17 September 2018
Recently, Mark got in touch to tell us his journey with cancer. Here, he takes us through the highs and lows of his journey, in his own words.
Late 2012/early 2013
I was a 51 year old man who coached his daughters football team, pretty fit, probably drank too much (not excessive), exercised and generally felt ok, except that is, for having a persistent cold, having to have a snooze regularly and night sweats, I’d taken the usual cold remedies, the cold would go then come back and so on. I put some of it down to my age and lifestyle.
I decided I’d had enough of it, you know tired of being tired etc. So I took myself off to the GP’s and explained my symptoms and frustrations, he was very good and said I’ll test you for everything. “OK” said I, “will you test me for cancer?”, “No we don’t need to do that”. I replied, “Please do, just to put my mind at rest, I lost my sister to cancer in 2012 and it would just put my mind at rest”, “go on then” said the doc, “if it puts your mind at rest”. This was January 2013, a Monday I seem to recall.
The following Friday, I received a call from the doctor who said could I come and see him today to discuss my results? “yes” says I nonchalantly, “I’ll see you about 5 pm”.
I duly arrived at the surgery, waited patiently, expecting another course of anti-biotics. I went into the room, sat down and was told I had myeloma, a type of cancer. I don’t remember much after that, my mind was a whirl. How do I tell my parents, my children, this devastating news? They’d only lost their daughter / Aunt two years before.
I was given some print outs of what the disease was, sent on my way and told they would be in touch for further tests. The one thing I do remember was that, if I Googled my disease, then to only read Macmillan or Cancer Research websites; a piece of advice I’d give to everyone.
The following weeks revolved around, no sleep, night sweats and worry. Telling my parents / children was the hardest thing I’ve ever done. I tried to play it down that it was a simple cancer, that there was nothing to worry about, I’d be ok. Deep down I knew it was going to be hard.
I had an appointment with a haematology doctor after about 10 days who explained that I had a rare disease called Waldenström’s Macroglobulenemia, WM for short. Not as life-threatening, but still serious. I would need a bone marrow biopsy to find out more, sounds simple enough I thought. So I’m having my BMB, high on gas and air to dull the pain, only to be interrupted by a doctor who would later become MY doctor (I was under his care). My IgM paraprotein was 56, should be 0 and my blood viscosity was 8.6, should be below 3, could I go to another hospital today for a Plasma transfer? “Yeah, of course I can” (not knowing what one was), but I have this thing called Positive Mental Attitude, it really helps!
Off to the next hospital, ended up having a femoral line (ouch) and lying down on a bed for about 5 hours, I can’t believe the difference it made, I was like a puppy with two tails, I felt great, but at my next appointment I was told it wouldn’t last as long as I’d hoped, maybe 2 -3 months.
At my next appointment I saw the head honcho in charge of Haematology and was asked would I consider a clinical trial? Yes I would! All was explained that it would be BCR Chemotherapy for a Cancer Research trial, 6 cycles of Chemo (4 week cycle) then hopefully all would be well, not cured, but better. “OK” says I, “we know what I have, what the treatment is, when do I start?” “Hold on there cowboy” came the reply. I started the trial in April 2013.
My first chemo went like this: CT scan, over to ward in gown provided for scan, off for chemo, booked in, told [I] didn’t need the gown, got changed, had chemo, went to book my next appointment. “Ooh” says the receptionist (who will be a life time friend) “I didn’t recognise you without your dress on!” “Do I need to wear a dress then for chemo?” “Yes” she replied!
The after effects of the chemo were puzzling, not what I was expecting, it seemed quite easy, oh how that was to change.
My next appointment the following week caused uproar on the unit, I did actually turn up wearing a dress, so they treated a six foot skinhead in a frock, much to the amusement of the staff and bewilderment of the patients, it raised a smile though. I hatched a plan that I would dress up for each appointment and duly did, including dresses, a pink tutu, a playing card and batman. It certainly cheered up a few people along the way. I still get asked “not dressing up today?” by nurses and patients alike.
