Please note: this is an opinion piece, not an endorsement for any particular type of activity (see editor’s note, below).

After two years of lethargy fueled by Covid and ancillary lockdowns I decided I would quest for freedom, but safely. The last two years now see surreal. Not going out? Unheard of! Not visiting family and friend – distressing. Cutting ourselves off from life. Yet together my husband and I have grown as a couple and miraculously survived. Antibody production for me due to my CLL appears virtually nonexistent, but I have had everything on offer and fought for extra booster for my husband who is my carer. He has been amazing, doing far more than me. I have just hid behind work.. now after a difficult situation there I need to take care of me.

Recently I have taken up aqua yoga which is amazing. Even going there was an informed choice to protect myself from Covid. I chose a spa with a private pool and in my class were a maximum of 4 people. First time there was just the instructor and me. Brilliant.

After four weeks I decided to book a massage. Not something that is usually agreed by all practitioners for cancer patients (this is one article showing some research done on the topic). But I had permission from my consultant. I chose a Japanese massage for lymphatic drainage. The treatment was in the pool- an experience I had never experienced before.

Gently the masseuse held the back of my head in her hand then lifted my legs until I was floating. For what seemed ages I just felt her hands supporting me. At no time did I feel it was invasive. Then gradually she moved her hands over my body and gently manipulated my neck and felt my forehead. I was aware of a peace and deep relaxation. She put her hand on various parts of me. And ended on a head and neck massage. During the 45 minute session my mind cleared and I experienced a kaleidoscope of colour that can only be described as a curtain of light like the Aurora borealis.

The sounds were like water flowing through my brain, at times slow, at others noisy and fast flowing and rippling. There were involuntary twitches in one of my legs and my left arm moved involuntarily. The weirdest feeling as I was fully conscious yet immobile. I had my eyes closed and felt a calm and joy and weightlessness.

As informed prior to the treatment she gradually took me to the side of the pool until my back was against the edge. She then squeezed my fingers as a signal the session was ending. I let my legs drop and found them at the bottom and I was standing upright. Gradually I became conscious of where I was and started to open my eyes. I cannot explain what actually happened during the 45 minutes. All I can describe is feeling suspended in space and time. Maybe like being weightless in a space ship.

The masseuse debriefed me. She is a Reiki therapist too and had combined Shiatsu with Reiki. She told me I had taken a few minutes to relax fully. She felt a sense of release of energy when my leg twitched and my arm moved involuntarily. She had hoped to release the other side in the same way but something was blocking that. She asked if I had kidney problems- yes high creatinine due to Ibrutinib. And then asked about my spleen- yes enlarged. She noticed my spine showed slight scoliosis- well actually my mum had that too but I was unaware I had… then she said my abdomen showed signs of movement and inflammation. It equates to where I had major surgery last year to correct a huge incisional hernia. Prior to treatment she knew nothing of my history except my CLL and Lymphodema.. it was like consulting a clairvoyant for my body. The blockage on my right side I attribute to a large swollen lymph gland on my iliac artery which is causing considerable discomfort and leg cramps. But she was unaware of any of my symptoms. I will be interested to see what my MRI shows in July!

So whether or not it is safe to have massage with CLL I can’t say, I just really benefited from the relaxation. The next thing I am considering is Fire and Ice- a modification of the Wim Hof method- succession of time in sauna then in her ice barrel! Very hot versus very cold! The barrier to that is whilst there are steps up to the barrel to which there is no way I could climb! Work in Progress! Something to work towards!

Editor’s note: The above account is just that, a personal story shared by a Blood Cancer Uncensored author! We urge you to speak to your cancer team before trying something new like this. What works for one person may not work for all.