Christine: I have been most fortunate with my health and never had any serious health issues before
My name is Christine Cain, aged 69 years old, a retired PA in Public Health and I live with my extremely caring husband Tommy, in Suffolk and we have been married for 51 years. We have a 38 year old daughter, Rebecca, who has suffered from ME/CFS since she was 16 years old. With great determination, she achieved a BMus Hons degree at Trinity Laban Music College, Greenwich, where she was a Violinist, but very sadly, since she was 24 years old, she has not been able to pick up her violin. Her ME/CFS is severe, she lives independently, but we both support and care for her on a daily basis. I just wanted to give you some background, before I explain how I arrived at my diagnosis of MDS and the extreme concern of my health going forward, as not only has my diagnosis caused severe and overwhelming shock to my husband and I, but also the impact it has had on the health of our very caring and unwell daughter.
I just wanted to say that I have been most fortunate with my health and never had any serious health issues before, for which I feel lucky and very grateful, until I recently received the bombshell diagnosis of MDS - EB1, following a Bone Marrow Test carried out in June 2020.
I decided in January 2020 to query these "Abnormal blood test results" with my GP
I shall just recap as to how I reached my diagnosis and hope that you may find these details of interest. In May 2019, I saw my GP, as I developed Laryngitis symptoms which lasted 8 weeks and he suggested a Full Blood Count, amongst other blood tests. The test came back as ‘Abnormal, to be expected, No further action’ and both my haemoglobin and Red Blood Cell results were below the normal range. My GP suggested an endoscopy, where I was informed that I had a Haitus Hernia, for which I am taking the appropriate medication. I also mentioned to my GP that I had more than the usual ‘palpitations’ and he discovered a ‘Heart Murmur’, so I had the necessary 24 hr ECG and Echocardiogram and was then referred to a Cardiologist, who then informed me that my Heart Murmur was ‘Innocent’ so I did not need any further treatment.
From May 2019 – Dec 2019, I had five Full Blood Count tests carried out at my Surgery and they were all ‘Abnormal……’ and I decided in January 2020 to query these Abnormal blood test results with my GP, as I am a very inquisitive person and have always been problem solving throughout my life. My GP suggested that he could ask for ‘Advice and Guidance’ by email from Haematology at my local hospital and they requested more blood tests to be carried out and then asked my GP to refer me to them. I had my first appointment with my Haematologist in March 2020 and he said that as my Haemoglobin and Red Blood cells had been stable since May, 2019, he didn’t think that I had anything seriously wrong, which would cause my anaemia. I had no symptoms at all, apart from being told I was anaemic and it was decided that I should have an Ultrasound Scan of my spleen to make sure that it was not ‘enlarged’, but my Haematologist did not expect to find anything untoward and thought that he would probably be able to discharge me in June 2020! He was correct, my spleen was a perfect size and all the other organs were also fine.
At my follow up appointment in June 2020, which was over the telephone due to Covid – 19, a Registrar in Haematology arranged for me to have a Bone Marrow Test, to ascertain the reasons for my anaemia. This, I had carried out on 25th June, 2020 and I patiently waited for my results, but was told that they would be delayed because genetic testing was also to be carried out and it would be several weeks before the results would be available from Cambridge Addenbrookes and following these results, my case would then be discussed in an MDT (Multidisciplinary Team Meeting).
I became more impatient and extremely worried, so I started to research my symptoms on various websites and I became very concerned as to why I was not told the outcome from the Bone Marrow Test, so I insisted that I should meet with my Haematologist to receive at least part of my result and be prepared to wait for the genetic test results, which he said would give me a correct diagnosis and prognosis.
It was at the face to face appointment with my Haematologist on 21st July, 2020, at which my wonderful husband accompanied me, that I was given the bombshell that I had MDS, but he reiterated, that I would have to wait until September before I would know the exact diagnosis and prognosis, as Haematology were waiting for the very important results of the genetic testing. I was also told that the bone marrow test had shown features of Myelodysplasia with excess blasts. It was also explained that this is a bone marrow disorder associated with a pre-leukaemic phase with a tendency to transform to leukaemia, based on the risk category. I had been wondering why a Clinical Nurse Specialist was sitting in on my appointment and she was making notes during the consultation, but afterwards I obviously understood the reason! My Clinical Nurse Specialist then just handed me my red coloured MDS UK Supporting Patients with Bone Marrow Failure ‘Understanding Myelodysplastic Syndromes’ Patient handbook and we were then sent on our way!
My husband and I obviously read this extremely informative, but very scary book, from page to page and we spent the next few days, with our very unwell daughter, discussing how bad my diagnosis could be and the thought of waiting another two months for the final results and diagnosis/prognosis, incorporating genetic testing results, was almost unbearable!
