12 November 2010

A difficult post to write...It's loving, not all sad & scary.

This will probably be the hardest post I ever have to write. I want to write it, no, need to write it, then I can read the words to make it seem more real, as at the moment it still feels a little surreal.

My husband, my partner of 12 years, Ian, died on Friday 22nd October 2010. He didn't 'pass away' 'leave' or any of those words I personally find so infuriatingly vague, he died. Exactly one month, date to date, after our Wedding Day.

I knew it was coming. I was as prepared as you can be, I truly was. I know myself too, too well. I cope and function better if I know all the facts, every possibility, every tiny thing.  I'd asked every question I could think of, even the one you never in a million years really want to ask 'How will he die?'...But I asked and I was told.


Ian's particular cancer type was extremely aggressive. A Malignant Melanoma, which never presented on the skin, but was discovered as a large tumour wrapped round his Illiac vessel (the main artery in the hip/abdomen area, to, in his case his right leg). At first we were told he could have surgery to remove it, but in the 3-4 weeks it took to see the  top surgeon at The Marsden, it had doubled in size and was then inoperable. 

He underwent palliative radiotherapy in March, with little hope of reducing the size, just stopping the growth. But as Melanomas are predictably unpredictable, it shrank. To a size that was then operable. A glimmer of hope, and Ian was always so positive.

The same surgeon performed the surgery, in late June. But reading his notes, I'm extremely nosy and as I said before, have a need for information, good and bad, the surgery was listed in bold, clear as day writing, 'Palliative Surgery'. At this point I 'knew' how this would end. My heart hoped it wouldn't, but my head knew it would. This was for me, the moment I went from hoping, positively for Ian, to learning to accept. 

Unfortunately in September, as a side effect, Ian developed a blood clot which meant a stay in hospital of 2 weeks, having daily injections. It was during this time I had a meeting with his Oncologist. 
We had a long, very emotional conversation about 'How long?' and 'How?'. She was as honest as she could possibly be with me, and explained 'Weeks rather than months' and told me to try and concentrate on 'All the positives, the moments you can look back on and make you smile, even if you don't believe me now, you will need them and cherish them, so make them'. She was so right...our Wedding Day being one of those.


I got to acceptance much sooner than Ian. He struggled with it. I know he felt 'acceptance' was giving up, giving in. He needed to feel he was fighting it. He never said it that way, but I understood him so well. So we never talked about when, he was more comfortable not knowing. 
In the same position I would probably be the same, who knows?
On a different note, I have a slight problem with some expressions, such as, 'They fought to the end'. It somehow makes it sound as if when the person accepts what will happen they have 'failed' in some way?

He did wonder how?, on only one occasion with me.  He was terrified of dying, in his words, in excruiciating pain. He said it was his biggest fear.

"You will probably get tireder and weaker. You'll sleep more often, for longer, with less waking moments. Until you sleep all the time. Then the sleep will get deeper, until finally you'll stop breathing while asleep."

This was his Dr's answer to to me when I'd asked 'How?'. And it was what I told him.

I saw and felt his relief.

Then I made a promise. 'I promise, and you know me, I don't break my promises. I will do everything I can to make sure it is as pain free as possible'. 

On Sunday he was unable to swallow his array of many drugs. Not for the reason I'd previously thought, because he couldn't physically swallow, but because he didn't know how to, or what to do. It is impossible to get someone to swallow pills if they don't understand what you mean. I tried and I had to give up after 25mins. That's when they started a Syringe Driver. So he was still getting all his pain relief & sedation, but as a constant flow over a 24 hour period.

By Tuesday he was in his hospital bed, in the dining room half of our living/dining room.
The Tuesday morning was also when he stopped drinking fluids. I had hoped this would help with the pain he was getting on weeing by this point, as the tumour was growing and obviously affecting his bladder in some way. And as much as the continuous drugs he was on helped hugely with keeping him comfortable, his pain increased during those times. So Wednesday and Thursday was spent mainly, apart from spending time with him, with all of us, District Nurses, Hospice @ home nurses, making sure he got top up shots of diamorphine to reduce that pain. Thursday evening was also when his breathing changed, quite distinctly. Shorter and shallower. Although I had a wobbly moment, just before this, on realising that I wasn't keeping my promise to him. We weren't making him completely pain free, I felt I was failing him. But yes, by Thursday night he had no pain, eventually.

I say eventually, as there was one District Nurse, on Thursday evening, who had a problem with giving a 5ml shot of Diamorphine, for pain, (which he had been having up to that point) as in her own words 'Given the stage Ian is now at, I'm unhappy with giving morphine, as this could hasten this stage'...

My response? Because obviously this was more about accountability and her signature being on the drug chart, if he were to die shortly after.

"You're unhappy about giving pain relief drugs because you're concerned about hastening the end, but you're happy for him to stay in pain, but for longer???...That is what you're saying? Well, I'm unhappy with your decision". How fucking illogical is that?

Luckily we had the most amazing Hospice@home night sitter, Marion, an Auxillary Nurse. Marion had a long discussion with the District Nurse about maybe upping his sedative, who then conceded to give Ian 2.5ml of morphine and 10ml of sedative. So no surprise when 2 hrs later we had to phone them out again for more pain relief, whereby the Nurse that arrived that time had absolutely NO issue with giving a full dose of each. 

During the Friday morning I had a very quiet talk with Ian, telling him that everything was sorted out, there was nothing more to worry about, everything and everyone would be okay. I was telling him to go. I know he hated being like this, unable to function on even the most basic level.

His Parents and 2 brothers arrived at the house at 1.45pm, and bumped into Ian's son who was running 2 mins round the corner to his house to change out of his school uniform (poor thing had been wearing it for 2 days!). His parents and brothers sat and talked with Ian, although there was no response from Ian. But I had read everything I could get my hands on, and discussed it with both Macmillian and Hospice nurses, and they all agreed that hearing is the last sense to go, so to continue talking.

I now have personal, absolute proof of this fact. Ian died at 1.57pm, just 12 mins after his Mum, Dad and 2 brothers arrived and spoke with him, although his breathing had been laboured for hours.

I held his wrist and hand with both my hands, without thinking. And I felt his pulse stop, quite by accident. I didn't 'plan' it that way, it just happened. It was a truly incredible moment. His bed was surrounded. Me, his parents, his brothers, my Mum and Dad, 2 of my children, and one of his best friends.

He took two breaths, one tiny cough and just didn't breathe back in...

There was a split second, just after that last breath, of complete and utter silence and peace, almost like a vacumm.

...and I said?

"Well darling, you made that so easy"


There's a lot of talk about Quality of life, but Quality of death? It's still a very scary and taboo subject to discuss. What does Quality of Death actually mean? For me it meant love, support, comfort, no pain and no fear, for Ian or us as a family. If you have good, loving people on your side, supporting you, all pushing for the same thing, and you love and know the person, it's the very last thing you can do for them.

Getting it right. 

It's the one thing that is guaranteed in life, we will all die at some point. And the people around you, given the right circumstances, can make it good.

And as near as possible, we all got it right. I couldn't change the ultimate outcome, but I damn well made sure the journey there was the best it could be.

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