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<p begin="00:07" end="00:12">My name is Ciarán Devane and I'm chief executive of Macmillan Cancer Support.</p>
<p begin="00:12" end="00:17">Katy and I met at a work conference. I was working as a consultant</p>
<p begin="00:17" end="00:20">and she worked for a pharmaceutical company. </p>
<p begin="00:20" end="00:25">I was talking, she came up to me afterwards and we ended up going out for a drink</p>
<p begin="00:25" end="00:29">at a pub called the Leather Bottle in Hampshire.</p>
<p begin="00:29" end="00:35">So she was quite bubbly and confident and interested</p>
<p begin="00:35" end="00:44">and, stereotyping hugely, as many red-heads, wasn't going to suffer fools</p>
<p begin="00:44" end="00:50">and would pick you up on anything that she thought wasn't sensible and wasn't right.</p>
<p begin="00:50" end="00:52">So she knew her own mind.</p>
<p begin="00:52" end="00:56">We got married in September, we were both in our thirties</p>
<p begin="00:56" end="01:00">and Katy was diagnosed in the January just after that</p>
<p begin="01:00" end="01:04">so three and a bit months after we got married</p>
<p begin="01:04" end="01:07">and the operation was a few weeks after that again.</p>
<p begin="01:07" end="01:12">So after the diagnosis, once we were through that disorientation </p>
<p begin="01:12" end="01:14">it's fair to say we were angry because</p>
<p begin="01:14" end="01:18">we were young, we had careers and jobs, we were affluent.</p>
<p begin="01:18" end="01:22">The world was our oyster, planning on having kids</p>
<p begin="01:22" end="01:27">and because of the pelvic radiotherapy of course that meant that Katy couldn't have kids</p>
<p begin="01:27" end="01:32">and all that disappointment was there and it took a while to come to terms with that.</p>
<p begin="01:32" end="01:39">It was probably eighteen months or so before we would both say actually we were at ease with the situation.</p>
<p begin="01:39" end="01:47">Katy was ill for five years in all before she died and for the last three we knew it was terminal</p>
<p begin="01:47" end="01:50">Katy was going to die of her cancer.</p>
<p begin="01:50" end="02:00">It was important I think that we decided to live life and have the cancer fit in with it</p>
<p begin="02:00" end="02:05">rather than living life around the cancer and I think that was a big decision for us.</p>
<p begin="02:05" end="02:11">We would, for example, go off and stay in a nice hotel which normally we would never dream of spending the money on.</p>
<p begin="02:11" end="02:18">Or do a trip to France. And we went back to the west of Ireland a lot,</p>
<p begin="02:18" end="02:23">which was a place we both really liked, that we'd been to frequently. </p>
<p begin="02:23" end="02:29">And make the most of the time, and just enjoy the day, whatever the day brought.</p>
<p begin="02:29" end="02:36">Watching the birds at the bird feeder in the garden while the rest of the world was slaving away at work.</p>
<p begin="02:36" end="02:39">It's hard to say what turned around our feelings.</p>
<p begin="02:39" end="02:46">I think it was time. I think it was accepting this was only going to go one way</p>
<p begin="02:46" end="02:48">and not trying to fight it,</p>
<p begin="02:48" end="02:52">and really making a decision to say actually we are going to do the best we can with this. </p>
<p begin="02:52" end="03:00">Katy had difficulty walking. For example, went from being able to walk up the stairs,</p>
<p begin="03:00" end="03:03">to walking up the stairs holding the banister, </p>
<p begin="03:03" end="03:07">to holding the banister but also another one that the nurse had put in,</p>
<p begin="03:07" end="03:14">to having to go up backwards, to having to be carried up.</p>
<p begin="03:14" end="03:19">I remember when the district nurse at one point suggested putting this extra banister on the stairs </p>
<p begin="03:19" end="03:22">and saying 'What's that needed for?' </p>
<p begin="03:22" end="03:26">But by the time it was installed it was a godsend</p>
<p begin="03:26" end="03:33">and it was about helping Katy get up the stairs independently, using the two banisters.</p>
<p begin="03:33" end="03:40">And then there was a hospital bed, which had an air mattress to prevent bed sores</p>
<p begin="03:40" end="03:47">so everything you would imagine in and around a hospital bed was moved into the bedroom initially </p>
<p begin="03:47" end="03:50">and then to the living room.</p>
<p begin="03:50" end="03:58">My role, I guess, as a carer was sometimes helping Katy walking, dressing, getting into the wheelchair.</p>
<p begin="03:58" end="04:06">Obviously you end up doing all the driving and all the household chores as well. </p>
