Diagnosis & Prognosis

About twelve years ago I had the bright idea (thought so at the time!), my family had to go cycling. Oh yes! We were to ‘get out there’, go hiking, eat healthy food and do some serious exercise. Ho hum. Quite something to consider and initiate, another issue entirely to motivate and maintain.

The diagnosis. It was at a visit to the local surgery with my husband George, when we got the news. What followed was the beginning of a ten year journey, we certainly were not expecting.’You need to lose weight … ‘ We already knew that! Losing weight is not an instant event and being overweight not a happy place. It was not so much what was said but what remained unsaid that day. Profoundly aware that this ‘Doc’ probably had never had to lose weight, it was at this point my thought pattern changed, recognising in some small measure the difficulty 64% of adults in the UK face (www.bbc.co.uk 3Jan2014). We already knew about the diagnosis of ‘osteoarthritis’ and the severe pain that brought to George. Life changing adjustments had to be made and this affected the whole family. Our son went from playing rugby with his dad as a ten year old to being acutely aware of the deterioration of his dad’s mobility and the significance to him. Our daughter too was affected by this lifestyle adjustment.

The symptoms. A year later and another diagnosis ‘diabetes’, firstly tablet controlled and then insulin. Always the joker and forever looking on the bright side, George embraced this new challenge with faith and courage, believing at every stage that recovery was an option, not an impossibility. There were the usual symptoms of a ‘type 2 diabetic’: the excessive thirst, dizziness, slow healing after cuts and grazes, fatigue which necessitated the regular injecting with insulin. He used to joke about the diabetic drug byetta, saying that it was lizard spit! Indeed “The diabetes drugs, Byetta and Victoza are sometimes called “lizard spit” because they are derived from the saliva of a desert lizard… ” believed to originate from Namibia (from an article by Stephen Fields 15May, 2014).

The impact on lifestyle. The impact of increased medication, including large doses of morphine for pain, was immense. It impacted our lifestyle, our friendships and meant that we had to reconsider how we entertained, visited (or not!) or went on holidays and day trips. Thankfully we still had a family life and managed to visit Wales for camping trips as well as Edinburgh and Inverness, taking in Ben Nevis, by cable car and an hilarious boat trip on Loch Beinn a’ Mheadhoin, Glen Affrik – all happy memories and great times to remember. We took our daughter and son to Wales, determined to get teenagers away from the distractions of television and computer. They were thrust into the water on a dinghy to experience the white water rafting and rapids. Quad biking on another trip. Then it was off to camp, fitting in a horse ride and finally climbing up Snowdon (George by train). It was a great family time with much fun and laughter in between the struggles and challenges.

The prognosis. Three years before he died, George had a mild stroke, was diagnosed with ‘Ischaemic heart disease’ and ‘asthma’. So there were tablets and more tablets. Very soon after this we were given the next diagnosis of ‘chronic lymphoid leukaemia’. What is the end result? How long does this last for? How many years before this nightmare will come to an end? What is the prognosis? – some of the questions faced. The final diagnosis was ‘cirrhosis of the liver’ which contributed to an ‘ischaemic bowl condition’ and finally leading to his sudden death on Boxing Day 2013, at home with his family. After dizziness and loss of consciousness early that morning, the 999 call, the paramedics arrival and departure it was clear his organs had failed and there was no longer anything anyone could do.

Looking back in my diary to October 2011, on a trip to Monmouth in Wales, I wrote this reaction George gave to my philosophical “So Georgie, what can be gleaned from this rollercoaster journey we’re on?” ” I’ve stopped asking why am I suffering,” he replied. ” Why the diabetes, stroke, heart attack, asthma and leukaemia. I’ve stopped feeling sorry for myself. Step by step in His time (God’s time), I know healing is on its way.” You see he believed in God’s provision of divine healing. Two years before his death he did make a remarkable recovery. It was so encouraging, an answer to prayer! Our daughter remarked, after reflection, this was like ‘extra time’ in a game of rugby … It was as if God was allowing us to spend more time with him. God’s provision.

An inward change. The most dramatic change to someone suffering (I reflect), someone who embraces God and trusts Him, is the inward change regardless of their circumstances. I witnessed the change in George from being angry, disillusioned, bitter, frustrated and fed-up to one who accepted and trusted, believing things would change for the better. He also said, on our trip to Wales: “I’ve learned patience. It’s not always the harsh lessons. You learn from the gentle and good things that happen.”

Wanting to help others facing a similar challenge, here are my Ten Top Tips for anyone facing long term health problems:

1. Enjoy family time when you can – even if the change is dramatic, from playing rugby to board games – like monopoly!

2. Make a list of eating patterns, changes and symptoms – helpful to present to the GP at regular appointments.

3. Have a medicine review – a simple check of the prescribed medication and the side effects was a ‘wake up call’ for us. All tablets necessary?

4. Be kind to yourselves – if you can’t make the dinner date or day out, leave it for when you can! Enjoy a special candlelit dinner instead in your own home when faced with mobility issues, when eating out is a challenge. Pre-warn friends you may need to cancel at the last minute.

5. Keep your sense of humour! Don’t lose it … “Very careless of you,” he’d say if you did ; -)

6. Create a file with medical correspondence – from health professionals, reviews and visits to the hospitals. Write to them, if necessary.

7. Obtain a simple tablet organiser – This is particularly helpful, as in our case, taking 20 tablets a day at various times of the day and night.

8. Enlarge your support group – Vital to let others help! Joining a good Church group believing in the power of prayer and letting friends and family share the load.

9. Put a simple note on the door – when overwhelmed, to alert others it’s not a good day to visit.

10. Spend time together and count your blessings – there is always someone else whose struggle is far worse!

When one does not receive the diagnosis or prognosis expected or hoped for, in the middle of a nightmare of suffering, it is refreshing to have a friend, medical professional or keen listener acknowledge the severity of your pain and highlight your plight – listening, spending time with you and sharing your burden. This was our experience at the end of George’s personal journey through suffering.

To conclude, a quote from Robert Louis Stevenson (1850 – 1894) ” He has achieved success who has lived well, laughed often and loved much; who has gained the respect of intelligent men and the love of little children; who has filled his niche and accomplished his task, who has left the world better than he found it; who has always looked for the best in others and given the best he had; whose life is an inspiration; whose memory a benediction.”

Remain hopeful. Be encouraged. Count your blessings. If you too, Dear Reader ever go through such suffering or know someone who does. Suz.

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