OUR MYELOMA MOUNTAIN: PART 4
Shit Just Got Real - From Wife to Carer
We started to get Al into a rhythm of drugs, eating, resting, walking to the garden & back, leaning on his stick with me walking alongside him. Walking seemed to be becoming more of a challenge & I was worried about the damage that was happening to Al’s back. His shoulders seemed lower on one side & he looked as though he was developing a hunch back.
Within 10 days of starting chemo, Al could no longer put his own underpants, socks or trousers on. I had to make all sorts of pillow contraptions to try & get him comfy in bed.
I got a mate to come & put handles in the shower so Al could hold himself up in the shower.
He couldn't walk to the toilet or get downstairs alone, I had to stand in front of him as he walked, holding onto my shoulders for support. Cancer was stripping a bit more of his dignity away day by day & I hated it for what it was doing to my full of life bloke.
Was this going to be our life from now on?
I was an active 37 year old living with an insanely fit husband who could no longer dress himself or walk with a plate of food or a cup of tea.
Constipation was a severe side effect of the drugs but the cancer also caused constipation, so poor Al was doomed when it came to his digestive system. Feeling really ill & bloated constipation was an ongoing daily joy, it wasn’t uncommon for him to sit on the loo for hours feeling miserable. He was severely constipated & he was in a lot of discomfort. His back was in a dreadful state with pain too. I felt so helpless I just wished I could take away some of his pain or give him back some of the confidence he was loosing by the day.
I asked if he would like me to run him a bath to ease his back. I gently tried to help him lower himself into the bath & he sighed with relief as he got in. I was delighted the hot water seemed to be easing the pain a little. He gave me a shout that he could’t lift himself out so I went to help him. He was 90 kilo of muscle & I struggled to lift him. I told him to wait while I find something to prop him up with.
I ran around the house looking for something to help lift him & found a large stock pot in the kitchen. I ran upstairs with a plan of propping it under his bum, the water had drained & he looked broken.
The pot wasn't high enough, I again told him to wait while I tried to find something else to prop him up with, but I couldn't find anything. I decided I was just going to have to heave him or get in the bath & prop him up from underneath. When I reached the bathroom I walked in to find him sitting on the side of the bath exhausted & breathless.
He began to shake so I wrapped a towel around him & put my knees to each side of his big muscled thighs, his head dropped into my chest & he started to convulse, this horrible noise coming from him like a dull groan.
I was now holding on for dear life, my legs clamped around him with my arms looped under his arm pits & around his back yelling at him to stay conscious ‘stay with me’ I yelled at him, while his wet butt cheeks slid around on the edge of the bath as his body convulsed.
I have no idea how I stopped him from sliding off. He came around & I gently got him to speak back to me, he was unaware of what had happened. I slowly got him to our bed & he lay there looking like a clammy pale shadow of himself, I was terrified & phoned the cancer hotline.
They asked if I could get him to the hospital but I said no, I was too scared to move him.
A doctor arrived at our front door, I was so happy to see a familiar face, her husband is the team leader of Cairngorm mountain rescue & I had met her at team events.
We got Al sitting up, she assessed him, asking questions & then calmly said she is going to make a phone call. She called for an ambulance & asked me to find someone to drive me to the hospital so I phoned our best mate Jamie. When shit hits the fan, I always turn to Jamie he is a 6 foot something, hard as nails guy who is actually soft as butter, he can always calm me down or just slap some sense into me.
While we waited for the ambulance & for Jamie, Al received an injection of morphine. The doctor believed he had suffered a pain seizure, linked with his blood pressure dropping from all the effort of trying to get him out of the bath.
I was in bits, Jamie & I followed the ambulance. Full of adrenaline & shit scared, I have no idea what we talked about but he managed to calm me down, I guess that’s the perks of having an ex marine for a best pal, he is absolutely the person you want around when life goes tits. We sat while they got Al stable & assessed. Jamie kept me company for hours he even managed to make me laugh at times.
I decided to stay at the hospital while they made a plan to get Al admitted to the oncology ward for further care & assessment. Jamie reluctantly headed home after teasing Al about being an attention seeker & I organised for my other bestie Queenie to come & collect me once Al was settled on the ward.
I have no memory of the rest of this day except for when Queenie arrived it was dinner time. We were asked to let Al eat so we stepped out into the corridor, I could still see Al from along the corridor & through the glass. As he lifted his hands to take the cutlery to cut into his pie, he fell side ways, he just couldn't hold himself up, couldn't even cut up his pie. It was a devastating sight. I rushed in, propped a couple of pillows around his butt & cut his pie up so he could have one hand on the bed & use the other for his fork. His eyes welled up as I tried to help him spear his lumps of pie. I said ‘it will be ok’ I didn’t really know that, but I needed Al to believe it would be.
The house felt empty, Jura was unsettled, I was unsettled. I tidied up the house, picking up the wet towels & clothes we left behind, glancing at the bath like it was an evil vessel of pain & sorrow. How I managed to hold him there I will never know. When I got up the next morning I stood in the shower feeling numb & wondering what today will bring. My thighs & body ached, I felt like I had been on a climbing expedition, everything hurt.
