A Lung Cancer Diagnosis
April 28th 2010 meant a routine six monthly Head and Neck Clinic. I wasn’t worried about this clinic much. There was the usual ‘feel’ of the neck to find any abnormal lumps or bumps; a quick look inside the mouth and camera down the throat to check on my vocal chords. All was well. At the end of the appointment I happened to mention I was slightly more tired than normal, but put this down to everyday life and nothing else. I hadn’t received a scan for a while so it was suggested an MRI would be a good idea. I wasn’t worried at all. I'd been given a few scans since surgery and my neck region was clear in all of them.
I was booked in for an MRI scan on May 19th 2010. I’ve never been troubled by these machines in the past, although it makes people who are claustrophobic feel very uncomfortable. The scan was over in around 40 minutes and it was the usual wait for the inevitable results. “Nothing to worry about there Mr Jones, all is well as usual.”
May 28th 2010. I received a phone call from the hospital. “Nothing to worry about”, but they had picked up a small nodule near my collarbone and wanted to give me a CT scan. “Probably nothing”, but they wanted to be doubly sure. My heart sank immediately. I just had this awful feeling my cancer was back. I didn’t know how or where but I couldn’t help feeling the news wouldn’t be good. The nodule was so small that in a person with no history of cancer, it would have been no concern at all, but with my history they wanted to make sure. I didn’t think for a minute my cancer would appear somewhere else after being in the head and neck region previously, and especially after being clear for three years.
My CT scan appointment was at 8.45 am on June 1st 2010, so no hanging about. The scan went smoothly and all I had to do was wait to find out the results. I always find waiting the most difficult time. I don’t know why, but for me the fear of the unknown has always been far more difficult to handle than dealing with a fact.
June 2nd 2010. I was booked into a Head and Neck clinic at 11.45am. I was slightly nervous as I didn’t know what this small nodule could be or could mean. They had fortunately been able to look at the scan and the news seemed to gradually worsen. The scan revealed nodules in the mediastinum area and would have to be further investigated. I asked if they had any idea what this could mean. “I’m sorry but at this stage it could mean anything”, and was told until a biopsy was done no further news would be forthcoming. A mediastinoscopy wouId reveal much more information to the team. I was very worried and convinced myself the cancer was back. But what kind and what type? My mind was going into overdrive again, just like it did three years ago.
I was booked in to have an outpatient appointment at the University Hospital of Wales in Cardiff on June 16th 2010. All my other procedures had been done at the Royal Glamorgan but this was a specialist biopsy and had to be done by a thoracic surgeon. We had a brief chat and was told it would be a good idea to have the biopsy done sooner rather than later.
June 29th 2010. Mediastinoscopy. The purpose of this procedure is to examine the lymph nodes found in the central chest space between the lungs called the mediastinum. The mediastinum is the area behind the sternum (breastbone), which contains the heart and its major blood vessels, some of the lymph nodes, the trachea (windpipe), the oesophagus (the tube through which you swallow your food) and the thymus gland. Another general anaesthetic and we’re off. A small incision is made at the notch at the top of the breastbone. The surgeon then gets access to the lymph nodes with a mediastinoscope. This instrument is a narrow, hollow tube with a light attached. It allows the surgeon to see inside the mediastinum. Other instruments are inserted through the hollow tube to take samples of tissue from the lymph nodes or mass, these are then sent for analysis.
Another Head and Neck appointment, on July 14th, this time to discuss the results of the Mediastinoscopy. Strangely enough, the waiting for results has always been the hardest part but in this case I knew that my cancer had returned. When I went to see my Consultant the first thing he said was “You know what I’m going to say don’t you?” I said “Yes - its back”. It’s amazing how well you get to know your own body - so this time there were no shocks, just a numb feeling that I had been clear for 3 years and now the fight was about to start again.
July 21st 2010. Time to go to Cheltenham again for a PET Scan on July 21st. We had just cancelled a two week holiday to Menorca - yet another cancelled holiday - and felt sorry for Elliott as this was to be his summer break with us 'away from it all'. Having had a PET Scan before I knew the drill quite well. It was a nice sunny day and enjoyed the drive up with lunch in town afterward. Again it was another wait to see what the next step would be.
