank you Simon.
As Bob Marley reputedly said, “You don’t know how strong you are until strong is all you can be.”
I don’t think I’m either Sir Edmund or Tenzing. There’s nothing pioneering in what I’m doing. I guess the analogy breaks down there, because no one climbs Mount Everest to save their life!
You may say that only enhances my strength, because I have no choice but to go through this, and yet I’m still determined to fill each day with as much enjoyment, achievement and satisfaction… and the encouragement of others. But my strength (or otherwise) is not what I’m trying to portray, and yet I do want people to see that (to a larger degree than normally acknowledged) adversity does not exclude or extinguish joy and happiness.
In terms of how to help… never underestimate the power of encouraging words, and of prayer.
Looking forward to seeing you as soon as is possible!
I’d say you were Hillary and I hope your consultant is Tenzing. And behind him, there’s a team of resolute and experienced sherpas. I think it’s a really good analogy. And this is a very powerful piece of writing. Good luck, Andy.
Wow, totally amazing and heartfelt words.
I do not know how you have found the strength to update your blog & mountain with so much detail.
You have traveled this long road before & you will travel it again with many ups & downs and a smile at the end when yiu finally walk out of the hospital doors and it’s all behind you.
If you, my dear friend Su or anyone else needs anything please ask.
Thank you Cheryl. Your kind words mean a lot. 🙂
A fourth battle would probably make me crumble and wonder why. My sister had a high grade DLBCL at the end of 2015, tumours were in her nasal cavity, throat, shoulder and just breaching her skull when she began chemo. She was stage 4 and was told that in order to prevent it getting to her brain she needed aggressive chemo administered as an inpatient over four cycles, lasting almost 6 months. She did have trips home to recover so she was well enough to be attacked with chemo again, in the middle of both cycles. During this time she was neutropenic and had to take a battery of medications including injections which I administered daily. We kept things sanitised and restricted visitors and basically holed up and beat the sucker. She did contract sepsis right at the very end after thinking she was good to go and having an Indian takeaway, that nearly did the deed for her that cancer hadn’t managed and she spent 2 weeks fighting it off but made it.
She had the R-CODOX M R-IVAC regime in two cycles of two sets each which included chemo drug injections direct into spinal fluid. She had a fabulous doctor who was a whizz at administering them painlessly and my reluctant wincing attempts at hand holding ended up being the thing of jokes.
It was a tough time, she’s still not recovered from the side effects of chemotherapy now, almost 3 years on but it’s doable as you know. I don’t know you and hate that you have been served this dish in life but I do know that there are positives to come. For us it was a strengthening of our bond as sisters and a readiness of more traumatic events to come just a couple of years later but the laughter we shared in those times when the alternative was to cry, the hope we had, the fighting spirit. Fighting cancer does something to a person far beyond the disease and treatment, it touches the core of a person, I saw that happen to my sister and if nothing else you’ve had that core touched 4 times, you must be one hell of a person as a result. My best wishes for you for a full recovery.
The treatment my sister had, had the cancer on the run and gone within the first cycle but of course the second had it well and truly obliterated and we were told that it is unusual for her type of lymphoma to return so I won’t share your story with her, she has enough on her plate having lost her son recently, but at the same time I’m glad to know that it’s not always as cut and dried as that and now I can make sure she definitely doesn’t get complacent about those three monthly checks with her medical team.
I will follow your story and thank you from my heart for sharing it and taking time to document it
You’re right Andrea. “Every cloud has a silver lining” sounds so trite, but there is deep truth in it. I’d say that not just cancer, but any adversity touches the core. In my book, Facing Cancer with Faith, I say that hardship is “where the rubber hits the road”. When you are forced to dig deep you often find diamonds! And I have definitely found in each round with cancer, plus my experiences with unemployment before that, much blessing.
For a start, I have got to spend more time with my four kids in their formative years than any dad could wish for. And I look at them now, and I am so proud of all of them, and yet I know that that time was to their benefit.
And then there are precious conversations like these with people I only know through my illness… I feel truly blessed that you’ve taken the time and have felt able to share your experience and your encouragement.
Finally, very good idea not to share my story with your sister. As I said in my previous post (“Being That Guy”), telling my story is losing its value for fellow-sufferers for exactly the reasons you mention. So, all I pray is that whatever I feel led to write will be of some help to somebody somewhere!
[…] I have now arrived at Base Camp, using my Everest-climb analogy! […]
An incredible journey Andy, Let me know what i can do to help. best
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