As the weekly appointments continued, the effects of the chemo became greater, I think it’s called the cumulative effect. Some weeks it took five days to get over the effects, leaving me one day of feeling fine, then back to the chemo. I felt very tired, sick, lethargic, no appetite, but I knew this was a journey and it would be complete soon, stay positive was my motto, difficult to achieve at times but I’m pretty sure I managed it. It also made me happy to make others smile.
My mental state was impaired by the effects of the chemo, but I had to stay positive, I really didn’t want to let anyone down, so many people relied on me, my kids, my parents, my friends. What they depended on me for, I still have no clue, but I had a feeling they did.
I felt down, I cried (alone) no one could see how this was hurting. I’d always (well almost) have a smile and a positive word, It’s a very difficult journey, it doesn’t matter what your support network is like (mine was great), there are times when you feel alone and lost. I was never going to give up though!
I made many new friends along the way, sadly some succumbed to this awful disease, some are well into their remission. Cancer is a horrible disease, causes heartache everywhere and hopefully we can overcome it.
On with my story
At the end of my six cycles, my results were ok, but not where we wanted them to be, IgM 28 [should be 0], viscosity below 3 [below 3 is good]. We decided to “watch and wait”, to see what my body would do next. It took a while for the chemo effects to pass, and I missed going into the unit meeting people, but certainly not the chemo!
Life continued as normal as can be, regular three monthly check ups, bloods, meeting the Doc, wait, repeat.
Early 2016 I decided to run the Birmingham half marathon, my son had completed it the previous year. How hard can it be? I said, very hard. Gym three nights a week, healthy smoothies every day, I felt great. Then in the August before the run in October, I was away camping in the Gower with my new partner; something didn’t seem quite right with how I felt, you get to know your body when you’ve had chemo, good and bad signs. I shrugged it off until I returned from holiday, voiced my concerns to the hospital. I explained to my trial nurse that I was due for a blood test early October, if there’s nothing wrong, I’ll see you at the appointment, if there is something let me know.
I saw my doctor late September, my levels were increasing and there was no way I could do the run, I’d also have to have another round of chemo, my heart sank, all that training and for what?
My treatment consisted of rituximab and bendamustine, oh how I hate that combination. It makes me feel so rough.
I started my treatment early November 2016, every 4 weeks for 6 cycles. At first the chemo had the same effect as last time… not much except the tiredness, then as I progressed through the course, it all started to happen. The nausea, fatigue, restlessness, all the usual horrible side effects, I did have a couple of saving graces, firstly my partner Naomi, who travelled my journey by my side and secondly my family, especially my children, they all kept me going, oh and my positive mental attitude still hadn’t faltered …. Much.
Half way through my course of treatment at one of my regular appointments, I was told that it would be good for me to have a stem cell transplant, my first thought was, that’s ok, I’ve done this chemo lark how hard can it be? Hmm, more on that later.
I finished my sixth cycle at the end of April 2017 and expected my stem cell transplant to follow quickly… it didn’t.
Mid May I lost all of my hair on my head and body except my eyebrows (strange I thought). Hard to accept at first, even knowing that in all likeliness I would lose it anyway. I started, after a couple of days, to adapt to it, and started to rock the bald look, even getting polish for Father’s day from a very cheeky daughter.
Autologous stem cell transplant
For me to have a stem cell transplant, firstly they had to harvest my stem cells (lucky for me no donor required) [called an autologous transplant, only possible for some patients who require a stem cell transplant, hence the requirement for registered donors], but they can’t do this unless certain levels are ok, they weren’t. After a few weeks of tests and taking blood from my hand, as I only had one good vein left in my arm, they decided I needed a booster. So 7 days of injections (GSCF), self-administered in my stomach, and a final booster (plerixaflor) at the day unit, they managed to collect some cells. They needed 2,000,000, yes 2 million, which apparently is an insignificant amount. The problem was they only collected 1.3 million after me lying with a very straight arm for 6 hours. So we had to go through the same routine again: jabs in the belly, final booster on the ward, needle in one arm taking the blood to a machine (which resembles a dialysis machine) and a needle in the other arm to put the blood back in, minus the stem cells. All very painless; just uncomfortable lying still for so long.
