With 20/20 hindsight, I suppose the early warning signs were there in November. I'd had my annual checkup in late October (all Aok, bloods, PSA etc perfect) just a BCC was identified on the bridge of my nose. When I woke from the GA for its removal, I commented that I had some pain in my ribs.
This was diagnosed as costochondritis and pain faded after a couple of weeks.
The last week before Christmas was frantic and that last Saturday had me in consult non-stop from 9:00am to 4:00pm. As the day progressed, I developed a burning pain in my lower back - hah, just getting old.
By Monday Christmas Eve I could barely walk and started chewing Panadols at a great rate of knots. Rang nurse on call who said keep going on analgesics and check with your doctor after Christmas - probably just a disk problem.
I spent Christmas Day lying on the bedroom floor, screaming in excruciating pain..
27th December rolled around, off to the local doctor (as my own had closed) who filled me up with Targin (useless as "cough on a bull") and sent me for an lumbar MRI. Now being a vet, I looked at the MRI but couldn't see any spinal nerve entrapment: hmm not a disk problem But L2 (second lumbar vertebra) looked shorter than the others and the central area of it and L3 looked mottled: oh sh%t that's not good. My GP confirmed my fears that I had some sort of metastatic disease. Bloods followed. Also a bone scan whereupon my spine and ribs lit up like a Christmas tree.
At this stage I'd been relegated to the spare bedroom due to my yelling out in pain most of day and night in spite of Targin, short acting morphine and Panadol.
I was admitted to the Epworth for a bone marrow biopsy - this confirmed I had multiple myeloma, but the pressing issue was the excruciating low back pain. In hospital I was given IV morphine every few hours but no could no longer stand or even sit up in bed on account the pain. Radiation therapy to kill pain in L2 and L3 was instituted - moving me was an exercise in elevating pain scores to an even 10/10. Chemotherapy was also started. The non-stop 24 hour pain had me really wondering if this would be the end of me or even worse was this to be my lot in life going forward.
It took from the 3 Jan until 15 Jan before I was able to even stand albeit in great pain. Bliss I remember the first day I didn't need a bedpan, then my first shower in weeks even if it was sitting down and a nurse washing my lower half.
I was discharged on 20 Jan walking but in pain ("it'll hurt but it won't kill you!" was my haematologist's advice) and had to go back for a check scan on 23rd. Moving me onto the MRI machine caused a massive uptick in pain and I was readmitted. CT scan and MRI now revealed I had compression fractures of T12, L2, L3 with additional marked loss of bone but not fracture of T10. On top of all that a sudden spike of fever had my haematologist calling for a pulmonary angiogram: five pulmonary emboli were noted. Ultra-sounds of legs revealed a low DVT in my left calf. Great. (And scary to hear of the F1 director who died last week in Melbourne as result of PE).
It took till 15 Feb till I was able to stand and I was discharged again relatively pain-free. My myeloma appeared to be on the run with all blood tests showing me back to normal and I seemed to be suffering no ill effects from either the chemo or myeloma.
A palliative pain care specialist was called in to sort out pain management. A week of Constant Rate Infusion morphine seemed to get on top of the pain and once again I was discharged pain free and home on morphine every 8 hours.
I went well for 10 days until weekend of 2 March as the pain returned and I was admitted again 4 March. Pain meds were again rejigged. After a week in hospital, yet another uptick in pain and now I could no longer lie on my back as it felt that there was a "pebble" on the bed. So obviously further collapse of L2.
I came home this Tuesday on a combination of hydromorphone (3x strength of morphine), short acting Fentanyl and Panadol Osteo. Pain is stable and steady but gets worse as the day progresses. Sleeping is hard as I tend to roll onto my back and instantly wake in pain.
The impact on my marriage has been the most severe side effect of my disease with it crumbling at a greater rate than my lumbar vertebrae. Out-of-date wills, trust deeds and late lodgement of PAYG and BAS increased stress levels for the other half beyond her ability to cope, especially as she realised the mess I would have left if I'd died in January. She stopped visiting me in hospital as the visits always ended in arguments and me in tears. On the other hand my staff at work have been magnificent rising to the occasion, organising locums and keeping the practice going through its busiest months with little loss of income. My sons have been absolute stalwarts, my youngest who was OS whilst I was in hospital ringing me from Europe to check on my progress (or lack thereof). My best friend has been a rock, visiting me constantly and ferrying me from hospital to home to chemo as required.
So at the moment, I'm on weekly chemo as an outpatient and pain relief at home as there's not much else that can be done for my back. My myeloma has responded so well to treatment that I'm to be assessed for a stem cell transplant if my back heals enough. If this is successful, my life expectancy is significantly expanded with minimal oral chemotherapy monthly (instead of current weekly IV therapy). I'm unable/not allowed to pick up or carry anything heavier than 1kg (my laptop is an exception)and my exercise is restricted at the same time as I should spend as much time as possible standing/walking, less sitting. If I lie down for any length of time, it's 15 minutes of agony as I arise (Mrs C spins out if I try to use a bottle at night so getting up to the loo is an exercise is pain suppression) so I have to meter my water intake in the evening.
One feature of the hospital care has been the pastoral care - social workers, counsellors, psychologists and psychiatrists have all spent hours with me - whilst I was quite sanguine and accepting of my condition in spite of the pain in the first month, I don't know how I would have coped otherwise, especially in the last couple of weeks as my domestic situation caused me to fall into severe depression. Nursing staff at the Epworth-Freemasons have been fantastic: warm, caring, empathetic, encouraging, patient, conscientious, even counsellors in their own way. I tear up thinking about how they looked after me. My haematologist was a little reserved at first, but has worked out my quirky sense of humour and has become a highlight of my day when she visits. Travel talk helps as well <g!>. She explains things well and is optimistic about my chances.
I've lost 15kg which is probably a good thing - less weight for my back, but interestingly my height has dropped from 6'1" to 5'10" emphasising the collapsing and crumbling vertebrae. Thankfully there is no nervous impingement so I have no neurological deficit.
Going forward chemotherapy continues, counselling starts next week for me (then will try to persuade other half to attend) and hopefully my back will continue to improve: I'd like to be able to reduce my dependence on opioids which would indicate pain resolution.
I'd like to go back to work when I can, but realistically will not be able to pick up animals or stand bending over an operating table for hours on end. So maybe become a mentor and grand old man of the practice. Travel for this year is cancelled (another issue causing great anger in our relationship) and there is refusal to consider anything for 2020 as who knows what the personal situation will be, let alone my health.
Take home message: balance your life, you don't know what's around the corner (I went from 100% well, so I thought, to lying on a floor screaming in 3 days), keep your essential things like wills and paperwork up to date, share userids and passwords.
"There's no pockets in shrouds".
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