An appointment was made to attend a Rapid Access Clinic to see a specialist on August 11th. I knew I had cancer but didn’t think any more other than another round of treatment, possibly surgery. An inconvenience and another worry but at least I had been through various treatments before so felt sure I would cope with whatever they threw at me this time. My wife asked what the prognosis was. We were told that it was terminal. The word hit me like a train. I just stared out of the window not knowing whether to laugh or cry. Instead I just sat there dumbfounded. All my emotions and feelings had drained away. I had always wondered what it was like for a cancer patient to be told they had a terminal illness, well now I knew. I didn’t get upset at all. I just felt completely empty of all thoughts. We were off to Tenby for a few days in a caravan with Elliott a few days later. We felt we had to get away from everything and I wanted to spend time with my youngest son.
I had to brace myself for another round of debilitating treatment and it was still going to kill me in the end. I thought , “F**k me, what’s the point of it all?”
August 24th was the first appointment with my Lung consultant and two days later a kidney test at Velindre Cancer Centre before chemo started. I was thinking, “Ahh well, here we go again.”
A Lung Cancer Diagnosis
Hywel seemed to be doing quite well and went from monthly to quarterly to six monthly check ups at the head and neck clinic. In April 2010’s clinic he mentioned he’d been feeling a bit more tired than usual, which we put down to difficulties we’d been coping with since Hywel’s Dad died and his Mum had fallen. Hywel’s head and neck area felt the same as usual and a quick throat check appeared to be fine. The registrar decided an MRI scan would be a good idea as Hywel hadn’t had one for a while. We weren’t too worried as it was part of the routine.
The scan took place on May 19th and we didn’t hear anything until May 28th so had put it out of our minds thinking, “No news is good news.” Since my mother-in-law’s fall I had found it really difficult to cope with the extra demands on top of full time work. I asked whether I could reduce my hours slightly and work four x eight hour days equalling a thirty two hour week instead of a thirty seven hour one. A Friday off would help me cope. This was met with a lot of resistance, and I had to really push before I was grudgingly allowed to do this for a trial period. Strangely enough, every Thursday something urgent seemed to crop up and more and more work was being piled on me. I was also regularly asked to pop in on a Friday to sort a couple of things out! When Hywel rang to tell me that something had shown up on his scan I was devastated. I had spent the first five minutes of our conversation moaning about some other crisis in work before I asked him how his day was going and he told me the news. I put the phone down and howled like a wounded animal, I just knew the cancer was back and I was in complete turmoil. All the fears I had buried for the last few years resurfaced so quickly, and I was reeling. I went to see my boss and I told him the news. I told him I was going home and didn’t know when I would be back in. I never returned. I’d struggled so much to get support to help deal with my caring responsibilities that I felt I couldn’t cope. Thinking about work made me a nervous wreck and I couldn’t sleep through worrying about Hywel, and how I would cope being back at work. My Doctor signed me off on the sick with stress, and a couple of months later a voluntary redundancy scheme was offered which I applied for and was lucky enough to get.
By the time I got home from work that day I had pulled myself together and tried to be really strong and positive. There could be a simple explanation for what was on the scan, maybe Hywel had an infection and his glands were up because of that. Hywel had to have a CT scan on June 1st so that a more detailed picture could be obtained. At least there were only a few days wait between being told further investigation was needed and discussing results at the head and neck clinic. We knew from bitter experience how hard the waiting and not knowing was. The clinic was a pretty sombre affair. More abnormalities had shown up on the CT in the mediastinum and Hywel would need to see a thoracic surgeon as more investigation was needed before the team would know what was happening, and what needed to be done. We were both numb and upset as we faced telling everyone - the roller-coaster ride was about to start all over again. We knew a lot more about the world of cancer treatment this time, which in some ways made the mountain we’d have to climb seem higher. We didn’t tell as many people as first time around because we didn’t want the added stress of constant phone calls; so just informed really close family and friends.
