Elaine’s story

My name is Elaine and I live in Israel. I was born in Manchester, England, but I emigrated to Israel in 1972 aged 17. I am a mother of three and a grandmother of eight. I retired three years ago.

I was diagnosed in July 2021, Grade 1, Stage 4. Initially I was diagnosed with Marginal Zone Lymphoma, but after having a biopsy of a node removed from my arm the diagnosis was amended to follicular lymphoma, which I thought was better as this is a more common lymphoma with a tried and tested protocol. When cancer was first mentioned, albeit indolent lymphoma, I was taken aback, but on reading about indolent lymphoma I thought if I was to get the dreaded “c” this was a more benevolent type!
I sought a second opinion and was about to start treatment when, because of Covid, it was suggested I stay on ‘watch and wait’ and in the meantime get two different pneumonia vaccinations and my fifth covid vaccine.

In December 2022 I had a biopsy on my arm, also my haemoglobin was dropping, and my spleen enlarged, and so it was decided I should start treatment with Bendamustine and Obinutuzumab. The first dose of Obinutuzumab was a bit challenging as I had a reaction and had to have extra steroids. As a diabetic this made my blood glucose skyrocket that evening, but by morning things calmed down. My main problem is and was fatigue. I reckon I am lucky because after the first treatment I reacted well, my spleen shrank immediately, and I had no dire side effects. So far, I feel there have been more triumphs than challenges. I had a PET scan today, so will have to see what is instore. I am due for maintenance.

My family have been very considerate and loving. At the beginning I kept away from my small grandchildren or wore a mask. As time went on, I was still cautious but less stressed. The older grandchildren knew grandma got tired a lot and did their best to take that in consideration! My husband signed on as my carer, as recommended by my hospital social worker, because I was fatigued a lot (and undergoing chemo) but did not have dire side effects. Subsequently, I was only entitled to a few hours care a week from social security. It is very hard to come by carers, especially in the country where I live, and as my husband is retired that was a logical step. I kept my close family and friends at home and abroad updated every month and they gave me lots of emotional support.
Letting friends know about my FL was important. Optimism and humour were certainly a big help- and during treatments I danced and joked with the medical caring clowns, equipped with my own red nose! I always took my wonder woman mascot doll to treatments.

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One piece of advice I would give to others is to maintain a positive attitude.

The support group on Facebook can be helpful. Drink a lot of water during treatment and rest whenever you can. Smile.