Building the new…. well new parts of me that is anyway!
So after the challenging start to chemo it was time to start again and I did but on a reduced regime. The shock of the diagnosis, the “It’s not bloody fair that life has thrown this at us,” and getting through our first Christmas together as a family meant I went into the new year ready to give it a go. I had no other choice, I had to fight this for the three guys at home who I love dearly and for myself. I wasn’t ready to say goodbye yet. I must say injecting yourself at home and then having intravenous and feeling pretty rubbish some days did take a toll but as always the boys and their fun and laughter got me through it.
This will be my last post for a while on solely the cancer diagnosis and how it has affected us. After this I want this to be about our family, adoption and the memories we are building. As I have said before however this has been such a humungous part of the last 12 months I can’t just ignore what has happened.
What was supposed to be 10-14 weeks of chemo turned out to only be 7 weeks as it worked so well and I was ready to get prepared for a stem cell transplant. I had researched a lot and the Myeloma UK website was an amazing source of information. What I read also scared the bejeebies out of me. So you are going to take my stem cells, freeze them, give me the heaviest chemo you can and take me back to patient zero from a stem cell and immunity process? jee-whizz!!!
I am lucky that I am quite in touch with my emotions, (some would say very in touch), and quickly found the anxiety about the process building up like a pressure cooker so I reached out for some help and had some psychotherapy sessions to plan for the process. The guy who lead me through this prep was amazing, thank you Didier. I went into the process fully informed, fully aware of what parts of the 4-5 weeks were going to be horrible and what parts I dreaded, with tools and ideas on how to cope. The main tool was to think that everything is temporary, which has really helped me through all of this. No matter how crap you are feeling, no matter how much it feels like the hardest thing to cope with you know that feeling will be temporary. It was also really hard as the boys were totally unaware of this and what it was doing to me.
My mask came out daily, that feeling as mentioned previously that you wake up, don’t really want to face the day but you have to and you slap on the mask. The one that shows a confident, happy and determined person ready to fight. The one that allows a Dad and husband to be just that. Even if deep down inside a bit of you is dying and you actually just want to crumble and cry.
The boys are too young to understand that Dad has something wrong with him that they can’t cure, that will require this intensive treatment, where he will be sick and where he will be ill and that one day it will get the better of him. My husband and I made the decision not to tell them it all in detail just now. Thinking of the immense loss, sadness and how many adults had already let them down in their lives, I didn’t want to be another one of those right now and didn’t want to cause them unnecessary worry or pain. The boys know and we discuss it frequently that I have something wrong with me that sometimes requires me to have treatment and that I can feel sick. They ask questions and I respond as honestly as I can, I never lie. Besides, whilst they can’t cure this I am not giving up early and could have plenty of time left yet!
They embraced this so well and continue to amaze me with their resilience. Each and every day.
I also allowed my tap to open when needed when I felt the pressure or emotion was building up. We all know when the pressure is building and actually allowing yourself to cry when you need to unlocks that pressure and allows for you to just cope. I still do this now and boy it does help.
During this whole period I also had this deep seated sadness and frustration. My Mum, who I am very close to, was fighting her own battle with cancer and had been for the last 3 years. She had had a rough time on some rough chemo treatments and each time I was able to get back to Cornwall to see her I would. I even went in between my chemo treatments preparing me for stem cell and little did I know that would be the last time we would see each other. This last time she was not well, she was skeletal, lethargic and was really struggling with her treatments. I helped Dad get some help and hope back. We looked to get MacMillan involved and more support locally.
Prep the for transplant resulted in more chemo and then daily mobilisation injections to stimulate excessive stem cell production ready for harvesting. Injecting yourself is just not a pleasant experience. As this was at it’s peak the pain in my bones was immense and finally they confirmed I was ready to harvest. I couldn’t wait to get them out as it was so bloody painful.
The harvesting process was fairly painless, except for the size of the bloody needles they had to use. You sit there for 5 hours and they take out your blood, centrifugally process it and skim off your plasma and stem cells into a tiny bag. It’s a true triumph of medical science and I was in awe of the process.
D-day came and it was time to go into hospital for my transplant. Knowing that you are going in for something so major, that does have the risk of death and that you will be there mainly in isolation for 4-5 weeks was daunting. What should I take with me? How well will I feel enough to do things? How bad will I feel? How will I cope being in one room for this period of time? The thoughts were going crazy in my head.
