Tough Times

8 10 2014

Well, its been a while and to be honest quite a tough time!

Looking back since even before we left Gladys, we seem to have  been in crises.

Poor Alistair has become really debilitated and is almost housebound, he is in pain and relying heavily on Morphine to get him through each day. Life for him has become an assault course simply getting from the bed to the bathroom and in to the lounge to his chair. Going out is an even worse assault course as the “freehold management committee”  in the flat that we rent, in their wisdom and great sympathy, voted unanimously against us putting a temporary ramp outside to help Alistair get up the 3 antiquated front steps! I hate it when people say they are sympathetic but actually don’t have a flipping clue.

Amazingly we did manage a weeks break up in the Highlands, Alistair, Archie and I took a 2 day drive way up North to one the most beautiful places I have ever been. It touched my soul, simply breathtaking. We caught up with our dear friends ‘ The Twedds’ and even managed to get a few of Alistair’s old chums from his school days along for a mini reunion which was just lovely. We had rented a little tiny wooden cottage with views over the Loch. Good job for those views as bar 2 rides out in the car thats all Alistair got to see! I am so thankful to his lovely sister  Gillian and Uncle Paul who, crazy as they are, drove all the way up to stay with us for 2 days! Uncle Paul’s strength was like the best man hoist in the world and as ever Gillians love, nursing skills and general lariness were welcomed with open arms. They came laden with food, blankets, midgey spray and the biggest array of dressings from Boots that you could possibly imagine. The dressings over the Nephrostomy sites had been causing no end of problems, the tubes leaked a couple of times and Alistairs skin was getting inflammed and he had an allergic reaction to some of the tape! What a bloody nightmare.

Added to that, we hadn’t actually realised how much we relied on the disability aids we now have in our flat ( riser recliner chair, one of those old granny toilet seats thats about 10 feet high, a frame around the toilet with grab rails and a little perching stool at the sink). Without these things it made the daily assault course even worse. Still now, we can both weep when we remember Uncle Paul coming through late one night (well hang on, late by our standards, it must have been almost past 9pm) when he heard Alistair groaning with pain trying to get out of the chair. He literally held out his arm and in one swift movement that in that moment held love, compassion, strength and support, rescued Alistair from the sofa that had held him hostage. That moment was poignant because of Pauls love and because here was my man, a great big man who’s strength has been eaten up by the cancer inside him. We cried, lots.

So it took it out of us, the weeks holiday, but it also nurtured us, fed our souls, Archie and I walked along the Loch side every day and I found a barn just round the corner packed to the rafters with old china, nick nacks and other types of preloved goodies ( or, toot as my sister in law would say). Those who know me well know that I was like a child in a sweet shop,I went in there everyday, it really cheered me up and the lovely thing was that you just wrote in a book what you had taken and left the money through the cat flap!

On our return we had a couple of hospital appointments. One was really positive, our lovely oncologist gave us the news that there is no further metastasis, thats always good to hear. He also arranged a 5 day course of radiotherapy to try to target the pelvic lymph nodes that he suspects are causing the pain and disability. I’d said to Alistair while we  were waiting to see him to try to keep what he wanted to say succinct as he has a tendency to go off track and take an age to get to the point. When we went in and Luke asked how things were, Alistair duly said “oh well perhaps Rebekah should tell you she’s got the notes  as I tend to go on a bit”  In response Luke said ” Oh no thats fine I love a story Alistair, carry on and by the way, why are some of your eyelashes white”. Great guy, nothing more to say.

Quite a juxtaposition with our second visit that week with the consultant urologist. We had hoped he may have given us news that the pee bags could be done away with and internal stents could be put back in. We had a long wait (2 hours nearly) and a kindly nurse had clocked that Alistair was looking greyer by the minute and looked in danger of toppling off of his scooter. So we were ushered to a side room with a recovery bed in it.

Cue the smarmy git! Young gittish guy in his very dapper suit, obviously another medical guy with his own agenda and no ears! Within 20 seconds of walking in the room he said ” I’ll write a letter recommending chemotherapy drug”!!!!! Well what was he going to write a letter about when he didnt know anything about us. He walked all over our beliefs and values, discredited all the research we had read and basically in a smarmy git type way said “go home with your pee bags and make the best of things with the time you have left”!

No surprise Alistair took to his bed. His spirit went as low as I’ve seen it go and he said he felt like ‘Sad Sacks form the raggy dolls. So this is a clinic we will not be attending again. At this stage we will pick and choose very carefully whose hands we put ourselves in.

So where are we: Radiation began today, its a big ask getting him there and back every day, not in terms of me taking him but physically getting him there. But we are hopeful it will help him walk again and as a dear friend of mine said,  thats not much to ask is it.

We are back on the Budwig programme, introducing elements of the Gerson programme and doing all we can to counter the insult on Alistair’s body from the radiation treatment itself.

I thank the universe for all that we have and I ask for healing for  the man I love x

 

 

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