This blog is the continuation of my book “Life with GBM Brain Cancer: Blessing in Disguise”, published on Amazon world wide.
This book is a narration of my on-going struggle with the most aggressive of brain cancers called Glioblastoma Multiform (GBM). With half of the patients dying under 15 months after diagnosis, I feel lucky to have survived for almost 6 years, and looking forward to extend the life span as much as I can. In this book, I have shared my personal memoirs of the challenges of treatment , especially chemotherapy, and how with a unique outlook on life, nutrition and support from friends and families, I have managed to get dozens of stable MRI Scans of the brain till date. It is a story of looking for reasons to continue to live well and not let fear take over the body and spirit.
I shall aim to publish weekly postings on this blog to post the updates on my treatment, progress of my condition and other interesting facts worth sharing: such as nutrition, my research on latest treatments available to GBM patients etc.
Had yet another successful scan on 24th August this year and I was announced the result by my Oncologist Dr. Paul Mulholland almost a month later on September 26th over the telephonic appointment. The delay between the scan and the report was primarily due to the fact that firstly, with the divine grace, I am in much stable condition now and it not an “emergency” patient for NHS anymore. Secondly, with the unfortunate passing away of our HRM Queen Elizabeth, there was a public grieving across the UK for 15 days and my original appointment that was due on 9th September, got pushed to 26th.
However, Dr Mulholland continues to support me and congratulate me on my efforts to look after my health all the time and he reported as follows:
“I had a telephone consultation with Mr Singh today. He remains well. His MRI head on 24/08/22 showed stable appearances. Mr Singh will remain on surveillance. I requested an MRI head with contrast and will review him in 4 months with the scan result.“
As I publish this post in mid-October 2022, I can state that at the end of this month, I would have completed 7 years of survival, where the median rate continues to stay around 18 months. I am keen to keep my health in order and blatently planning to life rest of my life as if GBM never entered my brain!!
I also owe my survival and hope for longer life because of immense attention and care that I have received from NHS in general and Dr Mulholland in particular. Of course the blessings of my immediate family (my wife Anu, daughter Nimrat and Son Zoravar) continues – along with the weekly phone calls with my parents back in Chandigarh, who always give me dose of inspiration and motivate me stay a “peaceful warrior”. With so many positive forces around me, I see no reason of not staying positive and in bliss.
Looking forward to the next scan on January 10th, 2023.
My alma mater IIFT (Indian Institute of Foreign Trade), hosted an alumni meet of UK and EU chapter in London on Friday 8th July in Grand Royale Hotel, at Hyde Park in London. We have around 150 alumni living in the UK and the meet was attended by around 38 alumni. It was co-ordinated and hosted by Mr. Neeraj Dhingra of 1991-1993 batch.
The highlight of the meet was Dr Manoj Pant, the current Vice Chancellor of IIFT (VC because IIFT is a deemed University now) and head of alumni affairs Dr. Niti Chatnani (Ms.). It was an honour to meet them both. Since I am not working unlike everyone else, I reached on time and Mr. Dhingra introduced me to the Dr Pant and Dr Chatnani.
While we waited for the other alumni members to arrive, I had a privilege to talk to the esteemed faculty members and we ended up in discussing various issues, which I will mention in the paragraph after the next one.
During the formal meet, Dr Pant addressed the alumni and announced the he and Dr Chatnani are on tour to UK and then USA and seek co-ordination with the world’s best institutions that provide management degrees such as Cambridge University in the UK and Berkeley University in the USA. That was a very welcoming news as it would enhance the profile and reputation of IIFT even further, from the current standing as India’s number one institution providing post-graduate degree in International Business; under its flagship programme of Masters Programme in International Business (MPIB).
For that Dr Pant wanted IIFT alumni across the world to take an active interest in his proposal and support his initiative. He got a thunderous applause from the UK chapter of the alumni and sincere support from all the members present during the meet! After all, who doesn’t want to carry the prestige of his/her alma mater.
Coming back to the talks that I was having with Dr Pant before the start of the formal session, we happened to have touched on my illness (GBM Brain Cancer), that had rendered me disabled to an extant that I there were no prospects of me resuming my career in much stressful, London’s financial markets. Still, Dr Pant congratulated me for having survived much beyond the median rate of survival of 18 months. Dr Pant also advised me that I must keep working on whatever dreams I have and he encouraged me to read the memoirs of famous cricketer of India – Yuvraj Singh, who was so obsessed during his Cancer bout of very rare “Mediastinal Seminoma Cancer” (mediastinum being the area that separates the lungs. It is surrounded by the breastbone in front and the spine in back, with the lungs on either side), that he never stopped dreaming for going back to the Indian national Team and resume to play at international level yet again, which eventually he did.