I packed what I thought I needed, gave the boys a massive hug and the husband drove me in. I held back the tears and tried to not think morbidly.
There was no time to rest or think about what was going to happen as immediately I was down in a theatre room having a Hickman line fitted into my chest for the chemo, other drugs and constant blood tests they would need to do. Next time I have to have this done and they ask if I want to have sedation I will say yes. It wasn’t a pleasant experience.
The main chemo was given that afternoon and then by that evening it felt like I had been hit by a bus. This feeling only increased over the next few days. I had to remind myself “Everything is temporary.” “Everything is temporary.” “Everything is temporary.”
As the chemo did it’s job of destroying everything in my body, good and bad – I was heading towards being neutropenic – I was feeling worse and worse. Like your whole being had been sucked out of you. I tried to put on a brave face and the boys visited me every other day. I was in an isolation room with barrier nursing so that boys had to gown up and they loved that. I longed to see them again and their little smiles and to hear what was going on outside in the real world.
Then it got bad, I was not good. The hair was coming out in clumps, I was vomiting for days and not good. Fortunately the boys had also got bored of coming to see me. After all there was only a small TV and nothing else in my room. Whilst I longed for their visits I also didn’t ant them seeing me like this, which went on for a week or so. We relied on FaceTime, pictures and me sending over videos with a brave face.
I had never felt so isolated or alone. We were meant to be a family, loving and living life and instead I had to spend 4 weeks in an isolation room and I missed them terribly.
On Friday 6th April, when I was at my worst week, my phone went at 7 am and it was my Dad. Why was he calling me this early? Maybe he knew I had been up all night ill? I answered and he told me the news that really knocked me sideways. My Mum had died in the night, losing her own battle with cancer. I couldn’t understand why as she had been admitted to simply have fluids and care, little did I know her situation had worsened that week and my family had not told me as they knew I was at my worst on the floor being sick most days. I was numb, speechless and had this gut-wrenching pain of loss and sadness. I felt so useless, so unable to help as I wasn’t even allowed to leave my room, let alone travel to Cornwall to be with my Dad. My Mum and I were very close and I felt so angry that this F**king cancer had not only stopped me from being there when she needs me most it was also stopping me from being the son I had to be.
As if having your stem cells harvested and then blasted with some crazy chemo wasn’t enough, I felt like my world had been suddenly ripped from beneath me and there was nothing I could do about it.
So that is the other big C in our family. The cancer that eventually got my Mum and meant that I lost someone so special, so wonderful and beautiful at a time when I needed her and she needed me so much.
Fortunately, my recovery went well, ok well it was on track at least, and I won’t go into more details on the process only to say it was harder than I could ever had imagined. Before I knew it I was going home and this itself set off a mild panic. After having spent 4.5 weeks in one room, with just the sound of air con and a hum of machines I was being let loose on the world again.
I still wasn’t able to travel to Cornwall, to go out in public, for fear of infection yet I was catapulted back into family life at home. In my head I couldn’t wait. In reality I felt exposed, weak, useless and scared. I felt so low, so ill and so incapable of doing anything yet I was at home with my family and two wonderful boys who just expected me to be me whilst I could hardly just climb the bloody stairs.
I felt this pit of sadness for my Mum, this sense of uselessness for my Dad, as I couldn’t be there for him yet everyone expected and wanted me to feel great now I was out of hospital.
Fortunately, the smiles, love and laughs of my husband, our lovely boys and his wonderful Mum, who stepped in to nurse me as I no longer had a Mum really did slowly but surely help me get back on track.
So there we have it, we were given a massive serving of shite in a short space of time. Cancer has hit this family hard, it has blown away any sense of life as I knew it but coming out the other side it has also given me a kick up the arse to create memories, to live life for the present, more than ever and to be grateful for each and every day.
The unit we had was changing, we were all facing new challenges but one thing was running through us, the love and fun was evident and boy did that somehow keep me smiling. My amazing husband who kept our family going, who gave me so much love and care to our amazing boys who make each and every day worth fighting for. From this moment on I was determined to make every moment count. Don’t you think we all should as nobody truly knows what is around the corner?