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Editor's note: I wanted to restart the Cancer - Your Story series whilst raising funds by doing the Race For Life but it feels so intrusive asking people to write about this difficult time in their lives. However, if you ever want a place to publish your story then please feel free to contact me.
This is Linda's story. We've been talking about her sharing her thoughts and feelings about Neil's illness for a while as we both know how cathartic, albeit difficult, it can be to write about certain experiences. As always with Cancer - Your Story, this is a series to show that you are not on your own but it can seem like it for such a long time during and after.
Linda is raising awareness for a trip to Africa in Neil's name. There are more details at the bottom of the post.
As I waited for my hospital appointment, I could feel my stress level rising.
But it had nothing to do with my check up. Instead I was scared by a poster staring down on me. It showed a man with a cancerous mole on his back, and it looked far too much like a blemish I knew Neil had.
I was there for something of nothing and it was soon sorted. But I knew the image on that poster would be burned on my memory. Hours later Neil was on the phone to our GP and if memory serves me right, he was sent for a consultation with a skin cancer specialist that week, possibly the very next day.
This was 2002 and things moved quickly. Neil had cancer. It was melanoma. Crassly, we described the mole to anyone who asked as looking like a map of Africa. It was jagged and included different hues of brown and varying textures,
A few weeks later (please don't ask me how many, my memory is shot) he was in hospital having his mole removed from his back. We were assured it really wasn't much to worry about. On a scale of thickness, which these things are measured against, the mole barely registered.
Hearing Neil had cancer was devastating but we soon started to say it was "only" skin cancer. How lucky were we? All those poor families affected by this terrible disease and there we were - mole removed, job done.
Five years of check-ups always passed without cause for concern. We got on with life. We weren't being brave, or spiritual or particularly thankful even, we just thought any reason to worry had passed. We had no clue that cancer 'works' in stages. Neil was going to be okay now and that was that. We didn't research much into melanoma, our ignorance was bliss. Doctors were always upbeat and positive, it never crossed our minds that we had anything further to dwell on.
Neil was more than okay, he was an amazing partner, dad, son, brother, uncle and friend. Sometimes we fell out - mainly over money or our different approaches to spending it :) but most of the time we loved to be together, laughing, loving our girls and each other. We hurtled down slides together at cheap and cheerful UK holiday parks, spent far too much time on rollercoasters and at my mum's caravan in Wales. We went to Cannock Chase whenever we could. We were very, very happy. We talked and talked and talked, about serious stuff, politics, love, literature, history. Neil was so knowledgeable and I respected and admired his intellect. Spending time discussing such weighty matters was so very precious to me, when my more 'natural' state was so often considered sitting on my arse in front of a soap or reality TV shocker.
After years of instability in regional journalism, Neil came to work with me at our fledgling agency. We were very proud of this, and Neil was hugely supportive. But most of all we were proud of our beautiful girls. We knew we spoiled them a little really, but they never gave us any trouble. Sometimes Neil was anxious, he would ponder decisions for such a long time, asking an endless array of seemingly impossible questions, winding me up. But most of all, he was a gentle, kind, gorgeous man whom I love with all my heart.
In June 2011 Neil said he could feel a lump under his arm. He went to the doctor and this time, things didn't seem to move so swiftly. We saw this as a cause to relax, surely if it was urgent he would be seen in within days, we figured. Perhaps it was a blocked sweat gland, maybe it was a cyst. Friends and family urged us to look on the bright side, we certainly did but I also felt Neil was doing his best to keep the severity of the situation from me. He wasn't sleeping.
I've since seen correspondence between specialists and there was no doubt this was melanoma. After various scans and weeks of Neil assuring me "it could be nothing," he was booked in to hospital at Stoke for what was called an axillary clearance operation.
The surgery would take hours and was to remove lymph nodes to prevent the spread of melanoma. Again, we were as positive as we could be - this was good that they were tackling the problem, and we were told Neil would be given results to indicate if he had anything further to worry about. So we still felt removed and distant from any real danger, this operation was pretty routine in our minds, and plenty of steps away from any major impact of a disease like cancer. Writing this now I feel like we must have been in denial. But we played it down.
