This post is the second in a series of pieces describing a time related to my cancer diagnosis and treatment through both my own perspective, and that of my wife, Cathy.
Hywel
Surgery
It was April 2007, post diagnosis time, and I was told they would have to look into the matter urgently. I was scheduled for an MRI, CT Scan and an investigation under anaesthetic. A Panendoscopy is a procedure that examines the upper part of the aerodigestive tract (the swallowing and breathing part of the head and neck). It can also include inspection of the upper part of the airways, including the trachea and right and left main bronchus. This was to be my first of many general anesthetics over the coming years, and having never spent any time in hospital before I was naturally worried.
I was seen in the afternoon and taken down to theatre. I always thought that when given a general you would slowly count back from a hundred and go to sleep gradually. Wrong! I was chatting away one minute and the next waking up in recovery. The procedure took about forty five minutes and the only slight pain I had was where my tonsils were removed. I was told they would be taken out to rule out any cancer in that region. I felt well after the operation and slept well through the night. I was very sore over the next few days but gradually got better toward the end of the week.
I met up with my Consultant ten days later to discuss the results. My tonsils were fine, but unfortunately it was too late for them to be super-glued back into my throat! The rest of the biopsies didn’t show anything untoward therefore the plan was to remove the tumor and all associated spread. I was to have a Radical Neck Dissection. A phrase I had never heard but was to be imprinted in my brain over the next few weeks. My meeting took place on the Wednesday and my operation was scheduled for the following Monday. I asked where I was on the list that day. The answer was 'you are the list'.
The operation would take seven to eight hours. Basically, the purpose of a radical neck dissection is to remove lymph nodes and other structures in the head and neck that are likely or known to be malignant. Variations on neck dissections exist, depending on the extent of the cancer. A radical neck dissection removes the most tissue. It is performed when the cancer has spread widely in the neck. As part of this operation I would also lose the sternocleidomastoid muscle (one of the muscles that functions to flex the head), internal jugular (neck) vein, submandibular gland (one of the salivary glands), and the spinal accessory nerve (a nerve that helps control speech, swallowing, and certain movements of the head and neck). This was a major job.
I went in Sunday night as my operation was scheduled for first thing Monday morning. I slept well and was awake by 7am. I was taken down to theatre around 8am, and Cathy walked down beside me, saying goodbye before I entered the anesthetic room. The staff all said hello, as they recognised me from two weeks previously. Same drill as before although I was given a different anesthetic as my operation was a lot longer this time. The last thing I remember saying to myself is goodbye neck.
Time stood still for the next eight hours. I remember vaguely waking up in recovery and actually felt quite good. By the time I was up in the ward I was chatting away and felt rather hungry. The consultant came up and said that everything went well and it was all about recovering now.
I have always enjoyed horror films and when I was a child use to lap up all the old Hammer Horrors eagerly. The first time I looked in the mirror I looked exactly like an extra from one of those films. The shock hit me so hard I could hardly believe what I was looking at. I had sixty staples starting at the back of my ear following a meandering line finishing across the middle of my neck. My face had dropped down one side and it all looked horrific. I had tubes and drains hanging out of my neck and arms. I had a catheter as well so I looked like a Saturday shopper, but instead of bags, tubes full of various liquids hung off me!
I slept poorly that first night. I had a morphine pump to alleviate pain and it was giving me a blinding headache. In the end I had to have some painkillers to alleviate the effect of the morphine. Over the next few days I gradually got better, although my neck hurt quite a bit. In hospital I befriended a 40 year old guy who'd had a laryngectomy. Awful for someone so young to have to go through that. We hit it off almost immediately. Now two people who get along is fine, but put some surgical intervention there and you have what I'd call a comedy act. I looked like Frankenstein; my friend couldn’t speak and had to write everything down. At breakfast I was trying to spoon cereal into my mouth whilst dodging bags of blood and urine, while his cereal eating capabilities were challenged by milk dripping from the hole in his throat. Under the circumstance it should have been a serious situation but we laughed all the time. We use to watch films together on the Ward, and before long sister use to comment, “those pair are at it again”.
We soon got bored with the ward and decided one sunny April morning to go outside and soak up the sunshine. Half way out in the corridor and a voice boomed, “we are not responsible for you if you leave this ward.” Yadda yadda blah blah I heard as we wandered off into the sunshine, dragging our trolleys with drips and assorted paraphernalia. We sat outside on a bench and ‘conversations’ consisted of me pointing things out and my colleague writing down his reply. After a while we noticed people either staring at us or looking the other way. The reason was obvious - we both had drip trolleys by our side, various bags containing various liquids hanging from our necks, as well as stapled, bandaged skin. People felt awkward but I wasn’t about to move and we were enjoying our brief foray into the real world whilst lapping up the sunshine.
