Our melanoma story (to be continued)

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 last year 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 called Herceptin (I think.) 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.

A week later I sat with Neil when he was told he had three months to live if he didn't respond to treatment.

But we were told "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.



*I've been advised to write this down and have plenty more to say. I don't know when I will get around to telling the rest of our story but three months on since Neil died, I felt ready to put this down. I love Neil today more than I ever have and the mass of emotions I am feeling day to day is confusing, tough and painful. But I promised Neil we would all be okay and I am doing my damnedest to make it so.








27 comments:

  1. Linda, I felt so emotional reading this, I can only imagine how you must have felt writing it. I'm really glad you did, though: I know how private you are, and how hard this must be for you, but I really hope it helps to have a place you can just let it all out. I will definitely be reading. x

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  2. From a medical perspective, Neil's cancer story is very interesting to read. I can now understand the whole shock of the terrible news, after thinking things were going ok for so long.
    From an emotional perspective, I just can't imagine how hard it is to lose a husband. I lost my dad in 2011 and that was sad but I have coped, he was an old man. However my mum, who thought she would feel relief when my dad died, is overwhelmed by the huge loss his death has caused. So I have an inkling as to how hard it must be for you, Linda.
    With much love
    Trish xxx

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  3. Hi Trish, Helen, Amber and Ellen, thanks for commenting so thoughtfully, the rest of what happened is so very traumatic that I'm getting flashbacks and I'm reliably informed I'm traumatised, I don't know when I will be able to write it down or if I ever will be really, but there are other things I do want to share xxx

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  4. Sending love, strength... and hugs. xx

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  5. Writing it down is, I expect, a release, and a way you can let go of some of the pent up emotion that is no doubt festering within.

    K xx

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  6. Shit. Sitting here with tears rolling down my face. It's great you're writing it down, Linda. Really is... There are no words that can help except that..by God, girl - you had/have a love that made the sky light up, that made the planets sit up and take notice...not everyone has such a beautiful thing...it's awesome. And, I dunno, I kinda doubt Neil will ever really leave you, not really...and, call me an old softie, but I do think kindred souls meet again, and again and again. xxxxxxxxxxxxxxxxxxxx

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  7. Oh Linda, there are no words. I'm so sorry you lost Neil, he sounds like an interesting, funny and loving man. I hope writing this down has helped some tiny way towards putting the broken pieces of yourself back together. xxxxx

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  8. Such a sad story, beautifully written (of course). Cancer is such a cruel disease - you think you've beaten it, and then it comes back months or years later. Maybe it's at least some small consolation that Neil is no longer in pain. I hope that in time your own will heal a bit too.

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  9. Hi CJ, Debbie, Molly, Jane and Nick - thank you so much for your responses here, I was pretty reticent about writing this and have a real problem with saying any more as it got so horrible, but of course it's very nice to see such kind and supportive comments. I am still talking to Neil and if I think about seeing him again I get very,very upset! We have had some wonderful holidays in the past few weeks and I have been chilled and pampered, as well as healthy, but I have been really feeling it today and swept away a little in a tide of sadness, I know we will be okay xxx thanks again.

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  10. Hi Linda

    It must be so hard to write it down, to share such intimate details and your pain. It's so sad to read about how much pain he was in during that time - it must have been so very hard to go through that with him.

    I know you'll keep your promise to him to find light in these dark times to see you through. I am so pleased you managed to be able to enjoy parts of your holiday.

    You'll always love him and you'll always miss him. There will be sad days and you'll have to let those days wash over you and look for tomorrow.

    You are a writer - a great one at that. It might help to write out the flashbacks as they happen.

    Lots of love to you and your girls
    Emily xxxx

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  11. Hi Emily thank you so much for such an insightful comment which I have already read about 5 times. Writing this so far has helped me, there's no question of that but it makes me feel guilty and sad for what I'm writing about. The thought of divulging details about other things that happened, that are so upsetting to think about, is one I can't manage at the moment. Cancer is a vile and disgusting disease. Stating the obvious again there. Much love xx

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  12. Reading this, there were so many things I recognised. I lost my Mum to cancer in November 2010, eight days before I gave birth to my twins. It is such a cruel disease. I recently wrote about it on my blog and I really found it helped to write it down - I hope it helps you too. I actually wrote it then sat on it for quite a while, until I was ready to press 'publish'.

