Life’s Adventures ListJanuary 11, 2023
Well Hi. Welcome to the Adventures of Gem.
My name is Gem, and in 2021 I was diagnosed with incurable blood cancer. But this isn’t a cancer blog, it’s my new personal blog, a place to document my adventures and to witter about random things, some of which might be Cancer because, y’know, apparently part of my life now. I’ve been blogging for a very long time, like, since 2007, so this is a bit of a fresh start in the blogging world from my previous blog Lipstick, Lettuce & Lycra, if blogging is even still a thing. I started writing this post for Lipstick, Lettuce & Lycra, but it just didn’t fit. So I’m taking LLL back to what it was originally, my “fitness” blog, more niche, and here I can tell my own story.
Considering how long I’ve been blogging, it feels weird that I’ve never told the story of my diagnosis in full.
As major life events go, it’s pretty major. So buckle up, guys, because I’m going to do this all in one epic post. So it’s all here. The bad back, the struggles to get help during the pandemic, the dramatic hospital admission, the diagnosis and the treatment, and maybe a bit about the future. I’ve tried to keep it as short as possible, but this is still going to be a mega post, I’m afraid!
Maybe my experience will push someone else to the Doctors surgery, or give someone hope. Or maybe it’s just a place to document the incredibly weird last year or so of my life so we can move forward. Either way, here we go.
Where it started
I was doing a home workout at the end of August 2020. I used 2 x 16kg adjustable dumbells held at shoulder height to do squats. One of them slipped in my hand and twisted me backwards.
I remember lying on the floor thinking, “shit, I’ve done something bad”, but it passed, and I got up and assumed it was a pulled muscle.
The next day I managed a fitness photoshoot with Kerry Curl, where these photos were taken. I was in pain and needed help lifting things off the floor.
3 months later, in early December, I spoke to my GP as my back hadn’t really recovered properly and I was still in pain. She referred me to a physio and I had an appointment arranged for the end of December.
During December, the pain got increasingly bad. I had to isolate for 10 days as one of my clients tested positive for Covid, and by the time I was free again running was completely unbearable. While doing pilates, I began to notice that I couldn’t push my back into the floor for abdominal exercises. It felt “lumpy”.
By Christmas Eve, I was in constant pain and struggling to walk. In desperation, I ordered a TENS machine from Amazon, which gave me some relief and awaited my Physio appointment between Christmas and New Year.
By the time I saw the Physio via a video call, the pain had eased slightly from how it was on Christmas Eve. She did a few assessments and prescribed exercises, including glute bridges and clams, hardly exercises I would struggle with usually! I also decided to start the Yoga with Adrienne 30-day challenge in January to get moving again. The Physio booked a review for 3 weeks time.
Within a week of starting the exercises, the pain came back. I persevered with them but found I couldn’t even lift my hips off the floor for glute bridges. Odd for someone who could easily do a 100kg hip thrust 6 months ago. I started to get pins and needles in my feet. I worried it was a slipped disc. No, I was convinced it was a slipped disc.
So I stopped the exercises, I stopped the yoga, and the pain eased off a little. In mid-January, I spoke to the physio over the phone for a review. I don’t think she heard a word I said. She told me to try planks if glute bridges were too much and that she would discharge me as, due to Covid, she could only see emergencies. If it wasn’t better in 3 months, I should call back.
So I vowed to manage it myself.
So I rested for a month.
I lay on the sofa and didn’t lift heavy things, and the pain subsided.
I slowly reintroduced some walking in February, and the pain didn’t worsen. I started walking to work again and carrying my rucksack with a 10kg ball in it (I’m a Personal Trainer, I don’t just carry a 10kg ball around for fun.)
I remember walking down to get my first Covid jab and thinking “Hey, this feels almost just like a normal bad back now!”.
Then, in late March, I started to get occasional spasms in my back. I eased off a bit, but by the end of March, I was back to being unable to put my socks on, fill a kettle or brush my teeth, and I was at a loss.