I was beginning to feel better towards Thursday and determined to come out of hospital on Friday. The impending bank holiday Monday meant either I was discharged on the Friday or I would have to wait until the following Tuesday. I was determined to come out on the Friday. I had a drain placed under the skin to collect any serous fluid or blood that would accumulate and this needed to have slowed before they released me. They measured the amount of fluid every day and this would be an indication as to when it would be safe to let me go.
Well Friday came and I went home with a huge sigh of relief. It would take some two months to really recover from the surgery. Facially I have done very well with little noticeable effect of the drooping side. My neck is very stiff as it comprises mostly of scar tissue but I recovered remarkably well from the operation. My radiotherapy would have to be postponed for a while as there was some debate as to to whether my cancer was Squamous Cell or Adenocarcinoma. I think the jury are still out.
Post surgery
I say I recovered quite well but as always there’s a price to pay. The nerve supplying sensation to the ear must often be cut during the surgery, and this sensation never returned. I also had large patches of numbness on my shoulder and neck area, but never really found it particularly bothersome. I had an internal jugular vein removed but there are many other veins in the neck and the blood can flow back through them so it wasn’t a problem.
I had the spinal accessory nerve removed and this subsequently limits the upward movement of the shoulder. In particular, it is more difficult to move the arm from the horizontal position to directly overhead. I have noticed some shoulder droop on the side of surgery, and there is some mild pain due to inflammation at the shoulder joint.
I also had to endure the removal of one sternocleidomastoid muscle which generally causes no problems. My neck just looked a little sunken due to its removal. Nerves to the lower lip and the tongue are in the operative field, and if they are injured there can be reduced movement of the tongue. Luckily my tongue escaped unharmed! I permanently lost the movement of my lower lip on one side after surgery but this has had no lasting effect, although when I smile it looks a bit odd. My eye on the surgical side was left quite weak and now droops slightly but again doesn’t detract from quality of life.
Four years later and my neck nodes are still clear. Shame I can’t say the same about my lungs. My neck is very very stiff, and the only obvious sign of what I've been through is the bald patch at the back of my head which was caused by the radiotherapy and not the surgery. The downside of all this is a constant ache in my shoulder and chest, and the loss of general mobility. Upside? I’m alive because of the operation. It’s a no-brainer really.
How did things pan out for my new hospital friendship? Well we went through radiotherapy together in August of that year. A few days after finishing the treatment, I was in my friend's back garden having a cuppa whilst he was complaining of sciatica. A painful thing to have at the best of times. Shortly after he was taken into hospital and they found multiple tumors in his spine. He phoned me after his diagnosis and said they had given him four months to live. He died virtually to the day predicted. He was 40 and I saw him the day before he died. Cancer is one of the cruelest diseases out there. It can reduce a fit, happy person to nothing in a very short time.
Cathy
Surgery - Radical Neck Dissection
It was April 2007. After being told Hywel had cancer, we were informed tests would be run to find out exactly what type of cancer he had, in order to determine a treatment plan. He had an MRI and CT scan in quick succession and was scheduled for a Panendoscopy 2 weeks later. The Panendoscopy was a procedure in which the cavities in Hywel's head and neck area would be investigated, taking biopsies from different places like the nasal passages, tongue, throat and sinuses, to try and see whether there was cancer anywhere else in the head and neck area. This was to be the first of a number of operations. Hywel had never experienced an overnight stay in hospital before so was a bit apprehensive. I was able to stay with him until he was taken down for surgery, at which point I waited in the visiting room until his return. It was supposed to be a 45 minute procedure. After an hour and a half had passed, I was able to wait in his overnight room. Time was getting on and I was starting to get worried. The last two weeks had been a whirlwind and everything was very uncertain. Two surgeons appeared at the door and asked me if they could have a word. I panicked as they were dressed in their gowns and Hywel hadn’t come back. I thought something awful had happened and they had come to tell me.
“Is everything OK?” I asked. They told me Hywel was fine, he was on his way up from recovery. I was so relieved. The doctors told me they had undertaken a thorough exploration and it didn’t look as if there was cancer anywhere else in the head and neck. They had removed Hywel’s tonsils as they were sometimes the place a primary tumour could be found. It would take about 10 days for the results which would be discussed with us at that point. They left and I started to cry. It had been a really tense couple of weeks leading up to this day, and I needed to let it out a bit. Hywel was then wheeled into the room, feeling groggy after the anaesthetic but not too bad. I pulled myself together, it was lovely to see him and he was quite chirpy having got through his first anaesthetic. Carly who is eighteen, and Luke, twenty one; Hywel’s children from his first marriage, arrived. They wanted to see for themselves that their Dad was OK after his op. Hywel was really tired so we didn’t stay long and Luke came back to the house afterwards. I tried to make tea for me and the kids but the phone was ringing constantly with questions about how Hywel's op had gone. We finally sat down to eat at about 9:45pm and I ignored the ringing phone at that point so we could all eat together. We didn’t have an answerphone, but I was sure they would ring back. By the time I got to bed I was too tired to cry, it would have to wait for another day.