Apparently, once the operation was under way, the doctors would be able to see how widespread among the lymph nodes the cancer was and to determine whether it was likely to spread further. We didn't even know what lymph glands were. I'm glad we didn't, we would have been terrified.
The way Neil explained it was that they had to look at whether the melanoma was 'trying to break out' or was dormant. I'm sure this isn't a particularly good explanation compared to what the proper medical terms would be, but this is how we both understood it.
I think we were told the operation would last four hours but in the event, it turned out much longer. It was either six or eight hours, I can't remember which. A doctor came to speak to Neil afterwards but went on his way when he saw he was asleep.
Another doctor came and saw him to say everything had gone well, so we were delighted. Apart from that brief exchange there wasn't anything else by way of an update and we were asked to come back in a few weeks for a fuller discussion. Neil requested a chat with a specialist nurse who spoke in general terms about sun care
He had a drain fitted to help rid his body of fluid from the operation at this point. It was due to be changed by district nurses. I remember I changed it a fair few times as well, but because my memory is so poor about this stuff now, I don't know why! I hated doing it, I was worried about letting Neil down, not being as diligent as a qualified nurse in this exacting process with plasters, bandage and gauze, but he kept promising me I was doing okay. We laughed a lot actually as I tended to his dressings, sitting in the sunshine of our conservatory.
We knew Neil had to rest but we also figured a change of scene would do him good. At the end of July we headed for New Quay, West Wales, joined by my parents in their caravan for the first week and Neil's mum and dad, in a lovely bungalow, the second.
But at the end of the first week, Neil started to complain that he felt a little sick and that he was in pain around the site of his operation scar and drain. He thought it was a good idea to call an out of hours doctor and spoke to NHS Direct to check of this was the right thing to do. Instead, they advised we should go to Cardigan Hospital, so we did. Unfortunately the doctor there said we should head for Aberystwyth, so we went to Accident and Emergency - we were fed up - Cardigan was 20 miles to the south of New Quay and Aberystwyth, 20 miles north.
I remember there was a lady next to us in who was in a lot of pain with cancer. I heard the nurses asking her to put a number to her pain, on a scale of one to ten. They told her how surprised they were that she was still in pain, and that as far as they were concerned, they would be out like a light if they had taken that many drugs which they said could fell an elephant. Charming I thought. Little did I know how many times Neil would be asked that very same question in the space of a few short months.
Neil stayed in hospital until Wednesday. It turned out his wound was infected. We had to cut our holiday short as he was sent back to Stoke.
Despite what we saw as an inconvenience of an infected wound, everything else seemed fine by now and as ever, we just wanted to get on with life. In August Neil returned to the golf course. He felt he had built his strength back up enough and was determined to get back out there. But he came home after barely swinging his club. He said he had put his back out straight away when he picked it up - and that he was embarrassed.
We carried on as normal, both of us working and giving minimum thought to the events of recent weeks, Neil's appointment with the doctor in Stoke had what we saw as a positive outcome - the melanoma had been contained and hadn't broken out, it was described as "borderline" - it. This was a definite cause for celebration and we shed some happy tears. Life could go back to normal.
In October, as a recovered melanoma patient, Neil was invited to take part in a study to help prevent the return of melanoma, trialling a drug . This was to be at New Cross Hospital in Wolverhampton, led by Dr Simon Grummet. After some typical fulsome quizzing from Neil about what it would involve, he signed up.
Agreeing to take part in the trial meant Neil would now have to have more scans, to make sure he was fully clear of any areas affected by cancer. The sequence of events is jumbled in my mind, but what I do remember is that initial tests showed tiny marks in both his liver and lung, but they were too small to determine their cause. Not for the first time we heard an assertion that "the more you look, the more you find," and that mostly, what was found was harmless.
An appointment was made to come back on November 30 to see if these specks had grown. If they had, this would mean they were most probably melanoma and treatment options would be explored and if nothing had changed, then it was most likely nothing. I can't be sure but I think at this point Dr Grummet advised that Neil wouldn't be able to take part in the trial as it was just about to start and his results would come too late.
