It’s been a while but I have finally kicked myself into gear and written a post!! It’s a long one but every detail highlights my journey, ups and downs……
If you have been following my story, you should know that I went into remission or at least it seemed that way in May and if you are just reading my journey for the first time, I will try to explain as much as I can! I had a great clinical response to my chemotherapy and the six lesions that I had in my liver appeared to have calcified. Scans of any kind are not 100% accurate, a cancer cell is minute and can quietly start to grow again, hence, why we have to have regular blood tests and CT/MRI scans. At the time, my oncologist, Adam Nosworthy and the surgeon he works with, Professor Jose Ramos saw no reason to operate.
Over the next few months, I regained my energy after grueling fortnightly chemo and slowly reintroduced regular exercise. I saw a nutritionist as my liver had taken a hammering from treatments, so with her recommendations, I made significant changes to my diet. I will write a detailed post about my diet as I feel nutrition plays a massive role and deserves its own post! I paid close attention to my water intake (not always perfect), took the recommended supplements and sought guidance about meditation and channeling my negative thoughts…… I do not believe that I could have done anymore. Despite these changes, I couldn’t shake off this deep worry about everything. Even if cancer physically leaves your body, it is always there at the back of your mind and it will never truly be gone. When I was on regular treatments, I felt safe, the cancer was not growing and chemo gave me some control. When I became ‘free’ and out there in the big, wide world , that’s when the real fears and doubts hit me.
Fast forward to Friday 7th August and Adam’s office, after a really shitty week and anxiety through the roof and he said that the CT showed some activity in mostly two lesions (segment six of my liver), however as we were comparing CT to previous MRI, he didn’t want to confirm or deny whether it was back! My CEA (tumour) markers were not ready and I was to book an MRI for six weeks. I asked if I could have one earlier but the surgeon wanted me to wait. Sigh. Fast forward again to Wednesday 12th and I was told over the phone that my markers were at 22.8 ng/ml. The normal range is <2.5 ng/ml in an adult non-smoker and <5.0 ng/ml in a smoker. I saw Adam Friday 14th August and he said we need to move fast and he sent me for an emergency MRI Monday 17th August which confirmed that the cancer was there and the lesions had grown again.
I was referred to Professor Ramos and we (Damian and myself) had our first meet on Friday 21st August, he brought up my scan on his computer and explained that there were lesions on the the right lobe, he would remove the entire lobe and gall bladder and he drew them on a picture of the digestive system (he has a note pad of them so the patient can take away) it was comforting to visualise what he would be doing. He further explained that he would have to remove part of the left lobe and those lesions there. Initially, I think we were told I had six lesions across the liver. We were also told that he would use a sonar device to check my stomach and surrounding areas for any other tumours, if he did find any then he would be unable to operate. Prof did also say it was highly unlikely to find further tumours and his hope was to operate and give me a ‘long and happy life’! Despite his positivity, all we heard was the ‘if we find more’ and that was a heart sinker, just when you think you know so much about a subject, you are thrown a curve ball, but we did our best to stay positive and his kind words became a mantra that we still use today. ‘I will live a long and happy life’. The surgery would take around four hours and he offered to do it on Monday 24th, which meant just waiting the weekend with the uncertainty of what he had just told us. If not that day, it would have to be the following Monday, after chatting with family, we booked the surgery for the 24th, get the job done.
Monday morning came around and I had to be at the Wits Donald Gordon hospital (over the road from my oncology clinic) to check in for 7am, due to COVID there were some restrictions so Damian dropped me on Ward J and went home to Arabella (our daughter) and his Grandma. I haven’t mentioned COVID until now but as you can imagine, it was a worry but the risk of not operating outweighed contracting COVID and the hospital is a student hospital – no A&E, no COVID patients. I saw the anesthesiologist and Prof’s fellow surgeon, Dr. Nicola…..I still don’t know her surname! I won’t go into too much detail, the usual prep was done and I was in the theatre waiting area for 9am, I was there for about 15 minutes then wheeled into the theatre. It’s such a weird feeling and I did my best to stay calm with breathing, the anesthesiologist was there (only face I recognised, Prof and Dr. Nicola were not there yet) and a ton of other medical people and I was transferred onto the surgical bed. I hate needles in my hand and wrists and so I was terrified. It was over quick enough (needle or whatever it is called in wrist to monitor pulse) and he didn’t even need to count, I was out cold!
