Finding Out Which Drugs I'll Be On And What My Weeks Will Look And Feel Like As A Cancer Patient
The days following my meeting with my cancer consultant Dr. P were a bit of a whirlwind. I now had confirmed what I'd feared for a good while (which was in some ways weirdly reassuring, at least I had a known 'enemy' to focus on), and he told me that my treatment would start the very next week. So, I didn't have a lot of time if I was going to let friends and family know, make arrangements to take extended time away from work, and generally prepare myself for what was to come. There were more blood tests and another bone marrow biopsy to fit in, trips to the haematology day clinic. It was pretty full on.
Difficult Phone Calls And Messages
Anybody who knew me or had seen me at any point in the previous few months would have probably thought something wasn't right just by looking at me, and my closest family and friends knew the kind of tests I was having so they were prepared for bad news. Nevertheless, some of the conversations were tough.
I'd worked on a freelance contractor basis with a global science company for over 20 years. I was always there for them at the drop of a hat to go wherever was needed or at the very least provide some technical support for their customers. Now I needed to ask them to allow me to take a year's break (completely unpaid) whilst I went through my initial treatment. I could only keep my fingers crossed that they would be supportive.
I sat down with my wife Sue and my youngest son Daniel and went through things, trying to keep it as light and as positive as possible in tone. I rang my eldest son James who lives away from home now and did the same.
I told both my sisters, that was tough on them as we are such a small family. In a strange way I was almost glad my parents weren't still alive as I think that would have been such a difficult thing for them to process.
I messaged friends via whatsapp groups we had, really just outlining the basics. I rang a couple of my closest friends and told them over the phone which was difficult to do without emotions getting in the way. A phone call with a really close friend Ian was very hard, and I didn't really even mention the most difficult bits!
Processing Internally What It All Means
Over the previous few weeks, as it became most probable that I had multiple myeloma blood cancer, I'd spoken with nurses and consultants, been given leaflets and done bits of research online. At the time, I chose to keep most of what I was being told with regards to life expectancy and other difficult subjects to myself. I can't say that's the best way to deal with it for everyone, but it felt like it was for me.
As I've said in an earlier blog blood cancers are incurable. Chemotherapy and other treatments can suppress them and give a reasonable quality of life for a time, but the cancer is never removed or defeated and any remission is always only temporary.
With the cancer levels I had at that point I would most likely be dead in months without treatment. A pretty painful and undignified death as well. So that wasn't an option..
Even with successful treatment to suppress the cancer there was no more than a 50% chance of surviving 5 years from diagnosis with multiple myeloma, and a 30% chance of making 10 years. It's the most deadly blood cancer to get.
I don't think I told anyone that at the time to be honest, it was enough for me to have to process it without burdening anyone else. My focus 100% was to do whatever it takes to be one of the 3 in 10 who are still around after a decade.
My Treatment Protocol
I was told I'd be going on a new combination of 4 chemotherapy drugs, a cocktail that had only recently been licensed in the UK (but had been trialled successfully in the USA). I was the first patient in my hospital to be given this protocol and everyone was watching out for how it went (not least me!).
I would also be given a monthly bone strengthening infusion to help repair damage to my skeleton, and I'd need daily prophylactic tablets along with an anticoagulant injection each evening.
The complete list of drugs was;
Daratumumab - chemotherapy drug taken once a week via injection/infusion at hospital
Bortezomib - chemotherapy drug taken once a week via injection/infusion at hospital
Thalidomide - chemotherapy drug taken daily via oral tablet
Dexamethasone - chemotherapy/steroid drug taken twice weekly via oral tablets
Zometa - bone strengthening drug taken once monthly via infusion in hospital
Omeprazole - stomach lining drug taken daily via oral tablet
Aciclovir - antiviral drug taken twice daily by oral tablets
Co-trimoxazole - antibacterial drug taken daily via oral tablet
Folic acid - vitamin supplement taken daily via oral tablet
Fluconazole - antifungal drug taken daily via oral tablet
Enoxaparin - anticoagulant drug taken daily via self injection syringe
Metoclopramide - anti nausea, anti vomiting drug taken as needed
I was to have 4 cycles of chemotherapy initially, each cycle consisting of 4 weeks of treatment. I would need to attend the haematology day clinic every Tuesday for blood tests, covid swabs and meetings with the nurses. My chemotherapy day would then be every Wednesday, where I would be in the 'clean' room with other patients whilst the drugs were administered.
So, 16 weeks of drugs, and then if all had gone well we could think about having some stem cell transplant treatment in the summer (which could take a few months due to the recovery time needed post transplant), followed by 2 more cycles of 'consolidation' chemotherapy after that. The whole of 2022 was mapped out and dedicated to suppressing my cancer for as long as possible.
First Weeks Of Treatment And Getting To Know The Nurses
My first day of chemotherapy was Wednesday 16th February 2022. I'd had my bloods and swabs done in the clinic the day before and a bone marrow biopsy the day before that. I hobbled into the haematology dept with a stoop, walking with a stick, at least 10kg lighter and 10cm shorter than I was 4 months previously, probably looking about 90 years old and certainly feeling it. I couldn't drive so Sue dropped me off and picked me up later, working from home in between.
The nurses were brilliant. Watching them deal with each patient individually you could see how they adapted their manner to suit each person. My nursing team comprised of 2 nurses, L and Z, and 2 sisters, K and J. Over the ensuing year I got to know all 4 of them really well, but even from day one I could see I was in good hands.
Luckily I'm not really bothered by having needles stuck in me, and taking tablets isn't a problem either. The day went as well as it could. I had a cannula fitted, had a couple of injections directly into my stomach (one of the drugs was much more viscous than normal liquid and the injection needed to be done slowly via a big syringe with a huge needle, taking a couple of minutes to complete), took some tablets, and went through with the nurses what I needed to do for the next week with the huge bag of drugs I was given to take away with me.
Looking back to those first few weeks I was lucky with not getting too many nasty side effects. The steroids kept me awake at night, I developed a strange taste in my mouth which made some food and drink taste awful, I began to get a tingling sensation in my feet and lower legs, but I didn't get too much nausea or vomiting which was really good. My red cell and white cell blood counts were good, and after 4 weeks I had my cancer count retested. it had dropped from 26,000 in January to less than 1,000 by mid March. I cannot begin to describe in words how good that felt.
Next Time, And Please Comment, Ask Me Anything, And Subscribe For Free
In my next blog I'll try to describe how some of the side effects of the chemotherapy drugs feel, and look at what's involved in having a stem cell transplant. Thank you for reading this far, please give me any feedback you have, good or bad, so I can get better at writing these blogs, and please pass the blog details on to anyone you think might be interested in reading about blood cancers.
Peace and Love
Keith
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