Only 10 days until WHNCD and here is another patient story to raise awareness of the disease and how patients experience it. Shane was diagnosed with Baso-Squamous Cell Carcinoma, a variety of head and neck cancer that started on the skin. His disease has been persistent but he has risen above it each time as a result of complicated surgery (nerve grafts and gold weights) and his own strength and courage. He had a difficult path to diagnosis which goes to show that sometimes the patient is the expert.
An interesting term I have run into during my cancer journey is the term ‘a new normal’. I have heard many times that things will ‘return to normal’ after MOHS (skin) surgery or similar dermatological procedures. A ‘new normal’ was a little different.
Things like numb patches, aches and pains, bald spots and bits that are missing plus the obligatory scars that now have to be faced and worked around give us the term ‘a new normal’. Basically it’s how your body works and feels after major surgery.
My new normal has recently changed again after my last round of surgery. My morning starts with painfully stretching my left shoulder after sitting up on the side of the bed. Gradually with some basic stretching, movement returns and the pain slips away. I also have exercises to do for physiotherapy through the day that I sneakily do while I think no-one is watching; pinching my shoulder blades together and shrugs to help teach my shoulder muscles to hold up my left arm. I have even taught myself to do my exercises while driving. It is early days for this one and I will stubbornly keep using it as I always have and I fully expect it to come back.
I am reminded again of my new normal as I sip my coffee, or slurp my coffee as I cannot control the left side of my mouth. Generally I try to drink from bottles or use straws, especially in public; relieving me of the embarrassing noises and dribbles down the side of the glass or mug. Thankfully I have learned that if I take small sips, slowly, I can have a drink, so it’s not the end of the world.
Unfortunately it’s not just my mouth. I lost the use of the whole of the left side of my face when my facial nerve was removed starting behind my left ear. Through a very clever nerve graft I have a very rudimentary smile on the left side but I can’t raise my eyebrow or wink; even blinking took the addition of a gold weight to my top eyelid. One hangover of this is that occasionally my left eye ‘plays up’ and gets watery and sore and I have to keep a handkerchief nearby to wipe away the tears. Occasionally a couple of eye drops will give temporary relief and it generally goes away overnight.
My new normal has been the result of an 28 month battle with a nasty little Baso-Squamous Cell Carcinoma that started in the pre-auricular region of the left hand side of my face. A battle that could have been shortened significantly if I was listened to at the beginning.
In February 2015 I returned to live in New Zealand with my wife following in March. With me came what I thought was a slow-to-heal site of a previous (3rd time) excision for a small Squamous Cell Carcinoma on the tip of my nose. Over the next two months the wound did not heal and doubled in size. The 3rd excision on this site was unsuccessful and we were 5500 kms from my dermatologist. We contacted my previous surgeon and thankfully we were recommended into very good hands locally. April 2015 saw us face my first big skin cancer surgery.
A large portion of my nose was reconstructed using some cartilage from my ears during a Forehead Flap procedure to remove the SCC that remained after previous treatments. After this procedure had settled I was facing my first round of radiotherapy - a six week course, just to make sure there was no remaining microscopic disease in or around my nose.
Early in the radiotherapy treatment I mentioned to my oncologist that I had a very painful spot in front of my tragus (the little lump on the front of your ear) that I couldn’t sleep on. At this point there was nothing to feel or see. I was told it was nothing, it would pass.
I mentioned this again in following meetings and got the same response. During my first appointment after radiotherapy, my one month checkup, I mentioned it again. This time there was a long, thin lump that felt about an inch long running vertically in front of my ear.
It’s nothing, I got told. Couldn’t be from your nose, cancer doesn't act like that. Don't worry about it. It can’t be cancer.
At my three month check up the lump was larger again, it was visibly noticeable and about three times the diameter. My oncologist had a closer look but the answer was the same. Couldn’t be cancer. It's not doing the right thing. I had pain when pressure was put on my ear, I was having trouble chewing properly and my teeth were not lining up. Based on these symptoms I was sent for a fine needle aspiration under ultrasound - a procedure I later found out was extremely unreliable.
The results from this procedure were phoned through by my oncologist. A negative result. My symptoms had kept developing but I was told again that it was nothing to worry about.
I contacted my oncologist by phone about six weeks later to tell her that things were still progressing. The lump in front of my ear was now thicker than a pencil and painful. I was having trouble eating and my left ear was completely blocked.
Mid November 2015 I was finally sent for a surgical biopsy with a local orthodontist and the result came back positive. Baso-Squamous Cell Carcinoma. Aggressive. Ten days before Christmas 2015 I was having a parotidectomy (removal of parotid gland in front of ear) and stage two neck dissection in Southern Cross Hospital in Hamilton. This procedure left me with a scar from above my temple, down the front of my left ear, along my jawline and down my neck. I lost a lot of the control of my bottom lip on the left hand side that was mainly noticeable when I tried to smile and felt far worse than it looked.
