A life written in pencil
This is about trying to work out what to do when you don't know what to do! It's an attempt to look back over the last 15 months of our lives with blood cancer and start to make sense of what all it has meant, felt like, involved, and changed for our family.
If you’d told me 15 months ago that I’d be writing a blog for Bloodwise as an Ambassador, I’d have said many things, mainly “what’s Bloodwise?” and “a blog on what?” Oh how times change!
My then 45yr old husband hadn’t been well on and off for a while, longer than we both care to remember to be honest. But the things that were wrong were pretty unspecific, seemingly unrelated and interspersed with periods of ‘normality’ and then they too became normal. We look back sometimes and I find myself shaking my head at how we missed ‘it’.
How we excused the increasing levels of exhaustion and fatigue even when Nige was saying he was so tired he could fall down. I don’t know how many times I heard that as a defence for his utter exhaustion and inability to be ‘present’ in his own life and in our family. He kept saying he was just getting old and I bought that for a while. Honestly, it was months before I got to thinking there was something badly wrong.
Then Nige got a cold he just couldn’t shake which wore him down further and further. He had a fall going up some stairs at work that he couldn’t explain. His heart was beating out of his chest, he was as pale as I have ever seen someone alive be (indeed he was the talk of the school gates for his colour!) and he lost weight very quickly. He turned down a couple of GP appointments as they clashed with his shifts at work (he’ll not be doing that again!) and finally attended one that suited. The doctor could see nothing wrong but ordered a full set of blood works and sent him on his way.
Ill be honest and say I think I was glad when, within a few short hours, the doctor called looking for him. Though she wouldn’t discuss it with me, she made it very clear that she needed to speak with him urgently. I explained his mobile reception at work was poor – and she in response made it clear how much I had to get him on the phone. It was like a comedy skit at this point – the dr is on the phone while I run around the house trying to find my mobile and then when I do so, I’m trying to find what I have the emergency work number stored under. All the while the doctor is hanging on the other end asking if I have it yet!
I call that number using my mobile and ask them to find Nige as a matter of urgency and get him to a phone. I hang up from that call and repeatedly try Nige on his mobile and amazingly he picks up to hear me tell him that the dr is looking for him and he has to hang up so she can call him. We’re trying to work out who is going to call who and on what number – forgetting she is on my other phone listening to all this - when the staff member comes running over and tells him his wife needs him by a phone urgently!
The doctor then spoke with Nige and told him he had to get to hospital straightaway, that he couldn’t drive and that there was no time to wait for a taxi. His boss had now arrived on the scene, immediately grabbed some keys and the comedy skit continued with a long car journey in rush hour traffic through MAJOR roadworks. Nige, at this point, was hungry and mainly concerned about missing a meal so I rustled something up and got it ready to take up to the hospital!
A+E were waiting for him. More bloods were done and it was clear that Nige was gravely ill, the demeanour of staff communicated that with every look and every action. He began to receive blood transfusions immediately. I spoke with staff privately and explained they needed to know Nige’s dad had died from AML so all the talk of blood abnormalities was taking him back to a dark place. And so it began. I was told I couldn’t stay overnight with him and returned home, alone, to spend one of the first of many ‘longest nights of my life’. I spent that night in a daze and got through it talking with my friend in the US. I have never been as grateful for the 7 hr time difference in my life!
The next day brought CT scans and a bone marrow aspirate. Nige was still in the Emergency Receiving Unit at this time and our friend (who is a nurse) told me to ask for his blood results and to check his neutrophils. I did so, saw the figure was 0.5 and asked why he wasn’t in isolation. Within 20mins he was! Staff lined up to see the man with such low blood counts and who had been working right up to admission.
We live in Scotland away from our families in Northern Ireland. If calling his brother to tell him Nige was really ill with a yet to be diagnosed blood abnormality was tough – calling his mum was worse. She’d been through this before and it must have taken her right back – only this time it was her youngest child. Within 36 hrs my parents and my mother in law had travelled over and were prepared to stay as long as was required to ensure that our young son was looked after.
I’ve always found the way his diagnosis was handled really strange. There was a nurse in the room with us who wasn’t introduced and her badge prominently read ‘Macmillan Nurse Specialist’. The doctor locked the door behind us and 10 days after hospital admission, they told us that Nige didn’t have the same blood condition as his dad. He had his own blood cancer - a bit of a hybrid form of Non Hodgkins Lymphoma which had elements of one type, a bit of another and some of another. I wrote down every word and didn’t realise until handed a tissue that the tears were running down my face. And officially our life was separated into B.C (before cancer) and W.C (with cancer).
That was 14 months and 26 days ago. It might as well be 14 yrs ago as time has seemed like an eternity. I can’t remember a life where I didn’t care so much, worry so much, feel so much pressure, subsume so much control, and I can’t remember a life where I mattered as much as my husband. Part of my life has been lost to cancer as well.
I don’t have cancer. But I fiercely love someone with cancer and that’s bloody tough. Sometimes I think it’s harder to be the carer than the cared for (indeed a close friend who has both been a person with cancer and has loved someone with cancer told me this very early on). The cared for can retreat and focus on what they need to do to cope and keep moving forward. They can put their emphasis into taking as much control as they wish – because it’s all about them.
The carer still has to see to it that clean clothes are in the drawers, fresh food is in the fridge, school packed lunches are made, toilets are cleaned and every other job that had to be done B.C. But you do them all with a 10 ton weight on your shoulders, on your chest and in your heart.
We didn’t realise that our life used to be written in pen. We didn’t realise that we thought our future was set in stone. We didn’t realise how much faith we had in, and comfort taken from, our growing old together. That together we’d watch our precious son grow up and make his own path in life. That we’d always be together. November 2015 shook that foundation and its after shocks continue.
Where are we now? 14 months of treatment hasn’t achieved remission, they’ve reclassified the kind of NHL it is (but didn’t see fit to tell us), they’ve said he hasn’t responded as they would have wished and Nige hasn’t worked since.
A blog? I could write a book on our experience with blood cancer. Who knows, maybe I will. And what a book it would be to capture our story – it would be about the choices we have made to both face the reality of this and to do it with as much meaning as possible. It would be the story of both the bravest big man and the bravest wee guy I know.