I tried an osteopath, he was terrified when I screamed in pain when he tried to click my back. It didn’t help.
I began to get shooting pains across my hips. I couldn’t sit on a chair without pain, so I had to eat my dinner standing up next to a cocktail cabinet. This is a jolly photo of me enjoying a pint at our local, standing next to the table, as it was too painful to sit down.
I genuinely wondered whether to bother going back to the physio. She’d been very dismissive and made me feel like I was making a bit of a fuss really, and it had been getting a bit better, you know, till it got a whole load worse. Frankly, I didn’t know what else to do, and I couldn’t go on like this, so I called and booked a follow-up.
In another video assessment, the Physio still seemed unconvinced there was anything much wrong. She asked me to bend forward, and when I said I couldn’t she told me to push through the pain. When I said I still couldn’t she told me not to do the exercises and suggested massage and acupuncture, but as these weren’t available on the NHS, it would have to be self-funded. So I obligingly got out my credit cards and booked a massage and a session with an acupuncturist.
A week or so later the Physio saw me again and finally agreed that possibly there was “some disc involvement” with my back pain but that I was making it worse by being stressed about it. She estimated that I’d be looking at a six-month-ish recovery period. Then, when I kept pushing, she reluctantly referred me for an MRI, with a warning that even if the MRI did show something it probably wasn’t causing the extreme pain and that my stress was making it worse. By this point, I felt like I was a hysterical woman making a total fuss about nothing. I played Roller Derby, I’m used to everything hurting, but I knew this was different.
A week later I called my GP crying, and she prescribed me Gabapentin for nerve pain. My MRI was now booked for the beginning of June.
I paid for osteopaths, acupuncture and several massages as well as access to a pain management app and course, but nothing helped. I’d started to get shooting pains in my legs, and then one terrifying night in late April I woke up and found I couldn’t stand properly. I had to drag myself to the bathroom with my arms.
I made another phone call to my GP in tears, and my dose of Gabapentin was increased, she also bumped my MRI up to urgent. I’d just like to state here that I love my GP and she couldn’t possibly have done any more to help me. Just so we’re clear. she deserves some kind of medal.
A few days later I received an MRI appointment for the 6th May.
So on Thursday, 6th May, I trundled up to the hospital wearing nothing metal except my watch and some nice comfy MRI clothes.
I managed to roll myself onto the scanner bed and expected to be sent home and get the results at my next GP appointment on Monday.
Suddenly the MRI tech appeared in the room and told me not to move. My L3 vertebrae had collapsed, and they suspected Cauda Equina, a condition where compressed nerves can cause paralysis and bladder and bowel issues.
They log-rolled me onto a trolley and wheeled me into A&E, where I had to lie flat and stare at the ceiling. I was sent for a standing X-ray to check the stability of my spine before finally being allowed to sit up slightly. A succession of different doctors visited who told me they needed to look for reasons for this sudden spinal collapse, and then I was admitted to a ward. My first ever overnight hospital stay.
Not going to lie. It was a bit stressful. I was scared and alone, and because of Covid, no visitors were allowed. Mr Gem bought me some clothing and had to leave it at reception.
An orthopaedic surgeon visited me and said they would likely do surgery the following week and also that there was very likely an underlying reason for the collapse, not just the accident in August. No one had said the word Cancer to me yet, and it still hadn’t crossed my mind, which is astonishing when you consider that I got a bad back after my first Half Marathon and spent half the night awake convinced it was cancer.
I was moved to another ward and a private room and allowed a visitor. Covid restrictions were still in place, so Mr Gem had to pre-book a visit, was only allowed to stay for an hour and had to wear a mask. I just wanted a hug.
There were more MRIs, CTs, X-rays and blood tests. I didn’t have surgery on Friday or Monday. On Tuesday, I was sent for a spine biopsy under General Anaesthetic, something I’ve been terrified of for years. It was, however, just a nice nap, followed by me throwing water all down my front in the recovery room because I don’t understand how straws work.