We met up with the consultant 10 days later to discuss the results. The tonsils were clear and nothing had shown up in the other biopsies so the feeling was that primary tumour might be in the salivary gland. Hywel would need quite radical surgery to remove the visible tumour and affected lymph nodes along with the salivary glands and a load of other things that I had never heard of before. The procedure was called a Radical Neck Dissection. We did a lot of research and found out about the procedure. It was to be a 7 hour operation - a pretty scary prospect. We really liked Hywel’s consultant which was reassuring, so were confident he was in a really safe pair of hands. He warned us of the possible risks which included nerve damage to the face and voice, and the usual risks associated with anaesthetic. We were just relieved that the day of the operation would soon be here and they would be cutting the cancer out.
Hywel had to go in Sunday night as he was the first and only person on Monday's list. I asked if I would be able to come in first thing in the morning to be with Hywel until he went down for his surgery. I was told I could. I slept badly the night before and was up at 6 to get to the hospital for 7:30. Adam and Elliott were under strict instructions to get up and get ready for when I got back from the hospital. I got to the hospital at 7 and Hywel was just getting himself ready. He was not very happy about having to wear paper pants - the nurses let him wear loose boxers just to keep the peace! I was able to walk alongside Hywel’s trolley as he was taken to theatre. We chatted and laughed about inane things and I held his hand the whole way. I gave him a goodbye kiss, we both said ‘I love you’ and we waved to each other as they took him into the operating theatre. After he had gone in I headed back to the car and sobbed my heart out, I was so afraid. Would he get through the op? What if things went wrong? I didn’t want to leave the hospital, but I had to get back for the kids. The nurses told me I should spend the day at home and that I could ring any time for an update.
I stopped crying and put on a bit of make-up and a smile so the kids wouldn’t see how afraid I was. I dropped Elliott and Adam off at school, then went home to face an interminably long wait. I couldn’t concentrate on anything, I was pacing back and forth and working myself into a state of panic. I rang the hospital about 11am and was told they wouldn’t have anything to tell me until Hywel was in recovery, and there wouldn’t be any point me going to the hospital as he wouldn’t be back on the ward until about 4 o’clock . Adam and Elliott were going to a friend’s house for tea after school. I had been so busy organising how I’d get Hywel to the hospital and sort the kids out that I hadn’t thought about asking anyone to be with me. At midday a close friend rang, she had finished work early and was in the area would I like her to call in? I was so grateful for those few hours she spent with me. I made us some lunch and it was a beautiful day so we sat out in the garden. I don’t think I was very good company as my mind was racing so much but it was just nice to have someone else there. She left about 2:30. I rang the hospital again after she left and they told me Hywel wouldn’t be too much longer I decided I would head over to the hospital so I could be there when Hywel came back on the ward.
I got there about half an hour before he came up from recovery. He looked fantastic when they wheeled him in, even though one side of his head and neck was full of metal staples. He was very sleepy but able to give me a slightly lopsided smile. He spoke, albeit in a very husky, whispery voice - quite sexy really! We joked he would be able to do voice-over work in the future! His left eye was slightly droopy but the doctors were very pleased with how little nerve damage there appeared to be when they did their assessment. Hywel was very tired. He drifted in and out of sleep. I went outside and made a few phone calls. I spoke to Carly and Luke and assured them Hywel was fine after his op but was really really tired so it would be best to leave visiting until the next day. I warned them what Hywel looked like so that they wouldn’t be too shocked when they did see him. I spoke to Hywel’s parents, my Dad and my Mum. I stayed until the end of visiting then left Hywel sleeping soundly.
I called in to my friends house to pick Elliott and Adam up. They invited me in for a cuppa, then opened a bottle of wine. I polished off most of that bottle myself! They then drove me and my car home as it was just around the corner. Adam and Elliott went straight to bed. I had a quick bite to eat myself and crashed out. I slept like a log - the first proper nights sleep for weeks after the longest, hardest day of my life.
Hywel recovered really quickly. He was determined to get home by Friday as it was a bank holiday weekend and he would have had to wait until Tuesday otherwise. It was my birthday on the Sunday and he wanted to be home for that. He had a surprise present that he had bought and wrapped before he went in for his surgery and he really wanted to give it to me in person. It was a bright pink iPod Nano - I was delighted with it but my best present was just to have Hywel at home so I could look after him myself.
