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14. A Carer, not alone, but lonely!

I have just reread the first of these biography articles I wrote in January 2008. Some things change but many do not. The God who comes alongside does not change, but sometimes I change in my nearness to Him.

Life is still an emotional roller coaster. Normal communication does not happen between Colin and me. Things do not get easier as the time goes by. We have lost ease of communication and exchanged it for economy of conversation. I feel lonely and Colin feels frustrated. The good times are wonderful but too rare.

October was an interesting month for us in 2014. Early in the month Colin was given the all clear and “we don’t need to see you any more” at the Oncology clinic. Good. This means fewer trips to ENT at hospital. Some patients and carers find this cut off point very traumatic. But we know the surgeons are only a phone call away - and Colin sees a speech

language therapist about every six months to have the valve between trachea and oesophagus changed, so we were not devastated by the loss of this security. We are delighted for the reason.

We had been planning a cruise we had been given for Colin’s retirement (January 2014) for best part of a year. We did a trial run packing early in October with Colin’s medicines and equipment. These took more than a complete case by themselves, so we went out and bought 2 slightly larger suitcases!

Add to this mix the fact that the pain in the trigeminal nerve was back with a vengeance in Colin’s left-side face, ear, throat and neck. The pain clinic doctor said she would be happy to try a nerve block injection again, which was administered at West Cornwall Hospital, Penzance on October 8th. It did very well. Once it was done and settled, Colin needed to gradually run down the pain killing drugs. So, currently he is in no pain, and off morphine drugs, not losing days or hours to sleep. He is still on 31 tablets and one injection a day for nerve pain, diabetes, night-time epilepsy, prostate problems, including a recently added four which control his blood pressure to try and stop falls.

Months ago Colin was referred to the Geriatric ‘Medicine man’ after a hospital overnight stay caused by a fall. We have nothing but praise for the three doctors we have seen in the course of several visits to see a ‘chanting man in feathers’. (No not really! Two of them are ladies!). Sometimes humour is necessary!! Probably a mental device on my part to evade ‘geriatric’ as I am older than Colin anyway!!

These folk have tinkered with the drugs, changed one for a similar one but with different side effects, sent him to Falls Physio, had him on daily long term blood pressure monitoring, together producing no recent falls, and apart from feeling dizzy sometimes when he coughs, not even coming close to falling either. Great.

Back to the cruise from November 2-16th. The staff, the scenery were wonderful but Colin was ill for 3 of the 14 days, in bed with a urinary tract infection. He was disappointed but made a quick recovery. I find it very stressful to care for him in a strange situation. The responsibility without the usual support lines is harder to cope with, even though everyone was helpful and encouraging. In those situations I find it hard to see the wood for the trees, to see the beauty and wonderful provision for my sick husband.

My driven husband, officially retired, still meticulously plans his diary for writing and everything else he does. He is still trying to work out what retirement means.

Perhaps it is a little early to know about retirement. The laryngectomy procedure back in 2006 resulted in Colin thinking through who he was and what his life was all about when his career (Christian public speaking, teaching and ministering) was taken away and his conversation and discussion – which he loves – was made more difficult.

His life had been threatened by cancer, but as a result of the laryngectomy operation the essence of life as he knew it was gone. God was and is still a loving God - He had not changed. Colin had to build life, block by block - who he was, what he did.

I struggle to keep on an even keel when Colin says things gruffly with a sore throat and stoma, when I misunderstand signals because of lack of words - even writing this has made me tearful. This is still the man I love - for better or for worse, but not quite the man I married.

I need God’s help every day to be the Carer I want to be.


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