Hywel was seen on June 16th in University Hospital Wales (UHW). It was revealed the procedure needed was quite complex and had to be carried out by a thoracic surgeon - our local hospital didn’t have one of those, so Hywel’s op would take place in Cardiff. Hywel was told he could either have the procedure June 29th or July 6th, he would then have to wait about two weeks for the results. The procedure was to take about forty five minutes and Hywel would probably be able to come home the same day. We had to decide what to do. We had been nominated by Tenovus and invited to attend a garden party at Buckingham Palace for Princess Anne’s 60th birthday on July 1st, and we were really looking forward to it. We’d never been to a royal occasion so it was to be a once in a lifetime experience. It was really exciting when the invitation with the Royal Seal arrived, and I’d bought a lovely new outfit, including a hat for the occasion. We were told Hywel might be a bit groggy after the procedure but would probably be well enough to attend. If we left it until July 6th, we’d have to wait until we got back from a two week family holiday to Menorca for the results. We decided to opt for June 29th, so we wouldn’t have long to wait for results, and hoped that Hywel would feel up to the Buckingham Palace trip.
I had to leave Hywel in UHW on the Monday night. I wasn’t allowed to go in in the morning and wait with him before he went down - visiting time only was the rule, they were a bit stricter than in the Royal Glamorgan. I didn’t stay at home waiting this time - I hit the shops! I spent a few hours giving myself some retail therapy whilst keeping my phone on extra loud so I could hear any texts from Hywel telling me when he was going down for his op. He went down about 11:30am and I headed down to the hospital in time for visiting at 2pm. Hywel was late coming back to the ward - a procedure that should have taken forty five minutes took nearly two and a half hours. Hywel looked quite pale when he came back and was in a fair bit of pain. The registrar came to see him whilst I was there. They had had problems getting to the area they wanted to reach because Hywel had extensive scarring from his previous treatment, but they got what they needed to run their tests and would be able to make a diagnosis in time for Hywel’s clinic on July 14th. Hywel was kept in overnight as he was in a fair bit of pain but when I picked him up on the Wednesday, he didn’t look very well and the nurses felt he should stay another night. Hywel wanted to come home though because of the Buckingham Palace trip, but upon our return he was done in. He went straight to bed and we had a long chat, I was so worried about him, I really didn’t want to go to the Palace I just wanted him to be at home so I could be sure he was OK. He’d been worried I would be upset if we didn’t go and admitted that he felt really poorly and should have stayed in the hospital the extra night. I got in touch with Tenovus and explained the situation and they told us not to worry about a thing, they would sort it all out. In the grand scheme of things it really wasn’t that important and I was just relieved we’d be staying home.
The appointment at the Head and Neck clinic on July 14th was another nail biting wait. We had done enough research to know that a mediastinoscopy is only done due to a pretty high expectation there is cancer present so we were pretty much resigned to the fact we’d be told the cancer was back. The numb feeling descended. It was such a blow when Hywel had been clear for three years. We were advised we should cancel our holiday as another PET scan was needed in Cheltenham and Hywel would now need to be seen by a respiratory specialist. The scan took place July 21st, and we saw the specialist on August 11th. We had discussed beforehand what questions Hywel wanted to ask and I made a list. We wanted to know where the cancer was, how it would be treated, and what the prognosis was. The specialist told us the cancer was terminal this time. What a horrible thing to hear. We didn’t take much else in after that bomb was dropped and I went into denial. I think I still am in denial as it is not something I feel able to accept. We were then referred to the oncologist who would be outlining what treatment Hywel could have.
Hywel’s surgeon who had operated on him back in 2007 was retired from the NHS and still kept in touch with us. He phoned to see how Hywel had got on. When I told him Hywel had been told the cancer was terminal, he said that the surgeon’s view of terminal was often different to an oncologists’ view, and Hywel had surprised them all before with his response to treatment so we should try not to lose hope.
The lung oncologist saw us and wanted to treat Hywel quite aggressively with chemotherapy followed by radiotherapy. Hywel was young and didn’t have any obvious lung cancer symptoms so she felt he could cope with this type of treatment, and their aim was still to eradicate the cancer. They would start with four rounds of chemo over a three month period. We managed to get away for a few days to a caravan in Tenby with our youngest son Elliott before the treatment started and prior to his first year in High School. Adam had turned eighteen in June and did really well in his A-levels. He had a place in Warwick University and would be leaving home to start his new life at the end of September. I was very apprehensive about what the future would hold for us over the next few months and was so grateful my redundancy had come through from September 15th 2010, so I could afford to stay home for a year or two to look after my family.