    I hope it helps to tell you that the passing of time helps you feel less raw, and you gradually get fewer days where you feel that crushing sadness. It does get easier. x

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    1. Hello. Thank you very much for commenting, I'm so sorry you lost your mum and so close to having your twins, even now I think about how my girls' children won't see their grandad. I was very reticent about sharing our experience and feel anxious about recounting other things, but I can see it has helped me. Xxx

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  13. Such a cruel disease. So sorry you've had to go through this Linda. I read this yesterday morning and didn't know what to say. I still don't really. I definitely think writing things down can be hugely helpful, so it's good to see you are able to do this now. I've been thinking of you all for months. Hope life is starting to get a little easier. xx

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    1. Hi Rosie, thanks for being so lovely. I don't think it's always easy for people to know what to say, but seeing they care through just knowing they have read and felt moved to say so, is comforting you know, well it is for me anyway, thnak you.

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  14. Just joining in my comment here to those above - this was incredibly moving and I know is only a portion of what you have gone through, and you are incredibly brave and strong to share it. Your husband sounds like the kind of man who would have wanted you to do so perhaps, especially as you met through journalism, perhaps it is fitting. I hope that you can vent when you need to, and don't need to think about who reads it. I hope that you keep finding beautiful memories alongside those that hurt, and that eventually the lovely ones are the ones that last, as they always do.

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    1. Hi, thank you for such a generous and wise comment, as you can imagine I'm not really thinking that I'm particularly brave or strong but I am trying to make sense of something where there is no sense to be found, I'm touched by your comment, thank you.

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  15. Hi Linda

    I've just seen your thread on the facebook group and felt compelled to look at your blog. Writing things down really does help with getting your feelings out. Your grief must be so overwhelming and the thought of it actually takes my breath away and fills my eyes with tears. That fact you made that promise to Neil gives you the strength to carry on for your girls and cherish your precious memories that you have with your husband.

    Hannah xx

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    1. Thank you so much, it really does touch me when people are moved enough to comment. I wasn't sure how much writing this down would help at all and for a good while I was totally anti, I'm glad I changed my mind. Thank you xx

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  16. Hi Linda,

    I'm so sorry for your loss. I too came over from the FB group and I couldn't read this and then not comment. There is nothing I can say, in the face of what you've been through and what you're going through. But just keep writing. It mightn't seem it at the time, but it does help...

    Lisa xxx

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    1. Thank you Lisa, I really appreciate it, I have welcomed the encouragement to keep writing, and I am trying my very best to be kind to myself.

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  17. I'm here from Parent Bloggers. I read your story and sobbed. My sister had Melanoma, which after her five-years-all-clear celebrations, developed aggressively into lymphoma. In spite of the surgery to remove her lymph nodes she died aged 36. This week is the anniversary of her death and it still hurts like hell. But we get through it. We have to.
    I am so sorry for your loss and am absolutely humbled by your strength in sharing your story. I hope you find great comfort in writing and remembering the love you shared with Neil. xxx

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    1. Hello, thank you for commenting so thoughtfully here for me, I can tell you with hand on heart that it is helping me , I think the comments as much, if not possibly more, than writing this down. I am so very sorry to read of your loss. Writing more down about how things went is however, too painful, all four of us experienced and witnessed things that nobody should, I am so sorry to say that this is a scenario that is all too familiar to you, much love.

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  18. Linda, I still don't know what I should be writing. I just cannot not say anything anymore. I followed your twitter thread with mounting dread but so much hope for you all and was so so sad towards the end of Neil's battle. The love you had for each other really shines through with each tweet and this post - please, don't feel pressured to write about the rest of Neil's story - I would hate that you felt you 'ought' to carry on - in your own time. I have never met you or even spoke to you, but please be assured that there is a whole community here, that is thinking and praying for you and Neil. With much love x

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  19. Thank you Helen for such a kind and supportive comment. I don't think I will write down the rest of it here, it had been suggested it would be cathartic and help me 'heal' but I feel the post I wrote about how my grief feels has helped me very much, along with the comments. It's too painful for me to touch on really, thanks again, I really appreciate it.

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