Finally they had enough stem cells, 2.4 million of the buggers to be precise, for me to have my transplant. Four very stressful weeks later, after two attempted admissions, I finally made it into hospital. The four weeks and even the preceding few weeks were incredibly stressful, I just wanted it sorted. I knew it was a big thing and just wanted to get it over and done with, get on with my life, whatever it would be like after. I must say that my support network was amazing, but it still doesn’t stop you worrying and stressing inside, despite the brave face.
I finally went into hospital 9th August 2017, six days of intensive chemotherapy through a PICC line which I’d had fitted (not at all painful, very interesting how they fit it in fact). Twice a day, then day 7 would be a rest day then day 0: the stem cell transplant. The first six days went smoothly. On day 1, my partner’s daughter had a baby at the same hospital. I was allowed out to visit and support my partner if I bought pictures back, that was the deal with the nurses.
After six days [on] my rest day, the effects were starting to take their toll, very tired, no appetite etc. etc. Still trying to remain positive though. Then day 0, 16th August 2017. The transplanting of the cells is a pretty laborious task. You just lie there while a nurse thaws them and changes the bag when it empties. I can’t remember whether it was six or seven bags, I just remember it took most of the day, lucky for me I had a nurse with a wicked sense of humour. You don’t feel a thing, no sudden rush of anything, no feeling of greatness, nothing at all really. Except that is, the overwhelming smell of sweetcorn. Apparently it’s something to do with the preservative they use when freezing the cells. Best of all I couldn’t smell it, others told me I reeked of it.
Well post-transplant days seemed to go well at first, I was very weak from the chemo, I had to give my body time to recover, after all, I’d had my immune system completely wiped out, plus I’d lost all of my hair again, I could still rock that bald look.
After a couple of days things didn’t seem right, I went off my food, lost weight and slept for England. I had caught a para flu virus. I don’t remember anything of the following seven days, except waking at 7 pm and going straight back to sleep til seven the next morning. I’d lost all track of time, visitors said I was having hallucinations, talking gibberish and falling asleep. I remember saying to my children, “what are you doing for bank holiday?” the next thing I remember is asking the same question only to be told, “that was last week dad”. Apparently I was very poorly, how serious I don’t know, but bad enough for them to close the whole ward and allocate only one visitor per patient.
Road to recovery
I came through it, the following weeks were spent sleeping, recovering, not eating and taking oxygen. I couldn’t walk more than 10 paces without needing oxygen; this eased as the days [and] weeks passed. Finally, after a couple of false starts [I was] sent home [on the] 5th September. At home it’s easier to recover. I still needed blood tests, [was] still very weak and breathless. I’d lost about 10 kgs in weight; it’s a tough old road to travel.
Looking back at what I’ve been through and remembering ALL of the effects, tears and heartache, it wasn’t so bad (except the flu virus), millions of people have chemo daily. It’s very unpleasant, it hurts, but it’s worth it. My sister said to me before she passed away that “if you had a bad tooth, you’d go to the dentist, you hate the dentist and it’s likely to be painful, but you do get it treated and bear the pain” the same can be said for your cancer journey.
One year on from that stem cell transplant, my IgM levels are less than 0.8, my health has improved dramatically, I do need to get a little bit fitter. I’m now engaged to my soulmate and life is good.
Would I do it all again? I’d rather not, but if I had to then hell yes, it’s worth it.
Register as a blood stem cell donor
In Mark's case, he didn't need a blood stem cell donation from a stranger because his own cells were enough, other patients aren't so lucky. You can help someone in this position by registering as a blood stem cell donor today.