Ipilumumab-Dose Two and Mike’s Promotion.

The next couple of weeks were the toughest to date.  Mike had started sleeping a lot, he would only be awake for an hour a day at the most and was hardly eating.  Having recently had dose one of the Ipi and the gamma knife surgery it was really hard to work out exactly what was going on.  The fits he had been experiencing seemed to subside, but he just didn’t have the energy to do anything at all.  His mood took a real dip, which was hard to experience given his normal positivity and this also made it harder to see what was actually happening.  We had trips to the GP when he was home, but he spent more and more time in the hospice.

We saw a lovely psychologist who helped us both, giving us suggestions of things we could do to help Mikes positivity return, although he was unable to manage many of the things he loved to do.  We did what we could, although i suspect that subconsciously Mike knew what was on the horizon.  We used to drive up onto a place called Kiwi Hill, which is just behind where we live (Army land).  I would walk the dogs whilst Mike sat in the car listening to music, admiring the far reaching views looking out over Salisbury plain and the dogs would be having fun all around him.  He was always keen to get out and about despite how ill he was feeling.

Adapted Dog Walking

Part of the view from Kiwi Hill

Kady Playing with Dogs, Mike in the wheelchair walking with us taking the photo!

However again his energy levels began to decline and instead of being awake for an hour at a time he could barely manage ten minutes sitting up before he was more comfortable lying down with his eyes shut, not always sleeping, as we thought!  We had to cancel another Southampton appointment as he did not feel up to the journey, which as a wife was a very hard decision to accept, but ultimately the right thing for Mike.

In the hospice he managed to perk up enough on some days to have a bath and man what a bath they have there!!  Not only was it deep and luxurious to lounge in, but it had taps that automatically stopped when the bath was run and a jacuzzi, needless to say we always had to have the bubbles on!  It didn’t have the TV, sound system and the colour changing lights that we’d had on honeymoon, but it was just the thing to make Mike feel relaxed and was the time i enjoyed most with him in those last couple of weeks.  We got to hide away from everyone in the bathroom, just the two of us and have a chat and reminisce.  It was also where we had our frank conversation about how things were looking with his condition.  As always Mike took everything in his stride and was now more determined than ever to get one more dose of Ipi.

On Friday 29th April, the Royal Wedding Day, we were due to go to Southampton for his second dose of Ipi (originally due to have been his third) .  I asked Mike on several occasions in the preceding days and on the day we were due to go, if he really still wanted to go and felt up to it.  With his true determination he was going!  So off we went on another long journey.  Boy did he do me proud that day.  Given that he had been lying down all day everyday, he pushed out four hours sat up.  With the normal delay to see the consultant, we were given the go ahead to receive dose two, on the premise that we would do no harm.  After another hour i managed to find Mike a place to lie down, so he could be more comfortable and within fifteen minutes the wonderful nurses in the chemotherapy outpatients department got him a trolley bed in the oncology day unit.  Our appointment was at 10:30 and finally at 15:00 the infusion commenced.  We got back to the hospice after a very long day at 18:00, both absolutely shattered.  How he got through that day i will never know, but it was true testament to his determination and strength.

The following day his breathing seemed more laboured and when his mum came home from visiting him she expressed her concerns to me.  I had been staying overnight in the hospice with him anyhow, just because he liked having me there and i liked being there for him, but i was also very concerned when i saw him.  He found it difficult to find a comfortable position and i asked the night nurse to help him out with pain relief, which they always did without any delay.  At 01:30 on Sunday 1st of May i looked at his colour and debated phoning his mum, i expressed this to Mike who said no don’t call, so instead i tried to contact his sister as i really was concerned and she said to call anytime.  At 03:30 i phoned his mum, he still accused me of overreacting (typical Mike), but i was taking no chances.  With his brother and sister en route from Bedford and Manchester respectively, the doctor was called into the hospice and Mike was given larger doses of pain relief and started on an infusion of medication to keep him comfortable and drifted off to sleep.  He got the job offer of his lifetime at 06:50 on that Sunday morning and whilst it was a big decision for him to make, leaving his loved ones behind, the chance of helping so many more from that paradise in the sky, was too big a privilege to turn down.

Whilst we will all miss him more than words will ever express i know he is now causing havoc up there, but watching over us all, guiding us through life until our paths meet again.

3 responses to “Ipilumumab-Dose Two and Mike’s Promotion.

  1. hanmanning

    Kady. Thank you so much for having the strength to finish Mike’s story. Doug and I have been following his progress closely since meeting you at your wedding, and often wondered how he was getting on. We were very privileged to have shared in your day and Mike made us feel so welcome and was generous with his praise. A really lovely, brave man.

    Every time I hear ‘Solsbury Hill’ I will think of Mike and smile.

    Hannah (Chilli films)

  2. Kady I was moved by your entry and Mike would be proud of you for finding the strengh to finish this for him. He truly was a fighter and an inspiration and instead of wallowing in self pity, managed to raise many funds for charity, this is what moved me the most about him, and how lucky he was to have you fighting with him. Karen xx

  3. gladders289

    Kady, one of the most moving things I have ever read. I know Mikey boy is sure to be briefing all new arrivals in his normal no nonsense way. It is phenomonal that you have been able to finish this blog in such a way as you have. he will be looking down so proud of what you have done.
    Thinking of you all.
    Gladders x

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