Patient's Story CUMBRIA WAY by Tina Everett

In May this year (2014) I walked the Cumbria Way - 72 miles in 5days with 2 friends (average age 66!) We walked 15 miles most days, and there was a certain amount of up and down though the highest peak we traversed was only 2000 ft.

The important thing about this walk for me was that I had a goal to work towards. I have known about my diagnosis since 2008 and had had prominent swollen lymph glands for 18 months, but it was only last summer that I began to feel the debilitating effects of CLL.

I was fortunate enough to be selected for an international drug trial comparing a new medication with a standard chemotherapy drug, chlorambucil. The new drug ibrutinib is not chemotherapy, but a protein that acts on the DNA. I was randomly allocated into this group and started taking ibrutinib last October - 3 tablets a day taken with water at least 2 hours after food and at least 30 mins before food or beverage - not a difficult regime if taken first thing in the morning. Ibrutinib has worked wonders for me, but I may need to take it for life and no one knows of any long term side effects. The longest anyone has taken ibrutinib so far is 4 years.

Within 2 weeks of starting the trial my lymph glands had visibly started to reduce and within less than a month my energy was returning. (I had reached the point of getting breathless climbing the stairs and could barely walk round the block). However from the start I took a short walk each day and practised gentle Pilates exercises at home, so was gradually able to build up my strength.

I have had fortnightly check-ups for 7 months and now see my consultant once a month. This visit always includes a blood test and other health markers. Everything is going in the right direction and most importantly the white blood cell count is reducing. A recent CT scan has shown the lymph glands have completely cleared and my spleen is back to normal. When the white blood cell count is back to normal I will need another bone marrow biopsy. I have had minimal side effects but it is difficult to say whether some things are normal ageing eg the frequent need for an afternoon sleep (impossible while walking the Cumbria Way!), leg cramps and exhaustion most evenings.

Back to the Cumbria way - it winds its way through many of my favourite parts of the Lake District. Starting at Ulverston (near Barrow in Furness) it goes along Coniston Water and then into the Langdale valley - from there over Stake Pass into Borrowdale and alongside Derwent water to Keswick. From Keswick we traversed around Skiddaw in glorious sunshine and climbed up the side of a gill to High Peak – then descended gently into the village of Caldbeck. Our last day (the only flat walk) was along the river Caldbeck as it flowed north up to Carlisle. We finished by knocking on the cathedral door, but were disappointed that the cathedral tea shop and all other decent tea shops were already closed by 5pm -so no cream cake to end up with!!

The birds and flowers along the way were amazing and the variety in the weather kept us from getting over heated. We were welcomed by friends the first three nights, then stayed in Keswick YHA and finally at a delightful B&B near Caldbeck. The main luxury we treated ourselves to was local taxi

luggage transfers each day onto our next accommodation.

My work as a physiotherapist taught me the importance of having achievable and enjoyable goals to work towards - it certainly helps the FEEL GOOD factor. I appreciate some people will benefit from the guidance of a health professional in setting goals and we all need support from friends or family to achieve them.

Tina Everett - CLLSA Member 2014

Coming down Stake Pass