The surgery was followed up in February 2016 with my second round of radiotherapy. A six week course of high-dose radiation from two inches above my ear down to my collar bone. I permanently lost the hair above and behind my ear and temporarily across the back of my head. My new normal gave me some very tight ringlets when the hair across the back of my head grew back, an interesting look when trying to grow long hair to cover the scars ...
My three month check up with the surgeon was a great place to be. I had been for an MRI a week prior to my appointment and I was told I was clear. I haven’t looked at the scan, I was told. But the report says you are all clear. Very good news.
It feels sore like it did before surgery, I told the surgeon. The scan is clear, was the reply. Things are settling after surgery. It’s to be expected. I walked out feeling elated. Free of the fear but hoping the painful healing would be finished soon.
The worsening pain and my chewing getting difficult plus the fact that my ear canal was closed again concerned me but I clung to the belief that it was part of the healing process. For the first time in my life I was regularly taking pain relief but it was healing pain so it was okay.
When I was taking the maximum dose of over the counter pain meds and not getting relief, waking up during the night in pain and having to take meds to go back to sleep, I decided to speak seriously to my oncologist. By this stage my chewing was worse than before surgery, my ear canal was completely blocked again and I was struggling to get relief from the constant ache. I was given a script for stronger pain meds and the investigations began again with a new MRI.
I remember the appointment with my oncologist very well. I agreed on the phone to meet face to face. I was ushered straight in and the conversation started at the business end.
You have some persistent disease. These words slammed into my ears and tore a hole through to my belly. I still had cancer. I knew from previous conversations that radiotherapy is a once-only deal for any single site and I had been given as large a serving as I could possibly receive. A dose that targeted the area where the persistent disease was found.
I was told how the surgeon had taken small margins around most of the tumour and knew he left microscopic disease in some areas. On my temporomandibular joint (TMJ) or jaw joint, he left as little disease as he could without impacting too much on the joint - a very specialised part of the skull that he tried not to adversely affect. Radiotherapy was expected to mop-up any remaining disease in the area but unfortunately it had no effect on this section of remaining tumour attached to my TMJ. The tumour had since grown and was now well into my ear canal and my TMJ including some surrounding tissue.
The conversation continued with numerous mights, maybes and ifs thrown in, all telling me that I had very few options for treatment. Radiotherapy was off the table. Chemotherapy is ineffective for this type of cancer and therefore only used palliatively. Surgery might provide an option if the tumour had not gone too far down the ear canal.
We were sent to Waikato Hospital to speak to the head and neck team about surgical options. I must commend the surgeon we spoke to at this point - he openly admitted that the required surgery, if it could be done, was beyond him and referred us up to Auckland Hospital to attend the Multidisciplinary Meeting.
First impressions of our first appointment matched expectations based on other appointments. Fill out the required forms, a quick weigh-in, and off into a room to wait, all with military efficiency. The next hour or so passed with a fast paced slowness that was tinged with apprehension and fear as we were introduced to a variety of doctors and nurses and shown the room where we would be seen by the MDM team.
The Multidisciplinary Meeting itself was extremely intimidating. We had been told what to expect and had been in the room once before but the reality of the event was overwhelming. We entered the room together but I was ushered into the chair in the front of the room, facing all the other chairs and surrounded by instruments and monitors. The view from the chair was intense - over twenty faces staring at me like a Christmas gift with the wrapping still on. Anticipation at what was to be revealed swirled through the room.
One of the doctors we met in the other room earlier stepped forward and started to address his colleagues with the symptoms I had shared with him. Questions came from various areas of the room, addressed to either myself or the doctor and the answers were met with interest, some heads dropping to write brief notes. In moments the experience passed and with a noticeable sense of relief we returned to our previous room.
Although I found the experience extremely intimidating at the time, I look back on the MDM as a very amazing process. Instead of dragging a patient from specialist to specialist, everyone is together at the one time, in the one place. Multiple patients, multiple specialists, amazing results.
Based on our MDM I was scheduled for a biopsy the following Thursday. One of the surgeons we had just met managed to squeeze me into his list. The results were as expected. The cancer was still there and I was listed for radical surgery the next Tuesday.
The plan was I would head to theatre Tuesday morning. I was going to lose my ear, my ear canal and my TMJ including a section of skull on the left hand side of my head. As part of the surgery, a full thickness skin graft from inside my left forearm would be used to rebuild the defect remaining after the removal of the skin and other tissue around the tumour. My left thigh would provide a partial thickness graft to help repair the donor site on my left forearm. Due to the extent of the surgery I would wake up in Intensive Care after being kept sedated for a time following surgery. To my great surprise I was woken after nine hours of surgery with a large dressing on the side of my face.