While operating, Prof found more lesions that had been visible on the scan, which further proves that they are not 100% reliable. Luckily, he was able to remove them all and he took 70% of my liver and gall bladder as mentioned earlier. While I was in theatre, Damian told me that he felt lost at home and was pacing, not knowing what to do with himself. His Grandma was there which helped him with Arabella. At 16:40 Prof called him to tell him I was OK and he explained the above information. The operation took six hours and was successful! I have no idea what time I woke up in ICU but I was heavily medicated and couldn’t come right. I was disorientated and frustrated as I wanted to feel ‘normal’. Later, I tried to read my messages (I knew they were from Damian as I have a special tone for him) but could not focus AT ALL and couldn’t read a single letter, I managed to talk briefly to Damian, as to what I said – no idea!. I do not react very well to opiates and I am borderline allergic to them, by the next morning they stopped all opiate medication. I wish I could just sleep on them but they have the opposite effect, I was also vomiting and hallucinating! I had a anesthetic tubing system (like vermicelli) around my wound for pain relief which was inserted while I was in surgery. To be honest, it’s all a blur, I just remember feeling like total shit. I do remember waking up at 4am the next day when the lady came to strip wash me!
I started physiotherapy the next morning which involved sitting upright in a chair, sounds easy but I wanted to cry after ten minutes. I asked the nurse how long I had to sit here and she said four to five hours (you must be joking), I called my physio ( I can’t remember her name but she was lovely) back and she said I could get back into bed, I had managed about 30 minutes! I tried my best to eat but had no appetite. I spent three nights in ICU and on the third night, I was at my wits end. I couldn’t sleep and was still hallucinating, it was such a horrible state. I had asked for a sleeping pill but the head ICU doctor said, my system was almost clear of opiates and he didn’t want to introduce another drug that may make things worse.
Long story short I spent three nights in ICU and by the fourth morning, the doctor said I could move to Ward J. I was so happy to be on the ward, it was so quiet and I didn’t have to squat and pee in a bed pan any more and all the leads were gone but I still had my neck cannula until I left hospital! That afternoon, Damian visited, I had missed him so much, so even though he had to sit a metre away and was wearing a mask, I was just glad he was there. I continued to have daily physio with a great guy called TJ, they carried on taking bloods every day to monitor my liver function amongst other things and Prof or Dr. Nicola visited me daily. I had a beautiful scar with several staples (clips) the nurse removed alternate staples in the hospital and I returned a couple of week later to remove the rest. By Sunday, I was allowed to go home with my drain (the one draining the bile and fluids from the empty area where the liver was removed) as well as the anesthetic system, the meds were in a ball like my old chemo ball, so I had a bag either side!
Being home with Arabella was obviously amazing and over the next couple of weeks, I rested and had follow up appointments. Prof had told me liver regeneration causes fatigue and he wasn’t wrong. During this period, I removed the ‘vermicelli’ at home myself and I had the drain removed, at the hospital, when the bag had stopped filling up. Things were going well and I thought getting the occasional chills was part of recovery. I began to feel more and more ‘off’ and I started getting severe pains in my upper back and abdomen (liver area). I arranged to see Prof, he examined me with the stethoscope and sent me across to Radiology as he was worried about my right lung. I cannot remember exactly what he said, something to do with my breathing. So, off I got to the Radiology department which is in the same hospital and I see Dr. Charles for the first time, he scanned my abdomen and chest and told me I had fluid on my right lung and diaphragm…… that day he inserted a drain into my diaphragm and drained the fluid from my lung. This was only the beginning of yet another chapter which I will continue my story in my next post….