Acute Lymphoblastic Leukaemia – A Wife’s Perspective Part 4

The importance of family

You can read part one of this blog for Leukaemia Care here

Read part two here.

Read part three here.

Most of the time I felt like I was acting the part of someone who was coping when inside I was anything but coping. I pretended that everything was fine and tried to normalise it all as much as possible. I think that this was partly because of the kids. I remember one time crying in front of my son when he was asking me whether his daddy was going to get better. When he saw the tears he just looked at me quizzically and said, ‘What’s wrong mummy, I’ve never seen you cry before’. It was at that moment I realised that even when things were as bad as they could get, I still needed to be strong for the sake of my children. It isn’t that I don’t believe that adults should cry in front of their children, as of course I realise that this is how they learn to express their emotion, but at that time, more than anything else, they needed reassurance.

Looking back, I think that this was the start of Martin and me shutting down emotionally. It was just a way of coping which I knew wasn’t healthy, but it was the only way of getting through each day. Martin had to concentrate on his recovery both mentally and physically and I had to support him and the kids. I remember friends and family telling me to take a break from going into the hospital for the day as they could see how exhausted I was trying to keep everything going. However, they didn’t understand how much Martin relied on me going in each day even if it was just for an hour. I was the one he didn’t have to pretend for, where he could just relax and be himself. How could I expect him to be strong day after day and not offer him that small amount of support?

Once Martin had regained his strength, we had to face the dreaded bone marrow test to see whether it had all been worthwhile and Martin was finally in remission. We were both prepared for the worst, so when we heard the magic word ‘remission’ it was an amazing feeling, but we were well aware that there was still a long road ahead. Martin was at high risk of the leukaemia coming back and the doctors were not prepared to risk another cycle of intensive chemotherapy, so he was fast-tracked through to the stem cell transplant, scheduled to take place in Bristol, three hours from where we were living. We were told that Martin would need to be up there for a minimum of 100 days but that we could have access to a flat so that the kids and I could stay up there as well.

It was total madness as we had two weeks to move our lives up to Bristol with work, the kids and the pets to sort out. Some friends moved into our house and looked after the cat and guinea pigs for part of it and the dog was shipped off to another friend. I arranged to work remotely in Bristol and the kids split their time between being with me and being at home with their Grandma so that they could continue with school and pre-school. I created a spreadsheet for the kids with photos of who was looking after them on each of the 100 days so that they understood what was happening and how many days they would have to be away from me and Martin. There were also notes for Grandma on there with clubs, parties and things to remember. The whole thing was a logistical nightmare but somehow it worked.

I can only imagine how hard the stem cell transplant was for Martin, spending four weeks in an isolation room and then being massively restricted on what he could do and where we could go once he was released to the flat. I know that for me it was an incredibly lonely time and I had periods where I felt really depressed, away from family and friends and without the children for parts of it. We both knew though that it was worth the sacrifice and that it was just another challenge to get through.

One of the things that helped us to get through these darker days of treatment was by pushing the boundaries of what we were allowed to do when Martin was able, and thinking outside of the box so that we could still have fun as a family whilst Martin was undergoing treatment. This led to some of our happiest memories.

Martin would try and escape the hospital for a few hours at any opportunity whilst he was an in-patient. We would just go and have a coffee somewhere or try to go for a walk. The funniest of these outings was when he literally had a couple of hours before he had to be back on the ward, so I picked him up with the kids and we went to a local National Trust property to walk the dog. It wasn’t long into the walk that my daughter started complaining that she had a button stuck up her nose. She was never the type of girl to eat things she shouldn’t or stick things up her nose, so my response was ‘don’t be so silly, of course you haven’t stuck anything up your nose.’ I should probably point out that before we even left the house to pick Martin up she had told me that she had put a button up her nose and I had a look and told her there was nothing up there. So anyway, this carried on with her refusing to move until we got the button out. She was so resolute I started to get worried that Martin’s ‘escape’ from hospital was going to end with him having to sit in A&E whilst we got our daughter’s nose investigated. As a last resort we went to the National Trust first aiders who shone a torch up her nose and asked her to do a big blow out while they closed off one nostril. Low and behold, out pops a small blue button and a very victorious girl whose first words to me were: ‘see, I told you mummy’. We then went on to have a lovely walk and dropped Martin back to hospital with a smile on his face.

Another great day we had was about six weeks after the stem cell transplant. Martin had been discharged to the NHS flat with strict orders to stay away from crowds and not to go further than 30 minutes from the hospital in case of infection. True to form, we decided to push our luck and try to have an adventure. Longleat Safari was only an hour away and we figured Martin could come on the safari bit where we stayed in the car and then sit out for the bits where we mixed with crowds. We really shouldn’t have gone, but wow did we have a fun day. We went around the safari drive-through twice. Monkeys ate the car, we had red deer pretty much in the car and literally kicking the car door on Martin’s side as they were so cross that he wouldn’t open the window. I think it was days like this that kept us going through all of the uncertainty and awfulness of treatment.

One of the main challenges throughout Martin’s treatment was how to talk to the children. Quite early on we decided to be as truthful as possible and we quickly found a way of communicating with them about the illness. We talked about Daddy’s ‘fighters’ in his blood and how they were not working properly and that he needed the doctors to help him with their strongest medicine. We spent time reassuring them that Daddy was just unlucky and that no one else in the family would catch what he had. We bought an iPad so that they felt they had control over contacting him whilst he was an in-patient, explaining that they could contact him anytime they wanted.

I remember one of the things I was repeatedly told was that kids are resilient and that they will be fine. Whilst I agree, I also felt that this diminished what they were going through and the support that they would need to get through this as unscathed as possible. They both coped with it in their own ways – our three-year-old daughter liked to talk about it, whereas our five-year-old son kept his emotions to himself. The only time he would really open up was just before he went to sleep when he was snuggled up in bed. I therefore had to make sure that I had time to talk to him about his latest nightmares and this is where one charity’s support was invaluable. A local charity called Penhaligan Friends sent me some worry dolls when Martin was really ill so my son could tell his worries to them and place them under his pillow. This really clicked for him and he used them every night, whispering to them the things that he didn’t want to say out loud to me.

They would always choose to talk about their dad’s illness at the strangest of times. Usually when we were out for a walk or on a family day out they would announce to a complete stranger that their dad had cancer. The poor unsuspecting person who was the recipient of this information would then have to flounder around and think of an appropriate thing to say to a small child who was trying to understand why their daddy was ill.

You can read Part 5 of the blog here

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