'The Story': Distracted delayed doctors deliberating a deadly diagnosisIt was the 4th of December 2019, when I rather stupidly misplaced my footing and flew the complete length of the stairs. This was when I first recognised my sore lower back pain for something more than the general aches and pains of my outdoor job and lifestyle. My lower spine decided to awake with absolute hostility, as I could hear myself mutter “you stupid cow” as I lied flat on face (yes... my face... I bounce) on the cold, hard wooden floor. Once again, hindsight is a wonderful thing! Over the course of December my own attempts to improve my back pain were unsuccessful and developing rather quickly. The pain would move to various places all over my spine, and frustratingly resulted in many missed social occasions and events over Christmas due to being sick and in pain.
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Given my medical history, Nick pushed for me to see a doctor and we were seen just around Christmas. Sitting in the GP waiting room, I vividly remember the white winter sun reflecting on the cold walls through the large water marked windows. It was a nice day. I looked over to Nick, and we were both very calm, quite the veterans at doctors and hospitals by now. The doctor we were sent to see was a supposed ‘back specialist’. He proceeded to ask me the usual series of diagnostic questions, prodded my spine with his lukewarm fat fingers and settled very confidently on the fact it was a pulled muscle between the ribs, originating from the fall a few weeks prior. Slightly unsatisfied with his answer, Nick reminded him of my history and despite my desperation to leave as quick as possible, I also mentioned the odder symptoms on my mind (at rest, I felt something pushing into my rib, so painful to the point I could not sleep. There was also the strange fact, the pain would travel around my back on differing days). We left with no painkillers and I was given instructions to go down to a walk-in physiotherapist and see if I improved. Due to the doctor's confidence, I was reassured for a small while and decided to look up stretches online to help with my suspected intercostal muscle pain as opposed to giving up 3 hours of my busy mornings to go down to the walk in physio. A week had passed, and my deterioration was starting to become more noticeable. I began to fear as I noticed a comparable symptom pattern to the past:
Within this week, simple tasks like driving, and picking things off the floor became even more taxing and the lack of sleep left me begging for another appointment. Nick came with me to secure my slot and we were told we were seeing a ‘back specialist’. Much to our complete dismay, it turned out to be the same doctor as before. Upon discovering that I had not actually attended the walk-in physio within the week, he was very quick to dismiss us until I went. I asked for some painkillers this time, as all the over counter medication was not touching me. As he somewhat reluctantly filled out a prescription for Naproxen, Nick asked him outright “How can we be certain this is not returned cancer?”, his evasive answer slips me, but I recall it was nonchalant, yet confident, but made Nick and I both feel paradoxically insecure. Within the next two days I went to physio and as predicted it was of little help. I was given stretches and was once again, instructed to carry on as normal. Bearing in mind normal for me at this point involved going up the gallops every other day with Tom (the horse), the general lifting and chores around horse care, puppy care and a physically demanding job as an outdoor activity instructor. Needless to say, with these new stretches and ill instructions, my degradation accelerated further as the weakness in my spine started to slowly fail me under the added pressure. Luckily (or unluckily?) I had an horrendous reaction to my usual Zoladex injection (my ongoing 28 day HRT). My abdomen was completely numb and my lower belly had gone a deep purple dotted with very bewitching black veins... it kind of looked like a map of an inverted canal system from hell. This alluring site caused me to let out a large sigh, roll my eyes and chuck my multicoloured speckled self, back to the Doc’s, 9 days later after my last pleasant visit. I managed to get an appointment with the nurse, her name was Trish and she was an absolute Rockstar. She took her time to study me, conducted multiple tests and even got a second opinion before concluding I must see a doctor the same day – she began to suspect a potential kidney issue... Trish does her job correctly, Trish noticed something abnormal was going on and conducted a series of diagnostic tests. Trish got a second opinion, Trish referred... Trish got the ball rolling... Don’t be lazy or medically negligent... be smart, be like Trish *AHEM* 2 hours later... This doctor was more reassuring than the last one, and took his time to assess the symptoms I provided. He took the steps he thought necessary, switched up my painkillers, instructed me to drop off a further urine sample and blood tests after 10 days, if it didn’t get worse beforehand, and instructed me to revisit physio in the week for another opinion. I left to go and see ‘Aunty Mel’ (my self appointed counsellor) to chew over my simultaneous dread vs relief over the possibility kidneys being the best-case scenario. Sitting behind the wheel of my car, I could feel my rooted anxieties provoke a twinge deep in my gut, the prang slowly travelled upwards and doggedly choked me until I gasped for short sharp breaths. I needed to alternate my hands from the wheel, wiping away the choke-turned tears as they relentlessly leaked down my cheeks. Something deep in my gut confessed to me this was my old enemy and it was of a different beast.
Unfortunately, by the 10 days had past my condition was so bad I failed to notice just how brittle I had become. 2 days before the next physio, I severely hurt my back in work, despite me operating under ‘as and when pain allows’ and carry on as ‘normal’ instructions from the professionals. I went to see to Tom after it and luckily, Jo was there to help me. I could barely walk... She lifted and carried everything for me. Somehow. Someway, I managed to drive home, Nick was there to greet and physically carry me out of the car when I arrived, I was borderline paralysed and tearing up with the pain. Thank god for the small mercy work was cancelled the next day due to bad weather, as I was still planning on going in.
That Monday 27th January I dropped off my urine tests and saw Trish again, she studied the results and instructed me to wait for the doctor. To our relief, Kidneys started to become the suspected cause. While I waited, I went down to physio to get that fifth opinion (such a lovely way to spend 3 hours, you do get some funny looking people in and out of there). Despite being as useful as finger In the eye, the physio tried his best; he signed me a paper for a hydro-pool and sent me on my way back to the same doctor who was waiting. Nick was with me today and was more concerned than his usual concerned self, he pressed the GP so much over the possibility of cancer that I became embarrassed and wanted to leave again - despite by now, ‘knowing’ deep down what was wrong with me. I was desperate to cling onto this ‘ostrich mode’ and fixate on the delusion of a water work issue. The doctor prescribed me antibiotics and the next step was to wait for a referral to an ultrasound scan to inspect my kidneys.
This week I became too sick to take Alaska out on his 6.30 am walks. On the morning of Wednesday 29th Nick took him out instead. He later told me he had rung his mother at 6am when he was out with the dog, he was crying and admitted his deepest fear that the cancer was back. By this point, we both knew it but it was not mentioned this day.
My body gave up and I finally collapsed on January 30th. I was finally diagnosed in Morriston A&E in the early hours. Altogether, the efforts equated to: 6 trips to 2 surgeries 2 different Physiotherapists 1 nurse (Trish) 2 occasions 1 nurse second opinion 1 Doctor 2 occasions 1 ‘Back specialist’ 2 occasions Total: Assessed 9 times in 1 month... |
A ' no holds' page about my life with incurable advanced Breast Cancer, in the hope it will give a realistic, detailed account to other young women going through the unfortunate illness.
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