Today is World Blood Cancer Day so an appropriate day for a blog from me.
The four big cancers; breast, lung, bowel and prostate are all well advertised and most people could tell you a main symptom from these cancers. For example the following are all mentioned in tv ads; lumps, a persistent cough for more than three weeks, blood in your poo and frequency or trouble peeing. There are of course many more.
Blood cancer can be insidious in the way it creeps up on you. Would you know what the main symptoms of blood cancer are?
Night sweats
Fatigue
Breathlessness
Bruising
Repeat infections
Unexplained weight loss
Lumps or swellings
We can rationalise these symptoms as being stressed, having a virus, being run down, menopause and a whole host of other things. GPs can miss these symptoms sometimes because they are so non specific. When you think about it, your bone marrow is the building block from which everything else flows from. Blood goes to every inch of our body to keep it going. So when the marrow fails and the blood going round is a bit off or a lot off the symptoms are going to be broad ranging. A simple full blood count blood test will yield vital information. If you have any of the above symptoms please ask for this simple test.
When it happened to me I was a fit young football playing woman with a young family and a responsible job. I noticed I wasn’t running as fast down the wing as I used to. The defenders were catching me more often. I’d be breathless and exhausted all the time. I could also bruise more easily. I just didn’t feel right. I went to my GP and she asked me to have a blood test.
The next day I was sitting at my desk in a corporate housing office when the GP rang. She questioned how much I’d been drinking and then asked me if I was lactating. I was shocked. For those unfamiliar with the word it’s when you produce breast milk following a birth. I laughed and said did she have the right patient. She said yes and I said “but I haven’t had a baby” She told me that my prolactin was very high and my red cells were very large. She asked me to repeat the blood test. It yielded the same result. Next she sent me to an endocrinologist and he prodded and poked me for a couple of years. Lots of my endocrine results were slightly off. He sent me for a brain scan thinking I had a pituitary tumour. That all proved negative. Eventually he admitted defeat but said the one consistent result was the large misshaped red cells and a low grade anaemia. He then packed me off to a haematologist.
The haematologist scratched his head and after a while said it was a possible MDS (Myelo Dysplastic Syndrome) diagnosis. Eventually he sent me to the specialist team at Kings who are a centre of excellence for this rare blood cancer and they gave me a definitive diagnosis of MDS. It took years to get to this definite diagnosis. I always say I’ve been dealing with all this for 24 years as it was in the year 2000 that Kings told me I had MDS. The truth is it was rumbling away a lot longer. I remember in my early and mid twenties being asked by the GP if I was drinking too much as my red cells were large and misshapen. This can happen with too much alcohol. However I am a disappointment to the alcoholics in the family. One and I’m anybodies, two and I’m everybody’s. Lol. I just can’t take it. It turns out that macrocytosis is also a possible sign of blood cancer.
When I was diagnosed there was scanty resources available on the internet. It was fairly depressing and scary. I learned that people on average live 2-5 years with MDS.
The following week after my confirmed diagnosis, I went off to my selection process to see if I’d be a suitable candidate for training to be a priest. It was a four day residential interview putting through your paces. There were IQ and EQ tests. There were observational activities where you’d have to chair a meeting or make a presentations. There were individual interviews plus panel interviews. It was all very intense. Of course in between some of these activities I would wander around the ground wondering if the 2-5 years prognosis would apply to me.
I was amazed to get through the selection process and I was recommended for training. I’d been arguing with God for twenty years that She must be joking. When I first felt a sense of vocation, women couldn’t become priests. Also there certainly weren’t any working class, lesbian street urchins who didn’t do books! Lol. I left home and school so early I never developed academic skills.
Being the feisty woman I am on the inside I decided to take the challenge of training. The process is a long one for priests and deacons. There’s a couple of years of discernment before you even get to the selection process. The theological academic training course is either two or three years. As I don’t even have an O level to my name I had to do the three years. Also I chose to do the training part time so I could continue to raise my young family and work to support them. Once you pass and complete these academic rigours, you then have a further three or four years of training where you learn your trade as a curate. After that you may go into parish ministry or some kind of chaplaincy. As you can see it’s a big commitment. So it was my way of saying “up yours” to the MDS and the implications.
I worked full time as a priest all the way from the end of my theological training in 2003 to 2016 when I had my transplant. There were numerous hospital admissions over those years and some really near misses with sepsis on several occasions. In 2016 it was decided I need a stem cell transplant after a particularly bad bout of sepsis. My sister came forward for testing and proved to be a match and my life was saved by the brutal process of the transplant. I still live with the effects as I now have many chronic comorbidities but I’m still here and still breathing. The cancer is in remission and I’m learning to live with all the effects.
As you can see I had a good quality of life with some serious dips all the way till 2016. That’s a lot better than the 2-5 years I saw on the internet. And now I can add another eight years to that. To those of you who are newly diagnosed remember that what lays before you is nothing compared to what is inside you. If I can get through all this, so can you. There is much better quality information on all the blood cancer charity webpages. Do check out the facts from the experts and patients and use these reliable sources rather than Dr Google. There are also some fantastic patient advocacy and support groups. Please use them and stand on the shoulders of the giants that have trodden this path ahead of you.
Today I may be a bit broken and battered but I’m still able to give and receive love and receive and reflect light. I believe the more light you let in the brighter your world will be. For all of those struggling, I’m holding you in the light.
