Are you shocked and horrified when researching online?

My name is David. I am 47 years old and from Brighton, Sussex. 

Initial Discovery and Monitoring

During a routine CBC Test in 1999, the doctor discovered a slightly low platelet count (136). All other Complete blood counts were normal. Then, 18 months later, they found a slightly low Neutrophil count during another routine Anaemia Test check-up (October 2000). My GP referred me to Haematology at my local hospital (RSCH in Brighton). I have been attending there for monitoring every few months ever since.

During that time, my platelet and neutrophil Anaemia counts have slowly decreased to moderately low values. I also had a couple of bone marrow biopsies: one in 2003, which was okay, and another last year. Each of them had slight changes but no anaemia level in the diagnostic. Otherwise, I have remained generally well and have always worked full-time.

Progression of Symptoms and Diagnostics

However, after a CT Scan last Autumn, it was discovered that my spleen had become slightly enlarged. Then, my consultant referred me for an anaemia test appointment at King’s College, London, as she said they were the experts and would be able to pinpoint the problem.

A month ago, I had my first appointment and underwent another bone marrow biopsy and various blood tests. The consultant told me that MDS was suspected. Naturally, I was shocked and horrified when I researched online.

Receiving the Diagnosis

I had to go back yesterday (26th) for the results and have been told that my diagnosis is MDS Subtype RCMD with 3% blasts and an IPSS score of 0.0, currently low-risk. I currently do not require any treatment, just a watch-and-wait basis with check-ups every 3 months.

It was not a total shock today after being told a month ago what was suspected, but I don’t think it has sunk in yet! Even though I am currently low-risk, I am still scared of what the future holds with this disease.

My only symptoms in recent times have been periods of fatigue and muscle pain/weakness.

It would be helpful to hear about other patient’s experiences.

Take Care

For David:

Empathy and Connection

I’m so sorry to hear of your CBC Full Test diagnosis, and it is perfectly natural to feel the way that you do. You’re in very good company, and it must be said that when you go on the internet and Google it, it can be terrifying simply because it is such a complex disease. With five different variants of MDS with varying high and low-risk Amaemia prognoses, it really can be alarming. It’s a case of too much information, with only a small part relating to your condition. 

Similar Journey on “Wait and Watch” Approach

I also follow a ‘CBC Wait and Watch’ or, as Chris calls it, ‘active monitoring’ regime. Thankfully, I have one of the lower-risk forms of the disease, i.e., MDS with del 5q. I received the diagnosis last year and underwent all the emotional trauma you’re now experiencing. You will settle into an acceptance mode once you have taken back control of your life, and I’m sure you can do this in several ways. For instance, I have become more mindful of what I eat and drink. I’m a great believer in the fact that we are what we eat, and so I have always eaten healthily. Still, even I have fine-tuned my diet, not only because of my MDS but because I also have an inflammatory condition and some other Anaemia health issues, and I have found this has helped.

Embracing Eastern Philosophy and Practices

I have also personally gone down the alternative CBC health route by seeing a Herbalist, which I know doesn’t sit too well with the conventional medics, but at the end of the day, what have I got to lose? I have no idea if this has made any difference to my MDS other than the fact that my blood seems to be holding up pretty well, and I have to say that I’m not as tired as I used to be, but then that might be just down to being positive about life again.

I’m not saying this is what you should do, but I think if you could focus on doing something that will help your whole being, which is the Eastern way of treating the body, you may feel more at peace with yourself and your Anaemia condition. I believe in the power of meditation and relaxation, as the mind can be responsible in many ways for worsening a physical condition by getting stressed about it. It is draining you of energy that you could use more positively. 

Seeking Support from Complementary Therapies

What I’m trying to say may not come across clearly, but if you can refocus your mind to regain control of your physical and mental state, do it. For you, it could be exercise, gardening, cooking, or anything that brings you joy. Despite relying on the medical profession, our well-being is ultimately up to us.

My husband and I went to the Penny Brohn CBC Cancer Care Centre. This charity deals with complementary methods that can help cancer patients, i.e., relaxation and meditation, diet, exercise, massage, etc., and we found it very helpful. We also met other patients who had various forms of cancer, and we all agreed that it enabled us to deal with our health issues a lot better. And I now sleep like a baby. 

Resilience and Moving Forward

It is a case of not letting your Anaemia disease define you. When I was first diagnosed, I was in a state of shock and disbelief, and even now, I get times when I think, is this happening to me, but then I move on to the next thing you are doing. And I try not to dwell on it and put it back in my mind.  

The one thing we must all do is keep sight of ‘hope’.

I’m sorry to have rambled a bit. I hope my comments on CBC solutions have helped. 

With very best wishes.