The week was a week of finding a pain management system, getting rid of the crippling constipation & us trying to find a new normal accepting all these joys that cancer has given Al. Al’s ongoing statement throughout this whole journey has been
“Cancer, the gift that just keeps on giving”
My days were a shit fest of driving back & forwards to the hospital, juggling the daily running of the café, paper work, book launch planning, press interviews, radio NZ interviews, BBC radio Scotland recordings, doctors rounds, showering Al all as I struggled to sleep or eat. It was like a huge anxiety driven groundhog day & just when you thought you were getting a rhythm or normality something would spring up & throw a spanner in the works.
Our mates kept us going, Jen left meals at the back door, Cameron weeded our garden, Queenie took me out for evening dog walks & handed me a tommy tippy of red wine, Beccy looked after Jura, Sue fed the cats, Sarah put the bins out & not once had I asked, they just rocked up & did stuff!
"No one can ever warn you how hard it is caring for a spouse, the responsibility of keeping everything afloat, is enormous
A CT scan was organised & then followed a MRI scan. We found out why the pain was so excruciating, Al was put on a continuous supply of morphine which helped but we both knew that this was not the solution that Al wanted.
The scan results blew our minds, proving again to me what a burly strong bloke Al is. We discovered he had 2 spinal fractures, T10 & L2 had compression fractures, L2 was badly degraded & had almost collapsed.
There was no damage to the ribs, hips or kidneys. Conversations started between consultants & the radiotherapist about targeted radiotherapy, with the aim to try relieving pain while helping with mobility. Luckily for us the radiotherapist pushed really hard to make it happen.
While Al was in hospital an occupational health nurse visited our house. Our home rapidly took on the look of a retirement home, as a large NHS van is unloaded into our rooms. Raised toilet frames dominated our bathrooms, a shower seat & metal framing was now attached to Al's side of the bed, our sofa was lifted with special feet to make it higher, we had contraptions for picking things up off the floor & putting socks on. There was talk of a hospital bed being delivered but Al put his foot down saying ‘NO! I will get my back stronger. ‘
Our house had gone from being full of outdoor kit, with a bike on a stand in the lounge that Al tinkered with in the evenings to looking like an occupational health warehouse. I didn’t care about the look, I just wanted Al to be able to cope at home but I was still shell shocked at how life could change so quickly. Al told me not to worry, that we wouldn't need all this stuff soon, I wasn’t entirely sure I believed him, but he did prove me wrong and within six months it had all gone back.
I returned to work. Queenie popped in on her lunch breaks to make sure Al had eaten, taken his meds & was ok, texting me updates so I could then try & concentrate on work.
We had about 5 days of me back at work when Al phoned to tell me he was feeling chesty & more tired than normal. On arriving home from work his temperature was high so once again we phoned the cancer help line, they told us to go to the doctors & off we trotted.
The doctor listened to his chest, took his temperature, popped a pulse oximeter onto his finger removing it & putting it on again. He felt Al’s fingers to see how cold he hands felt. The oximeter read 85 -it should be about 99.
He looked at us & said he should really be calling an ambulance to take Al to hospital. Al was having none of it & insisted he would be fine with me driving him up to Inverness. I looked at Al throwing daggers as the doctor says ‘if he gets worse on the drive, pull over & call an ambulance straight away.’
I drove him straight to the hospital where he was assessed after a 5 hour wait, there had been a massive car accident - A&E was rammed. At 1am he was moved to an isolation room. I left them to it & I found myself a room in a hotel for the night. The only room left was an accessible access room, I fell onto the bed thinking how ironic it was that even my hotel room was full of rails & accessible access equipment. There was no escaping it even for a nights kip.
Al remained there for 5 days fighting a respiratory infection. He would send me pictures of the hills & sunrises from his room, saying this is not the adventure he had planned for us & that he was sorry. He didn't need to say sorry. He didn’t create this. So every-time he apologised when he didn’t need to I added £1 to a tally because I reckoned it was the only way I was ever becoming rich!
The radiotherapy was very painful because it involved lying flat on his back on a hard table, perfectly still but as they say no pain, no gain & very quickly it proved to be life changing, with increased mobility, more stability & less pain. We started taking longer dog walks, Al started tracking his walking distance each day & pushed himself for longer distances. He began walking an average of 9km a day, dreams of riding his bike again were mentioned & we talked endlessly about whether it was a good idea or not.
Whacking great doses of Dexamethasone steroids (20 tablets a day) were given. On those days he was high as a kite and with the come downs afterwards he didn’t even have the ability to lift his head off a pillow. It was so up & down, I really struggled with him on those epic days, he was off his head, his aspirations were off the scale. Sewing became a hobby & I came home from work to discover he had spent hundreds of pounds shipping fabric from Finland, he was like a bull in a China shop.
I couldn’t reason with him at all. I had to hide the credit cards & switch cards around the house, trying to control him in a non confrontational way. I was exhausted & at my wits end, it was like living with a hyperactive Tasmanian devil on drugs. We both hated Dex, it’s a flipping horrid drug & I feel for every carer or patient who has to endure high doses of it.
I joined a myeloma support group online & was so relieved to read so many partners & carers having the same struggles with Dex giving mood swings along with erratic behaviour, it helped so such to not feel alone & have somewhere to vent.