OUR MYELOMA MOUNTAIN: PART 3
Treatment- Treatable Not Curable
I watched as Alanna our super friendly nurse took what seemed like endless vials of blood. Little did I know this was what a standard monthly set of bloods would look like from now on. We went back to the waiting room, waiting to be told when it was time to head down to the treatment room.
We slowly worked our way through the endless, fluorescent tube lit corridors to Macmillian. Al’s back was really bad, he didn’t complain but looked drawn. We waited in two of the comfy seats. Al was pale & exhausted looking. A volunteer asked if we wanted a cuppa but I felt sick. I sit watching Al drink his tea & munch on biscuits, I was panicking inside but was damn sure I wasn’t going to let it show to Al. I needed to be strong, I needed to be his rock!
We were led to the treatment room, it was totally not what I expected, I was shocked. I thought we would be in a side room on our own. Al was sat down in an arm chair alongside 8 other folks also hooked up to machines having all different types of chemo at all varying stages.
I struggled not to cry as I watched the nurse pop Als hand into a warm water bath & then skillfully place a canula into what the nurse called ‘a very lovely vein’. His infusion started, a simple 15 minutes hooked up to the machine giving him a bone strenghting drug. We were the youngest in the room until a young boy popped his head around the corner, all the nurses shrieking with delight as this wee, bald child bounded in, recieving hugs while handing out sweets to his nursing heroes.
Ladies were knitting, men doing puzzles, some folks were sleeping & one poor lady was feeling really sick in the corner. A nurse sits with another lady chatting about how she feels about losing her hair. There was a calmness throughout the room even though the nurses were working insanely hard. All you could feel was kindness, support & calm from the team.
I could’t help but look around at these faces & wonder what kind of cancer they have? How do they cope? How long have they been fighting for? Why are they more susceptible than others? Somehow it was comforting, sitting in this room with other warriors, somehow it made us feel less alone but despite that I had never felt so isolated & so scared at the same time.
A nurse sat with us, in her lap a massive bag filled to the top with packets of chemo, bloodthining, antiviral, antibiotic & antisickness drugs. She explained that there are three main drugs to get on top of the cancer but there are also a host of other drugs that need to be taken alongside the chemo drugs which prevent blood clots, sickness, constipation, virual & bacterial infections, because once the drugs start doing their job there will be more chances of infections, side effects & potential complications.
Al nodded his head while I wondered how he was taking all this in, I felt like my head was about to explode. The nurse explained the monthly chemo cycle that we would follow with a paper calendar.
Velcade: Day 1, 4, 8 & 11
Thalidomide: Day 1-28
Dexametasone: Day 1, 4, 8 & 11
Then we moved onto the list of all the other drugs on certain days, times, morning or night etc
My brain hurt. So it’s the 9th of January & day 1 is the 9th of each month. We were dropped into this technical drug taking regime, neither of us had ever really been ill or exposed taking medications & we were bamboozled. The nurse reassured us that it would become second nature soon. What drugs to take & when would become like clockwork.
Looking back on this today, she was right, it is like clockwork now. I wondered then & still now, how more elderly folks cope with this overwhelming situation & amount of information that is part of the management of this cancer.
I almost crashed the car on the roundabout when we left the hospital, my brain not functioning, I was on auto pilot. Al was stressed & upset with my lack of concentration. I was trying to hold it together but was no longer present, off in a world of ‘my husband has bloody cancer, incurable cancer & we have just spent the whole day surrounded by people fighting or living with cancer’. I felt so drained, so lost. ‘Breathe Kj, breathe’ I told myself.
We had no food in the house so Al sat in the car whilst I ran around the supermarket like some chicken with its head chopped off, randomly grabbing from shelves & feeling like my chest is going to explode. I was a bag of nerves, stressing about not taking too long because Al was in pain. He needed to start taking pills that evening, ‘shit what pills, was it before or after food? Remember to pick Jura up from Linda the dog walker. Is the café still standing? I must call Als Mum, we need to tell his brother in NZ.’ I needed to do my work emails, I had a cookbook ready to be launched! ‘I will do it all tonight’ I thought ‘once Al is asleep.’
I started to break down the drug regime, I spread the drugs out on the kitchen bench & into piles as Al read out which is which from the sheets & when he must take each one……..
Night time ones
Morning ones
Middle of the day ones
Twice a day ones
Pain relief ones
Antisickness ones
Once the drugs were sorted into manageable piles we sat & read the info pages on all of the drugs & tried to understand what they all do & what side effects we need to look out for. Al started to glaze over, exhausted.
Ok, now I felt like we were in control of the medication monster, however we were not prepared for the side effects & dramas that were about to punch us in the face in the next chapter of living with cancer.