At about 2 pm, I was told I could go home once my drugs arrived. At 5 pm, I chased them up and was told I couldn’t go home as they wanted me to see an Occupational Therapist, and they’d all gone home. At this point, I had a major hissy fit and basically discharged myself.
By 9 pm, I was home eating a burger.
The Follow Up
I had an appointment with orthopaedics on the morning of the 13th of May, My 42nd birthday. By this time, I had been told something nefarious was going on. The words Plasmocytoma and Myeloma had been mentioned from my blood results, and I had read everything there was to find, so I knew it was some kind of cancer. Plasmocytoma can be curable but sometimes progresses to Myeloma. Myeloma is incurable. I was young for Myeloma, so I hoped it was probably Plasmocytoma and would go away for a very long time. I felt curiously calm about it, at least on the surface.
I was referred for a bone marrow biopsy and told no surgery would be done till they knew what the cause was. I was being discussed with fancy orthopaedic hospitals in London. I like to be complicated. I was prescribed a 2-week course of high-dose steroids to help with the pain that made me feel like crap.
In late May, I had another MRI, which involved forgetting to take off a ring and throwing it across the room in a panic because I’m an idiot. I also had a bone marrow biopsy which was like having a straw stuck in your bones and stuff sucked out. Which is basically what it is.
I went to the pub on crutches, bought a back brace, and patiently waited for someone to tell me what to do next.
In early June, I was booked in for PET/CT scan, which involved injecting me with radioactive dye and then putting me through a scanner. I had to stay away from children and pregnant ladies and patiently await the results.
Orthopaedics then booked me in for surgery again, then cancelled the surgery till the results came back. Again. Then I saw ANOTHER orthopaedic surgeon who said he didn’t want to do surgery but treat the tumour, and eventually, the bone would reform. It seems I was the subject of much-divided discussion among the orthopaedic surgeons of Norwich.
On the 10th of June, around the date I would have been having an MRI if the original Physio appointment had stood, I finally saw someone from Haematology (Haematology, not Oncology, treats Blood Cancers). My appointment ran late, and I was super tense as I waited, unable to stay seated on a chair because of back pain.
I’d worn a nice frock, one I’d bought new as bloating from the steroids already meant a lot of my clothes didn’t fit, and took extra effort with my make-up. If someone was about to tell me I had cancer, I didn’t plan to hear it wearing tracksuit bottoms.
When I finally got into the appointment, I was told that the PET scan had also shown lesions in my shoulder and coccyx rather than just an isolated spinal lesion. This meant I was officially diagnosed with Multiple Myeloma.
Multiple Myeloma is a blood cancer that causes your bone marrow to produce antibodies that are essentially useless, called M-Proteins or Paraproteins. They crowd out the useful ones, causing an increased risk of infection, and the build-up of proteins can cause kidney problems. They form lesions in the bone marrow. Normally in the axial skeleton, the spine, ribs, sternum etc. This weakens the bones and can cause fractures, like in my spine.
Multiple Myeloma is most common in people over 65. So at 42, I was very young to get such a diagnosis. It’s incurable, but it is treatable. They call it a “relapsing/remitting” cancer. So treatment leads to a remission, then at some point, up it pops again, and another treatment line will be needed to try and get it back under control. The 5-year survival rate for Myeloma is around 55%. It’s always worth remembering that the 5-year survival rate doesn’t consider age, stage at diagnosis or recent improvements in Myeloma treatment. My consultant told me I could probably expect to live another 10-15 years.
Then I went to the pub. Because healthy coping strategies are totally my thing.
I was told there might be a little wait before starting treatment, but actually, I was booked in within 10 days.
The standard first-line treatment for Myeloma at that time, for someone healthy enough to withstand it, was VTD, which stands for Velcade, Thalidomide and Dexamethasone. Then a Stem Cell Transplant to give the chance of the longest remission.
