Meera, 34, Plasmacytoma
How did you find out you had cancer?
I had pain in the ribs with difficulty breathing in August 2010. As I was 7 months pregnant I was prescribed paracetamol and physiotherapy. The physiotherapist thought it was due to my bump being high and pushing up into my ribs. The severe pain, (which meant I had to sleep upright at night otherwise I felt I couldn’t breathe) lessened after 2 weeks so I tried to carry on as normal with paracetamol (as you do). I had continued pain in the chest, arms, shoulders and back following the birth of my son that October. I couldn’t take strong painkillers, as I was breastfeeding. I had repeated treatments at the physio with no improvements. For some reason I also kept telling myself the pain was due to a long labour and subsequent c-section. I just carried on as I had a little one to keep me busy. Eventually I saw a new physio (a good friend), who after a few sessions, prompted me to go back to the GP as he couldn’t work out why my pain was not improving and also kept coming back in different places. He wanted me to find another cause for it.
I saw the GP in April 2011. I was referred to a rheumatologist. I saw him in early May 2011 and he suspected a prolapsed disc in the spine but also took an anterior chest MRI as well as spinal as I mentioned the chest pain. Well, thank god he did. The MRI showed my sternum was enlarged and abnormal looking. I was then referred to an orthopaedic surgeon who was part of the tumours team. He arranged a sternal CT and biopsy. On Friday 27 May 2011 I was told I had a plasma cell tumour and needed further investigations. I saw a Haematologist at UCH a week later. She arranged further investigations to confirm whether it was a solitary bone plasmacytoma or multiple myeloma. These included full blood work up, 24 hour urine test, full body skeletal x-rays, spinal and chest MRI’s, a bone marrow biopsy and a PET scan. It took a further 2 weeks to confirm there was no spread and that it was a solitary plasmacytoma.
What did you think/feel when you were diagnosed?
Shocked. Angry. Frustrated. Upset. Tearful especially when holding my son. Scared. Worried for my and my family’s future.
How did the people around you react? (family/friends)
They all felt the same as I did, I think, or probably more shocked initially. I was lucky that the people closest to me were very supportive. Friends and family went into major organisation mode. My husband was my pillar of strength.
What treatment did you have?
I was initially given a high dose of steroids when it was suspected myeloma.
I had 5 weeks of radiotherapy (50 Gray over 25 fractions).
How did you feel through treatment? (toughest bit?)
Initially I didn’t notice any effects in the first 2 weeks, and then I started suffering from the side effects. They progressively got worse. They included difficulty swallowing (drinking water became impossible at one stage; smoothies were easier), shortness of breath, fatigue and radiation skin damage. I was given sucrulfate for the swallowing and I found aloe vera and calendula helped my skin.
What happened after treatment finished?
Most symptoms reached their peak 2 months after the treatment ended. Fortunately my swallowing started improving earlier, but I am still unable to eat spicy foods (burns my throat). I don’t think my fatigue has improved completely. I still need to build in rest times into my day. I still get short of breath if I over exert myself (but I’m also very unfit now which doesn’t help). The worst and most lasting effect is the residual pain in my back, shoulders and neck muscles. This combined with muscle atrophy has made many daily chores such as lifting and opening jars difficult. I still have pain directly on my sternum on pressure of excessive movement. This has had the most impact as I have needed help with looking after my son.
How did you get involved with Shine?
I met Ceinwen at a course run by Maggie’s centre when I was at my lowest point. Being able to talk to someone of the same age group and in a similar situation of having a young family really helped. Her energy and enthusiasm for Shine was infectious and I couldn’t help but get involved.
What difference has Shine made to you?
Before Shine I only knew of a couple of young people with a cancer diagnosis. Shine has introduced me to others. Some of the issues we face are unique to our age group and it really helps to be able to connect with others in a similar position. As much as I have been well supported by friends and family, sometimes you can only have certain conversations with those who have been there. I wish I had known about Shine when I was first diagnosed.
How has cancer affected your life on a daily basis?
Other than the emotional questions that still go round in my head and the anxiety that builds up before each hospital appointment, my life has changed completely. The upper body pain and weakness has meant I can’t do a lot of things or need help with them. My sternum is at risk of fracture. After a year of physio and rehab exercises I still have a long way to go before I return to full mobility and strength, if I ever do. I’ve had to change my car to an automatic. I need help with my son, particularly towards the end of the day and at bathtimes. I can no longer work as a dentist and now need to find a new career. On the upside, my husband has taken some time off work so we have a lot of family time together and are now planning a trip round the world.
How do you feel now about your experiences?
I still have days where I am overwhelmed and saddened by it all, but it’s not so upsetting now. I’m proud of how I’ve coped (most of the time). I’m touched by the compassion and care of my family and friends. I’m pleased to have met my new friends, but wish it wasn’t through cancer. I’m starting to feel excited about what the future holds.
If you could give one piece of advice to yourself before your diagnosis & treatment what would it be?
If there is anything you want to do or achieve in life, don’t put it off.