<p begin="04:06" end="04:09">So you know, you have a full-time job.</p>
<p begin="04:09" end="04:18">And then it gets into the nursing side, it's the bandages, sorting out the catheter, and so on.</p>
<p begin="04:18" end="04:24">So you end up in many, many roles as a carer, all of which you have to try to do as best you can.</p>
<p begin="04:24" end="04:29">It's a huge learning curve. I'm an engineer fundamentally. </p>
<p begin="04:29" end="04:33">What do I know about nursing and care and medicine? </p>
<p begin="04:33" end="04:38">You do end up having to learn a lot. You're having this thrown upon you.</p>
<p begin="04:38" end="04:41">You didn't ask for it. And you try and learn,</p>
<p begin="04:41" end="04:45">whether it's getting the advice from people you know, or from the district nurse,</p>
<p begin="04:45" end="04:48">or hoping you're doing your best. </p>
<p begin="04:48" end="04:53">As Katy got more ill, the district nurse was coming twice, three times a day, </p>
<p begin="04:53" end="05:01">the GP was around regularly. The hospice doctor and the hospice nurse came fairly frequently, </p>
<p begin="05:01" end="05:06">and we got quite a bit of support from Macmillan.</p>
<p begin="05:06" end="05:10">There is a Macmillan centre at the hospital in Guildford, the Beacon. </p>
<p begin="05:10" end="05:13">And we were fortunate in that way.</p>
<p begin="05:13" end="05:20">The district nurse was, in particular, and everybody around her, was very good at taking one small worry away,</p>
<p begin="05:20" end="05:24">even before you knew you were just about to have that worry. </p>
<p begin="05:24" end="05:27">I think that was hugely valuable. </p>
<p begin="05:27" end="05:32">Macmillan was very helpful with Katy's mother, to Katy's mother, </p>
<p begin="05:32" end="05:39">who unsurprisingly was very distressed by the fact that her daughter was dying.</p>
<p begin="05:39" end="05:44">I also knew when it was in the last few days, </p>
<p begin="05:44" end="05:50">and in some ways that is the most difficult, of course, and you would expect it to be.</p>
<p begin="05:50" end="05:53">Katy was hanging on. </p>
<p begin="05:53" end="05:58">And it got to the stage where one of the nurses said 'Ciarán, you have to give her permission to go', </p>
<p begin="05:58" end="06:04">which was the hardest thing I've ever done in my life.</p>
<p begin="06:04" end="06:08">I was with Katy when she died, which was early in the morning, </p>
<p begin="06:08" end="06:19">and the support continued frankly, the medical director of the hospice was around.</p>
<p begin="06:19" end="06:23">Things, obviously, were very different after Katy died.</p>
<p begin="06:23" end="06:32">While Katy was ill, as a carer you're the person who tries to be steady, holding things together, </p>
<p begin="06:32" end="06:38">while around you all these crises of everything are happening.</p>
<p begin="06:38" end="06:45">For me, at least, it was afterwards that I collapsed in a heap in the corner,</p>
<p begin="06:45" end="06:51">having been holding it all together, doing the project management,</p>
<p begin="06:51" end="06:56">trying to be the steady person with all this stuff going on around.</p>
<p begin="06:56" end="07:01">That was the time I needed to hold myself together and the support from family and friends. </p>
<p begin="07:01" end="07:07">It is different for everyone. In my case it was taking a lot of time, </p>
<p begin="07:07" end="07:11">other people describe it as a bit like post-traumatic stress.</p>
<p begin="07:11" end="07:19">But what's in common with all of that is after a bereavement the carer needs support as well.  </p>
<p begin="07:19" end="07:28">I think having a personal experience of cancer has been very helpful to me in my role in Macmillan  </p>
<p begin="07:28" end="07:32">because I hope it means I will never forget what we're about.  </p>
<p begin="07:32" end="07:37">What I mustn't do is imagine that the one experience we had is the experience of everyone. </p>
<p begin="07:37" end="07:39">And I hope I don't make that mistake.  </p>
<p begin="07:39" end="07:50">I think something as important as Katy, marriage, et cetera, and of course Katy's death, doesn't go away. </p>
<p begin="07:50" end="07:56">It's not far beneath the surface, it's never far beneath the surface, of course. </p>
<p begin="07:56" end="08:01">And nor should it be because otherwise it wouldn't have been as valuable and real as it was.  </p>
<p begin="08:01" end="08:11">But life does move on, has moved on. And people do bounce back.  </p>
<p begin="08:15" end="08:18">For information, help, or if you just want a chat, </p>
<p begin="08:18" end="08:25">call the Macmillan Support Line on 0808 808 00 00 or visit macmillan.org.uk </p>
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