The day I phoned Sophie at MDS UK Helpline
Sophie, MDS Patient Liaison and CEO & Sophia, Midlands Group Coordinator
After having read my copy of the MDS Handbook, I decided that hopefully Sophie, Patient Liaison, would be able to offer me some support and assistance.
I left a voicemail and on the 14th August, 2020, received the best phone call ever from Sophie, who gave me hope for my future and I felt that I had just been through an incredible Counselling Session, so caring and supportive, as we chatted for 40 minutes!
In our conversation, Sophie then said that I need to ask my Haematologist to refer me for a second or additional opinion from Professor David Bowen at Leeds Hospital! For once, I felt that the much needed help and empathy could be on its way!
I eventually chased my Haematologist for an appointment to discuss my genetic results in my Report from the Multidisciplinary Team meeting, which was held in Cambridge Addenbrookes on 24th August and which I had read myself on my ‘Full Patient Record’ on my GP Surgery’s Website, of which I have the appropriate access. I then had my follow up appointment with my Haematologist on 15th September and I asked him to please refer me to Professor Bowen for a Video Call following the suggestion from Sophie, Patient Liaison.
Video Call with Professor Bowen
Within a couple of weeks, I received a date by email for my Video Call from an extremely efficient and most caring member of Haematology in Leeds Hospital and I was told it would take place on 21st October at 10.00am.
My husband quickly purchased a WebCam to enable me to take part in the appointment via Video with Professor Bowen. I must admit, we have never been involved in this type of technology before, but would highly recommend this type of appointment, but I can say that I was more worried about the technology working than I was about the interaction with Professor Bowen! The process was so simple by just placing the small camera with microphone on top of my monitor.
At 9.50am, I inserted the Haematology Website into my search engine and then it produced a screen, on which I could insert my full name, date of birth etc and as soon as my details had been validated, a voice told me that they knew that I was ‘Waiting In My Own Private Video Room’ and this message repeated, probably 3 times in intervals! Then at precisely 10.00am, Professor Bowen appeared on the screen in front of me. He said ‘hello’ with such a friendly voice and checked that I could see and hear him and everything worked so perfectly and enabled me to relax, knowing that this brilliant technology, with excellent software, was working well! This was so much better than sitting and feeling tense in a Waiting Area of a Hospital to speak with my Haematologist!
Prof. David Bowen
Professor Bowen was so very caring, showed empathy throughout our conversation and discussed this rare disease with me in great detail.
It was so good to be speaking with a person, having 30 years’ experience of MDS. The Professor made my consultation personalised for me and I felt so relaxed throughout my one hour appointment.
At the beginning of my appointment, Professor Bowen asked me if I could give him the background of how I knew about my anaemia and how I eventually received my diagnosis.
I had already made lots of notes for this extremely important call, which were in front of me, but luckily, I memorised it all in chronological order and this Video Call was the best Consultation I have ever had with a Consultant and I truly mean this. After discussing my diagnosis and genetic test results with the Professor in much detail, he said that I should be ‘cautiously reassured ‘ going forward, but he said that he does not have a Crystal Ball! As I do not have any symptoms at the moment, I shall not need any medication for now.
Professor Bowen also discussed the various treatments available if and when my blood levels drop down in the future. At the end of my Video Call, the Professor confirmed that he will follow up with a letter to my Haematologist, GP and a copy to myself and he will be suggesting to my Haematologist that I have a repeat Bone Marrow Test in January/February 2021 and also suggested that he speaks with me after the results are known, following a ‘further referral’. I shall also have repeat blood tests carried out and for now, I remain on ‘Watch and Wait’.
I wish to thank you for reading my lengthy story of how I reached my diagnosis of MDS and hope that it will possibly be helpful to you and I also hope that you would not feel worried or concerned about taking part in a Video Call in the future and having the opportunity of an additional or second opinion from a ‘true expert’! As you can probably tell, I was so very impressed and it was so easy to make the connection for my Video Call and I feel so relieved having spoken with Professor Bowen, who showed so much empathy and kindness!
My husband, daughter and myself wish to thank Sophie, Patient Liaison, so much for all her kind help and expertise that she gave to me. We are all truly grateful and I am so glad that I have become a Member of this excellent and very informative MDS Patient Support UK Group! I certainly found all the paperwork I received in the post very interesting and most helpful and it was really beneficial for me to read all the ‘Patient Stories’ in the various Newsletters and also gave me the opportunity of finding out which medications were available for various MDS Sub-Types.
Many thanks to everyone, Christine Cain