Velcade is administered twice weekly as injections into the stomach for 3 weeks, Thalidomide taken daily for 21 days, and a pretty high dose of Dexamethasone (a steroid) is taken for 4 days out of every week on the day of the Velcade injection and the day after. In week 4 you get a lovely week off. Some people might have different schedules, but this was mine.
You have about 4 months of this treatment, then prepare for the Stem Cell transplant.
I naively assumed that a few injections and some tablets meant I’d probably feel fine for most of the treatment and that it wasn’t until the transplant I’d have to stop working. I was very, very wrong. At first, it wasn’t too bad. But the longer you’re on treatment, the effects build up and get worse. I had a lot of bloating from the Steroids and gained about 3 stone. I suffered from fatigue, skin rashes, shakes and eye problems.
Occasionally I had a meltdown, such as on my second hospital visit when one of the nurses told me off for not chasing up some missing drugs, and I set fire to my bed and cried on the floor (long story), but mostly I just kept going.
Thalidomide means monthly pregnancy tests if you’re a woman under 55, and part way through, one of my tests came back “borderline”, so they withheld my treatment because of my imaginary baby. I named the imaginary baby Viognier. It was clear from the numbers that I wasn’t pregnant, but they still withheld my treatment until they dropped back to a clear negative. I still don’t know what caused the weird little hormone spike, but I found it incredibly stressful. With all the discussion over patient choice, at this point, I had none.
The numbers of Paraproteins in my blood were measured monthly. They went from 8.7, to 5.8, to 3.1, to 2.1, to 2.0, to 1.5
After induction treatment it was time to see how effective the treatment had been. Now. It’s pretty hard to express just how stressful this next step was, so take a second, close your eyes and imagine that 6 months ago, you had a bad back and were concerned about a slipped disc. Suddenly you have incurable cancer. You’ve had to give up a job you love and don’t know if you’ll ever be able to go back, and you’re looking towards a potentially life-threatening treatment in the middle of a pandemic. Then you have PET scan to check the effectiveness of your treatment so far and are told there is “some activity” in your liver and the back of your nose. No one knows what this means. It’s probably nothing, but you’ll have to have a liver MRI and another hospital visit to ENT. I did check in with Dr Google, which obviously led me to believe that my imminent demise was the only possible explanation.
Fortunately, after a panic attack in the MRI machine and a camera stuck up my nose, neither of the investigations revealed any issues. So they thought the “activity” was probably just some inflammation from the chemo. So yeah, thanks for that.
We’re getting to the end now guys…..
I had planned to keep working right up until my admission to hospital for the Stem Cell transplant, but it became increasingly clear I wasn’t going to be able to, and in November 2021, I finally stopped work, at least a month later than I should have.
An Autologous Stem Cell Transplant involves harvesting your own cells, having them sent away to be transformed into super cells, giving up high-dose chemo to kill off all your bone marrow, and then giving you your old stem cells back again.
To do this I needed to have a central line fitted. This is a line that goes into a vein in your chest so they don’t need to keep putting cannulas into veins in your arm to give drugs etc.
They decided the best day for me to have one put in was our wedding anniversary. They said it was fine for me to go away that evening, which we did, but I spent most of the evening having a total meltdown about the big bloody hole in my chest.
I then had to give myself daily injections of a growth factor that made my bone marrow produce extra cells. It caused bone pain, quite apart from being a total faff to prepare the injections, and then I spent 2 full days in an absurdly overheated hospital having my cells harvested. You have to stay still, attached to a huge machine, so no toilet breaks. They pull the blood out, then a machine separates the stem cells, and they put the rest of the blood back in. It’s both very high tech, and very basic at the same time.
There are also health checks that need to be done to make sure that you are healthy enough to withstand the treatment. Stem Cell Transplant is not a thing to be undertaken lightly, so they check your bloods for random hiding infections and check your kidneys, your heart and your lungs to make sure they can withstand a beating before they give the go-ahead.