We have found evidence of cancer on your facial nerve and believe it to be too great a risk to leave but it is a decision you and your wife need to make.
We were devastated. The surgery was scheduled to continue Friday morning so we had two days to decide if we wanted to take the risk of the cancer found in the facial nerve spreading or loose my facial nerve and any control of the left hand side of my face, permanently.
Realistically the decision was simple; reduce the risk as far as possible by removing the nerve. Unfortunately numerous other concerns come with such a decision. The biggest is appearance. With no facial nerve the muscles in the face relax causing the corner of the mouth to droop, pulling the rest of the facial tissue down with it under the effect of gravity. Lips also stop working on that side, impairing the mouth opening for eating and sealing of the lips for drinking. The eye is also affected because the muscle used to close the eye will no longer work. Ironically the nerve controlling the opening of the eye runs from another place and is not affected so you can open your eye without issue.
Thankfully there are solutions to some of these issues. They are far from perfect but they work. A static facial sling was created from a section of tendon taken from my left ankle and used to support the left hand corner of my mouth. My left eye now closes under gravity because a small gold weight was implanted into my eyelid. During surgery a nerve graft was performed also. A section of nerve was taken from my left foot near the ankle and grafted onto my face. One branch was run to my mouth and a second was run to the corner of my eye. To this point I have had minor movement restored to my mouth and can form part of a small smile. Unfortunately this is the extent of my facial movement from my left hand side.
Sunday morning saw me released from ICU after being roused from sedation early Saturday afternoon. Twelve hours of surgery prior to the sedation had left me with an interesting new normal to face, not to mention the demons I imagine plague all surgical cancer patients; the doubts, the ticking clock, the bucket list. I recall most of my energy being eaten up trying to answer one basic and fundamental question: What if they didn’t get it all?
The world got rather dark at times trying to answer that question. How long did I have? Why me? Numerous different scenarios played out before an interesting thought came to me. What if they did get it all?
The bucket list grew. The surgeons were going for big margins. They were playing to win. It was possible. I was still afraid but I was hopeful.
Room 11 on Ward 74 was for high dependency patients and I fitted right in. For most of the first day I couldn’t see, I had a conjunctivitis infection in both eyes and could only open them for seconds at a time. I soon found myself up and about, dragging three drains and an IV drip from my bed to the TV room. My wife soon started setting goals I had to achieve: visit the TV room twice a day, leave the ward for a walk, stay off ward for an hour and things like that. Little goals that had a huge impact.
By Tuesday I was frustrated with being fed a puree diet and started to ask for at least a soft diet. My workmates had sent a fruit basket and the grapes were the best I ever tasted, I used them to show the nurses I could eat real food but the change process was slow. My wife started to smuggle scrambled eggs in from a nearby cafe for breakfast and sometimes casserole or stew for dinner. Friday of that week I was given a reprieve; I was out on ward leave, bandages and all.
The apartment my wife took me to was close to the hospital and was where she and my mother had stayed while I was in hospital. I remember how nice it was to be in a normal shower. The pleasure of a normal bed where I wasn't woken up by nurses or other patients was huge. Saturday was the highlight of my ward leave. I had Yum Cha for lunch with my wife and my dad.
Monday we returned to Ward 74 for our official discharge. Bandages were removed and wounds cleaned. Scripts were issued and we said good bye. My wife and I will never be able to thank the team on Ward 74 enough for their support, care and tolerance. Our experience of all the staff was amazing with a few going above and beyond.
It was very bittersweet to be told in May 2017 that another stay on Ward 74 was on the cards. Between check ups I had noticed a couple of lumps had appeared on my neck. One very close to my throat and the other in the muscle on the side of my neck. They were only small and not painful but I was still worried enough to mention them to my surgeon at my follow up in Auckland. I just wanted to make sure they were nothing.
I was immediately sent for a fine needle aspiration that did not produce results. A biopsy was than arranged with my local dermatological surgeon and the results came back positive. From here things went crazy: scans, appointments and another Friday morning MDM in Auckland to plan how to deal with it.
The plan to tackle these two little spots was simple but radical. The surgeons would remove all the muscle in that area of my neck and a section of skin above the lumps. The pectoral major muscle from my chest would be rotated over my collar bone to replace it and a full thickness graft from my chest would repair the skin defect. This would produce a natural look for the neck region where the tissue was removed. Side effects were that I would lose a major nerve to my shoulder, weakening my left arm and probably reducing my range of motion.
This surgery was completed on the 7th June 2017, the Wednesday following the MDM. A very fast and decisive arrangement. We were on our way home the following Wednesday after two days ward leave and another amazing stay with the caring team on Ward 74. Time to learn about yet another new normal.