Neil was full of energy, he was jogging most days, and was invited to find out more about a local six a side football side. We were invited on a review weekend in Mid Wales which would involve lots of fresh air and walking, with a touch of climbing some hills.
We celebrated our daughters' birthday on October 22 in Wales, but Neil was in a lot of pain. His back was really troubling him and when he said he couldn't manage to climb a hill with us but would wait in the car, we knew things were serious.
Back home, he went to the doctor to tell them about his back pain which he was putting down to a sporting injury. The doctor agreed, prescribing pain killers. I can see us there now as the doctor advised I should buy some gel and rub it in. Neil also took paracetamol and ibuprofen in maximum quantities. He was becoming withdrawn, his pain was becoming unbearable.
I rang for an emergency GP's appointment.
This time the doctor said she would consult pain management nurses at St Giles Hospice. Forgive me for stating the obvious but this was an alarming development. We couldn't understand why the advice had gone from 'rub in some Nurofen gel' to 'I need to speak to a hospice,' in a number of days. We went home bewildered and Neil rested.
Two days later, managing his pain as best we could, but to no visible avail, Neil was having difficulty breathing. I again rang for an emergency appointment. This time we were sent to the Emergency Assessment Unit at New Cross Hospital as it was feared he had fluid on his lung.
We waited for six hours that day and were admitted to a ward where a man in NHS-issue pyjamas was fond of yelling out at regular intervals to let everyone know his "cock was on fire."
"Oh he doesn't look good at all," a retired builder in the bed opposite announced to nobody in particular after taking a look at Neil. He was right, Neil was grey.
I remember the doctor asking why we were there and I explained, as Neil could hardly speak, that he was in so much pain and that it was feared he had fluid on his lung. When the doctor promised Neil he wouldn't be in pain by this time 24 hours later, we both cried tears of relief.
He stayed in hospital for five weeks.
For three of these he was banned from moving from his bed.
He was fitted with a cumbersome metal brace that took two people to get him in or out of. We joked he looked like RoboCop.
He lost all mobility. He couldn't even shift himself around the bed in case his spine collapsed.
Neil had cancer in his back, his lung, his liver, his lung and his rib. A doctor told me and Neil's mum and dad that the cancer could not be cured. I opened my mouth and said I wanted to get married. The doctor said Neil had said the same.
Afterwards, as I rang a friend to tell them the news, I collapsed in a hospital corridor. Just like the people do on a current TV advert. There was no-one there to catch me.
A week later I sat with Neil when he was told he had three months to live if he didn't respond to treatment – and "don't expect to respond to treatment."
Radiotherapy started straight away. We had to wait and see what would happen, whether he would survive long enough to undergo chemo as well, but it was made plain this would be what was known as 'palliative chemo' to help lessen Neil's suffering as opposed to having any major effect on how long he could stay with us.
We focused on wanting to organise a wedding, but at this stage, we weren't allowed to plan where it might be. Because of uncertainty over how long Neil would live, we were warned we may have to marry over his hospital bed.
We worried ourselves sick about what to say to our girls. Neil wanted to be there to give them a cuddle.
Things from here are a blur. I have been diagnosed with Post Traumatic Stress Disorder as my brain struggles to make sense of the flashbacks and images of our time before Neil died in May 2012. I have a rage inside like I didn’t know possible. I’ve had six pages of apology from our local hospital and have spoken to the doctor who overlooked Neil’s cancer to prescribe Nurofen gel. He has apologised and said he will remember now how quickly melanoma can spread.
We had an amazing wedding day. By this time Neil had battled his way back to walking, and there wasn’t a dry eye in the church. When he first got to his feet from his hospital bed, tears streamed down both our faces as every doctor and nurse on duty stood and applauded him.
Today I am still crying. But I am getting up every day and telling myself to be positive. Neil could not have made it clearer that he wanted us to carry on and not let losing him turn us into what he called “victims.”
That’s why we are heading to Africa in a few days’ time in his memory. We are helping children orphaned by Aids and HIV. You can read all about why and what help I would love on my blog.
Thanks so much for reading.