My go-ahead was given, and on the 13th December I checked into hospital, in the middle of a rising wave of Covid cases, to have my immune system entirely wiped out. Funsies! I shaved off my hair in advance because I couldn’t be dealing with hair washing and it falling out in clumps, and bought myself some comfy new pyjamas.
I was in an individual room, the risk of infection is high, so people undergoing Stem Cell Transplants are generally kept in isolation. My first room was excitingly high-tech. It was bright and light, with a fancy daylight-simulating light. Unfortunately, the reason it needed that was that the window looked onto a brick wall and had therefore been covered in reflective film to save me from the ugly sight. Personally, I’d rather have had a view of a brick wall, than no view at all, but there we go.
Day 1 I was given fluids. On day 2 I was given high-dose chemo, which immediately made me feel nauseous, and day 3 was officially Day 0. The day my stem cells were returned to my body. This was a pretty long process. First there were more fluids, then a diuretic to flush out any excess fluids and meant that I basically spent 10 minutes running back and forth to the bathroom. There were then 7 bags of cells, each needing to be defrosted and then quickly infused back into my body. The preservative used in the cells causes a distinctive “sweetcorn” smell that I couldn’t smell but other people could. It also made me feel sick. I couldn’t eat my dinner that evening. I did manage to get moved to a room with a window though, so at least I could see some trees for the next couple of weeks.
The next 2 weeks honestly kind of run into each other a bit. I was horribly nauseous, I had tablets and was put on a syringe driver of anti-nausea meds, but nothing really helped. I couldn’t eat a full meal and just grazed off of chocolate, Pringles and prepared fruit when I was feeling up to it. Plus dry toast, but not the crusts for breakfast! About 2 days before I went home they gave me a drug called Aprepitant, which actually helped resolve the nausea, so I could at least eat a little.
I spent a lot of time asleep and listening to audiobooks. One of the nurses bought me a Bluetooth speaker that also projected pretty starlight on the ceiling so I could pretend I was in a very minimal spa.
My bloods finally dropped to zero on Christmas Day, HAPPY CHRISTMAS ME! I felt pretty crap and weak. At some point I got an infection in my wisdom tooth and had to have IV antibiotics to knock that out.
My hair started falling out, even though I’d shaved it off, it came out in clumps between my fingers, and left little stubbly bits all over the place if I rubbed my head.
Finally, on the 27th, a very excited nurse came into my room to tell me my Neutrophils were over 1.0, the point when they start talking about sending you home. I had luke warm chips for tea to celebrate.
The following day on the 28th I was told I could go home. The hated central line was removed and Mr Gem came to collect me and wheeled me out into the rain for my first bit of fresh air in a fortnight.
We have 2 Pugs, and they sleep on our bed, so in the interests of infection control I spent the first month back home sleeping on a fold-out guest bed downstairs. I’d hoped to stay up on New Years Eve and treat myself to a glass of Champagne, but instead I fell asleep about 10pm, so that’s where my 2021 ended, and my recovery began.
Well, if you made it this far through my therapy session, then thank you and well done, medal for you! It felt like the most sensible place to start and something I probably needed to do to crack on and start writing again. Not telling this big chunk of the story feels like jumping into the middle of a movie. Like last week I was vintage styling, roller derby playing, gym going Gem, and suddenly I’m, well, whatever I am now. Whatever I will be, and whatever’s to come in this next chapter. Which I’m sure will be awesome, and hopefully slightly shorter. I hope you’ll come along for the ride.
I tried to keep this fairly short and sweet. It’s not about how I felt about all this, that might need an actual therapist rather than a blog post. It’s more about just having that update of my story. If you’ve rocked up here because of a Cancer diagnosis yourself then let me say I’m sorry, and do feel free to drop me a message if I can help at all!