Well I have news for you we have two “C’s” in our family and it is two big fat capital letter stinking horrible “C’s”.
Not sure where to start with this one so I am just going to put it out there. A year ago I was diagnosed with Multiple Myeloma bone marrow cancer. It came as massive shock to us all and didn’t really feel real for the first few days. After having had kidney function problems for some years my renal specialist was determined to find out why a man of my age had impaired kidney function. He decided to send off for one final test looking at light chains in my blood. I had never heard of light chains and never ever did I think or consider it could be cancer-related.
The blood results came back with a high Lambda light chain count, (I still had no bloody idea what this meant despite reading lots on it). Which frustrated me as I am normally good at absorbing new information but I suppose my mind was subconsciously blocking this information. I then had a bone marrow biopsy. Which is basically them screwing into your hip bone, whilst you are awake to take samples. It was horrific, even with gas and air.
Then the diagnosis was delivered. BOOM. “You have incurable bone marrow cancer and the average life expectancy is around 4-6 years.” What? I couldn’t comprehend what had just been said to me. It felt like a surreal moment when I was watching in from the outside thinking, this isn’t happening. This can’t be happening! Our life had just taken a massive positive step forward and we were nearly 12 months into our adoption of two wonderful boys.
Now you are telling me I might not even see them become teenagers!? My heart sank, my world ended in that one sentence and this deep seated sadness hit me hard right in the pit of my stomach. Like the biggest punch you could take. I wanted to throw up, scream, run out the room and hide. I cried so deeply it hurt. My husband was amazing, after all his life had also been totally turned upside down.
All I could think about was our wonderful family. The two little gorgeous boys who were at school oblivious to this devastating news. These boys have had so much loss and change in their life and now here was me about to deliver more pain and loss one day and it looked to be sooner than we had all hoped for.
I had a second opinion, which was recommended. Not that I was expecting a different diagnosis but just to discuss outcomes and the future. The new oncologist confirmed what it was but also said how with the right treatment, right focus and fight we could turn those 4 years into 15. It felt like he had given me my life back and I cried, happy tears this time. As happy as I could be knowing I had this disease.
My mind went into meltdown. What if this thing gets me sooner? What if the adoption is reversed as a result? What if the judge learns of my diagnosis and wants to rescind the adoption? I have learnt since that “What if’s” are pointless but at that time my head was all over the shop.
A close friend was there 100% for me the day of diagnosis, and has been since. She has been a rock. I just wanted to get out of the house and didn’t want to burst into tears when the boys came back from school. So we walked arm in arm through the park and sat on a bench. It was freezing but I didn’t care. She said something that would stay with me a long time. “ The boys have got and will have the best life with you and your husband, for however long you have. Why would anyone want to destroy that?” I knew it, but it was good to hear from someone else. I could not help but to panic however.
I won’t go into the full in’s and out’s of what happened next, just a summary so you can see just what was thrown at us but more importantly how we have coped with what has been the toughest bloody year ever.
I started chemo treatment right away. The plan was to have it three times a week for 10 weeks to then prepare me for a full stem cell transplant in the spring. I went to the hospital and had my first dose. That night at home I started hurting, bones aching and a pain that was hard to describe. I just put up with it but as the night went on the pain intensified, doing even stronger and in waves. Maybe this was what the chemo was meant to feel like. Maybe this was just something I had to out up with. So as not to disturb my husband I went into the spare room in agony. Rolling around and groaning as both the pain and the frequency of the pain increased. The gap between waves of pain was getting shorter and the pain was like nothing I have ever felt. It felt like someone was scraping the inside of my hip bones, my thigh bones and my shoulders with a large serrated knife, back and forth.
I called the Christie helpline and they said “No this was not normal and to come in immediately.” I went in, albeit in a taxi as we couldn’t contact anyone to sit with the boys. It was about 3 am. The poor taxi driver must have thought I was going to cark it on him as I had to scream each time the waves of pain came. The doctors gave me loads of painkillers and morphine and nothing took the edge off. By midday the next day the pain was subsiding but I didn’t feel well at all. Two doctors stood at the end of my bed and out loud stated “ It doesn’t look good. His kidneys have stopped working’”. To hear that, even though I was semi-conscious was the worst thing. My time might come even sooner than we had thought.
Fortunately, I recovered but it took a good 2 1/2/ weeks before I was allowed home. Would I be back fro Christmas? Our first Christmas as a family and I was not going to be there. I made it, just and was just relieved to be at home even though I had to live with a catheter for 5 days! Despite me trying to fool the boys it was connected to my stomach they soon worked out what it was connected to, much to their amusement. I didn’t however appreciate them tugging at the tube.
The boys came to visit me whilst I was in hospital, looking like the Michelin man as I had retained around 2-3 kg of extra fluid due to kidney failure. It was so lovely to see them, gave me hope, made me smile and showed them I was ok. I missed them terribly and couldn’t quite believe what was going on. I was on a heavy amount of pills and potions most days and found it a struggle. Seeing their little faces come through the door with their isolation room masks and aprons on was the highlight of my day. They even took great joy in wearing the bed pans and bottles on their heads, pretending to play the flute like south American pan pipers – until that is when I told them what the pans were for, much to their disgust but it made me chuckle.
I also missed their first ever school Christmas productions which meant so lot as our first family Christmas. Never had I wanted to be at a school Christmas production so much. Why was it that every time I watched TV that bloody BBC advert of the girl dancing at her school play and her Dad ignoring her but then getting up to help, was playing. I still can’t hear that song Symphony by Clean Bandit without transporting myself back to that isolation room in hospital and totally welling up with tears.
My husband was the amazing rock that he always is but in this case he was a massive mountain not just a rock. Coping with two demanding boys, holding down his job and finding time to come and see me, let alone his own sadness and loss that my diagnosis had given him.
Chemo was halted until after Christmas and we tried to have as normal a Christmas as possible. Starting to create our own family traditions and carrying on some of those traditions already present in our family unit. It was an immensely emotional time. Seeing these two gorgeous boys so excited about this time of year, where they had not always had Christmas celebrations in the past. Seeing their faces light up as they saw the presents under the tree on the big day and how much I wanted to hold them forever and not let go.
How much I wanted this illness not to be true and to wake up from this horrible dream. Holding back tears was hard as it was so beautiful to be together but also this deep seated sadness of thinking I just don’t know how many more of these I will have?
On reflection now, 12 months later, knowing the boys needed me, knowing they were happy, safe and loved was driving me to just get on with it all and to rise above adversity. It was bloody hard some days when my own world felt like it was crumbling away but I have this notion of wearing a mask. Some days you get up and you simply don’t want to face the world, don’t feel great but know you have no other option. The boys need you, your husband needs you. So I have learnt to get up, put on the mask, smile and try to make each and every day special. Some days the mask cracks and that’s ok but for each day like that is another day with stronger resolution to enjoy making memories.
So this was the start of the big “C” journey I have been on. More to come in future posts and more to follow on what the second big “C” is in our family. I don’t want this to become a cancer blog. It’s not, it’s about adoption, love, families, the challenges we face but at the same time I can’t ignore the impact this news has had on us. The strength it has built in our family unit as well as the desire to not let it win.
Many adopters have massive curve balls thrown at them and life can seem so cruel when it does this to us. It’s how we respond, how we carry on and ultimately how we work through these incredulous events that helps our children learn resilience, learn consistent love and help us all to make every day and second count.
To each and every adopted family that has had to face adversity all we can do is face it head on, focus on our families and create those memories.
(Myeloma is not a well known cancer – more information can be found here Myeloma UK. A great charity that has really help me and us over this last year with information and support)