Finding a New Norm
We were warned that Al would probably never mountain bike again. Not only did he now have incurable cancer he was now left with the skeleton of a 65 year old that was osteoporotic. The consultant warned against any crashes, falls or tumbles due to his fragile bones. I struggled not to wrap Al in cotton wool, the idea of his crashing terrified me. I also didn’t want to hold him back, but I knew if it went wrong it would go very wrong. We talked about the pros & cons endlessly, trying to work out how realistic a ride was. He confessed to me that he had been going to the shed to sit on his bike & that it felt comfortable enough. He was like a kid before Christmas giving me the hard sell…
We left the house, Al in front of me spinning around the streets of Grantown, we swung a right & headed towards the Anagach woods, stopping at the edge of the trees. Al told me his back felt ok & that he wanted to try a fire road. Grinning from ear to ear, we cycled side by side both shedding tears of total joy. On arriving at the Old Spey bridge I had to reign in our enthusiasm levels & convince Al we should make the 2km cycle back to the house. I didn’t know how much fuel Al had in his tank & was terrified of him not making it home & the journey being negative rather than having a positive outcome.
On getting home Al plonked down on the couch & was white as a ghost, having a sugar low whitey. It was usually me having a sugar low & it amused Al. ‘Wow so that is what it feels like to be sugar low & exhausted,’ he laughed. I couldn’t believe it had taken cancer to give him his first sugar low! Many adventures Al had to put up with me floundering around with exhaustion & sugar lows. On one bike ride years earlier Al had cycled just ahead of me feeding me jelly babies every few hundred metres to get me home!
I started my usual running around fussing & worrying while he laughed at me saying he was just tired & to stop stressing. I look back now & think how crazy we were, he was only 4 months into 6 months of chemo at this point.
But it was a little victory in a really shitty time & it gave us both hope, hope there was a chance for Al to find his new norm. At this point in time he still couldn’t put on his own socks, but somehow he could ride a bike.
That night as we were falling asleep I rolled over & said to him ‘Don’t you dare go out on your bike without me!’ he gave me a cheeky grin saying ‘Of course not.” I knew it wouldn’t be long until I came home from work to find the bike at the back door……….. I could already see the cogs turning over working out how he could get his stamina built up again.
I was so proud of him to be so determined especially when he was still battling nausea , nerve pain & annoying tingling in his hands/feet from the Thalidomide.
Small spins started to became more regular & over the next few months Al built up enough stamina to hit the trails solo. It was amazing to see his confidence building again & these small bits of normality were doing him the world of good mentally & physically.
The hardest times for me were again the bloody Dexamethasone steroid days, he would hit the dick switch, becoming unstoppable with unrealistic goals. I would try & reason with him, trying not to piss on his fire, it was like talking to a brick wall, an irrational, hyperactive & argumentative brick wall that was quite frankly not my husband.
It's so hard to explain the personality change that Dex gives a person, when the Dex finished the come down would start, to the point that Al couldn’t lift his head off the kitchen table, the crying would begin & then the exhaustion kicked in. It was really tough to stay grounded when life was so all over the place emotionally, especially when it was the main cancer fighting drugs.
Seven months after being told he may not bike again he is riding up to 26km
By the time the six months of chemo were done Al had worked really hard to build up to biking 26km over a day, he was also walking up to 9km per day & had walked in the Cairngorms again, which was a huge victory. He started to drive again & rode his motor bike to the west coast for a day.
Then the spanner in the works came….
My Mother planned to come from NZ to help care for Al while we tackled his stem cell transplant. This would be a huge help when we returned home, taking some pressure off so I could get back to the café & relieve the team. The stem cell transplant was now only 6 weeks away.
The phone call came as quite a shock when my Mother phoned to say she had been to the dentist for a routine check up before travelling. The dentist had found what looked like cancer in her mouth. Tests were done & cancer was confirmed in her mouth & jaw. I was now torn, for the first time in 6 months Al was now capable/independent & on the other side of the world my Mother was needing major urgent surgery. She told me not to come, how could I not go?
I jumped on a plane bound for home while Al had his month of freedom from treatment.
Al walked, biked, rode his motorbike & did everything he could to enjoy his month. His determination to be as fit & healthy as he could be before the next hurdle was admirable on every level.
On the other-side of the globe I was struggling with my Mother who was scared & was still struggling to give up smoking & drinking before we went to Christchurch for surgery. The doctors needed to remove a bone from her leg to replace the cancerous bone in her jaw, this was serious, smoking could stop the bone & skin grafts from taking. I was a mixed bag of emotions & struggled to keep it together. I was scared for Mum. I felt a sense of responsibility for both Mum & Al. I was torn, there was no way I could let Mum go through this alone, I was missing Al & feeling overwhelmed by what was ahead of us. I was missing his month of freedom before he was about to become very ill again. The café was haemorrhaging money with reduced opening hours, reduced menus & a stretched team. Everything felt out of control.
I was consumed with anger & frustration with Mum for her lack of self care, her lying to the doctors about giving up smoking grated me. I tried my best to look after her & to be close to her, but she pushed me away unless she was drunk. It broke me, I had a husband doing everything he could to look after himself/me & a mother killing herself by choice. I felt worthless.
I went from being a team with Al to shutting down emotionally with Mum, we got through the month of hospital life, my days were spent helping clear her tracheostomy tube, wiping up green flem that came off her chest each time she coughed. I resented every cigarette she had ever smoked. We could only communicate by writing, she couldn’t speak until the swelling went down in her face & they removed the tubes. An infection struck her leg & the skin graft wasn’t taking as they had hoped, I decided to extend my stay.
Al requested Edinburgh hospital move his transplant a few weeks back so I could stay longer. I became run down with a dose of cold/flu along with some delightful impetigo in my nose, I dosed up on antibiotics, with the plan to have tests on return to Scotland. The fear of returning home with a bug when my husband was about to get his immune system nuked was a huge stress. Thankfully the antibiotics did there job & the tests all came back fine to be with Al.
Mum went to her friend to convalesce while I returned to Scotland exhausted, mentally broken & scared of the next cancer marathon that faced us.
Getting home to my hero & our amazing friends….
It was an emotional reunion at the airport. It was so bloody good to be home, being surrounded by our friends, snuggling with Jura, enjoying some time with Al while dipping my toe back into café life for a few days before we hit the road south for the stem cell transplant.
The one thing I have become so appreciative of in the past 3 years, is the amazing support we have from our incredible friends, Al’s family & our wee café team. They all keep us going on a daily basis going above & beyond in this never ending journey called life.