Here on the Isle of Man summer can be measured in hours rather than months, but last week we were lucky enough to experience a week long spell of simply stunning weather. Amanda managed to get out the back each day and enjoy the sunshine. Whilst I sneaked down the road to watch the biggest and best motorcycle road race in the world, the Isle of Man TT Races, Jane and Amanda relaxed in the scorching sun.
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Every hour or so I'd return and end up covering another piece of Amanda's sun blushed anatomy with a silk scarf to save her burning. At one point she looked like a 'scarf stall' at an Indian market.
I mentioned last week about a home made card and 'frivolous cheque' Amanda received from a friend in Banbury. I ommitted to mention she's also received a beautiful hand knitted scarf/snood/buff from Susie in Adderbury along with a beautiful card, plus a delicious delivery of Manx raw, organic chocolate from Lucy in Banbury hand made by a lady here on the Isle of Man. Of course whilst we were in the hospice my Mum kept a constant stream of fresh flowers and various organic food stuffs coming in to liven up the room. Amanda's Mum and Aunty provided a river of various types of clothing and healthy snacks too. Everyone has been so lovely and generous.
This last week Amanda's discomfort has
been up and down. We are very lucky in that we have a wonderful GP who listens to her needs and wants to help in any way he can. If Amanda wants to try and reduce medications, he'll advise how to do it safely. We aim to do this wisely and slowly through reducing one medication at a time, if there is no increase in pain, we continue to reduce. The first one was Arthrotec an non steroidal anti-inflammatory..... Unfortunately the pain increased when it was stopped for a few days, so it was re-introduced. Yesterday morning she reduced the Dexamethasone (steriod, with side effects that cause Amanda discomfort due to much bloating of the abdomen, feet and little in the face) by 25% but by the evening the pain was very bad again, so it was put back to it's normal dosage of 4mg this morning.
Once the pain and discomfort settles, she will try to reduce the 300mg of Pregablin which is taken twice daily.... It's all trial and error, much like it was in the hospice. The reason for trying to reduce the medications is to ensure that the total processing load, the overall strain on the liver is kept as low as possible. This is obviously difficult when so much pain is present due to the problems in the cervical spine. Her little hands don't want to open on their own, so when I hold them I gently tease them open, flexing her fingers to exercise them.
Here is a picture of Amanda a few weeks ago (her fingers and hands were still working here. This was two days before we went across to Clatterbridge Cancer Centre for more radiation treatment) when her friend Kesh came over to visit for a long weekend. All the girls came around for some afternoon snacks.
Amanda has an appointment to see the orthopedic specialists in Liverpool in August.... Seems a life time away, but wouldn't it be lovely if they could do something to restore the use of her hands and stop this constant pain in her neck, back and shoulders......
Getting comfortable isn't easy for Amanda, she is generally surrounded by a barrage of little soft beanies. The kind of things used to provide a little neck support whilst travelling, only softer.
Yesterday evening whilst sitting the conservatory bathed by a warm setting sun I tried a very gently massage on the muscles either side of her spine and then slowly and gently on to the muscles of the neck. Even though I was incredibly gentle it only seemed to aggravate the nerves further, eventually making matters worse. Everything is so delicate, the nerves are constantly on edge, ready to fire pain signals from the compression in the neck all the way down to the finger tips.
I want to find a way to see Amanda smile again. A smile unencumbered by pain, discomfort and fear.....
I know we'll get there, but when pain is ever present, and excrutiating pain sometimes just around the corner, each day seems to take forever. My poor little love....
Keep the love, prayers and positive vibes coming Amanda's way!
Big love to you all.
Mark x
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| 150mph with stone walls to break their fall! |
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| My shutter speed was 1/4000th of a second to get these three shots of this riders racing line... Madness! |
Every hour or so I'd return and end up covering another piece of Amanda's sun blushed anatomy with a silk scarf to save her burning. At one point she looked like a 'scarf stall' at an Indian market.
I mentioned last week about a home made card and 'frivolous cheque' Amanda received from a friend in Banbury. I ommitted to mention she's also received a beautiful hand knitted scarf/snood/buff from Susie in Adderbury along with a beautiful card, plus a delicious delivery of Manx raw, organic chocolate from Lucy in Banbury hand made by a lady here on the Isle of Man. Of course whilst we were in the hospice my Mum kept a constant stream of fresh flowers and various organic food stuffs coming in to liven up the room. Amanda's Mum and Aunty provided a river of various types of clothing and healthy snacks too. Everyone has been so lovely and generous.
This last week Amanda's discomfort has
been up and down. We are very lucky in that we have a wonderful GP who listens to her needs and wants to help in any way he can. If Amanda wants to try and reduce medications, he'll advise how to do it safely. We aim to do this wisely and slowly through reducing one medication at a time, if there is no increase in pain, we continue to reduce. The first one was Arthrotec an non steroidal anti-inflammatory..... Unfortunately the pain increased when it was stopped for a few days, so it was re-introduced. Yesterday morning she reduced the Dexamethasone (steriod, with side effects that cause Amanda discomfort due to much bloating of the abdomen, feet and little in the face) by 25% but by the evening the pain was very bad again, so it was put back to it's normal dosage of 4mg this morning.
Once the pain and discomfort settles, she will try to reduce the 300mg of Pregablin which is taken twice daily.... It's all trial and error, much like it was in the hospice. The reason for trying to reduce the medications is to ensure that the total processing load, the overall strain on the liver is kept as low as possible. This is obviously difficult when so much pain is present due to the problems in the cervical spine. Her little hands don't want to open on their own, so when I hold them I gently tease them open, flexing her fingers to exercise them.
Here is a picture of Amanda a few weeks ago (her fingers and hands were still working here. This was two days before we went across to Clatterbridge Cancer Centre for more radiation treatment) when her friend Kesh came over to visit for a long weekend. All the girls came around for some afternoon snacks.
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| My beautiful wife surrounded by her lovely friends and her sister Jane to Amanda's immediate right. |
Getting comfortable isn't easy for Amanda, she is generally surrounded by a barrage of little soft beanies. The kind of things used to provide a little neck support whilst travelling, only softer.
Yesterday evening whilst sitting the conservatory bathed by a warm setting sun I tried a very gently massage on the muscles either side of her spine and then slowly and gently on to the muscles of the neck. Even though I was incredibly gentle it only seemed to aggravate the nerves further, eventually making matters worse. Everything is so delicate, the nerves are constantly on edge, ready to fire pain signals from the compression in the neck all the way down to the finger tips.
I want to find a way to see Amanda smile again. A smile unencumbered by pain, discomfort and fear.....
I know we'll get there, but when pain is ever present, and excrutiating pain sometimes just around the corner, each day seems to take forever. My poor little love....
Keep the love, prayers and positive vibes coming Amanda's way!
Big love to you all.
Mark x
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