That statement gave me immense boost and moment I reached home, I ordered the book and as I read it now, I really feel inspired from his courage and positive outlook towards life. I am certainly not interested in going back to the Financial Markets, but I do have other Software ideas in my mind that I am very passionate about.
Another reason that I got hooked with his story that we both belong to Chandigarh and when I was doing my pre-engineering (10+1 and 10+2), Yograj Singh’s son (everyone in the city knew about Yograj Singh – a talented cricketer whose career was cut short due to his aggressive personality) used to come to my DAV College in Sector 10 of the city to play cricket with the students of DAV college- 6 to 7 years older than him.
From the main gate as I would walk to my class, I could see him playing but of course never paid too much attention at him, except a cursory glance. In his book he mentioned that he was never interested in attending classes and was obsessed about playing Cricket – perfecting his sixes. I, on the other hand used to rush to the trigonometry class to learn about length, height and hypotenuse. In other words what I was learning at that time, he had started to “execute” them in the cricket field. I know these were our respective “pitches” and we both did well in our respective domains. Neither of us have any regrets on our lives and that is something common between us!
In my mind and spirit, I congratulate Yuvraj Singh and pray to the divinity to keep blessing both of us with good health and positive spirit!
Even though I should have posted this MRI Scan result much earlier, but it was all procrastination on my behalf.
Anyway, the MRI Scan was performed in UCLH (University College London Hospitals) on Saturday 07 May 2022. It was a normal torture to the body under the scanner and turned out to be the longest running scan ever, making me continuously speculating on the outcome of the scan.
The result of the Scan was announced to me over the phone by Dr Diego Ottaviani (Dr. Paul Mulholland’s team member) on 8th June 2022. During these 30+ days, I was on constant speculation of the result. Even though I was feelling normal in my mind as well as in my body, but the speculation was filling me with some anxiety.
Dr Ottaviani, ended my speculation (and anxiety) when he announced yet another clean scan and I took a very deep sigh of relief.
In his follow up letter to me and my GP he commented.
“It was a pleasure to review Mr Singh over the phone today. I am pleased to note he remains well. His MRI head on 7/5/22 showed stable appearances. Mr Singh will remain on surveillance. I requested an MRI head in August and will review him in 4 months with the scan result.”
Soon afterwards, I received yet another appointment for Scan due dated 24th August, 2022. This upcoming scan is very important to me because at the end of October this year, I would be completing 7 years of my survival and winning over this Brain Cancer by making peace with it.
As I write these words, I look forward to the August Scan and hoping it to all clear (as I continue to feel normal), then my next target would be to complete a decade of survival i.e. on 31st October, 2025. And strategy for survival in the mean time? It is great and old British saying – Keep Calm and Carry On!!
My MRI Scans continued and the first scan for the year 2022 was held on Friday, January 21, 2022 at UCLH (University College London Hospitals) in Central London. As mentioned earlier, my Oncologist Dr. Mulholland who was treating me from MVCC (Mount Vernon Cancer Centre) from early 2016 till September 2021, had given me an option to continue my further scan at MVCC, with a new Oncologist or may opt to come to UCLH along with him, as he had opted to work from UCLH on full time basis and the primary reason was that Dr. Mulholland is one of the top Oncologist in the UK (if not in the world), and he conducts his own clinical trails from UCLH. It was no brainer for me to follow him for my further treatment, from where ever he is based. This time it was going to be in very centre of London, what I had earlier rejected as an option when my treatment had started back in January 2016. At that point, I knew, I won’t be able to survive the train journey to the ‘city’ from my home, that lies in the outskirts of London. But after getting dozens of clear scans, I decided to go for further scans at UCLH, as it was going to keep me in vicinity of Dr. Mulholland and his trials (should there be any contingency of seeking further/alternate treatment). Secondly, Anu, as always. was going to accompany me each scan so the overall risk to my health was almost nil.
After the scan, I was waiting very keenly to know about the results. Even though I had a strong feeling that it would be yet another positive scan, but in the GBM Cancer, there is a consensus across all the research faculties in the world that any patient who crosses the 6 years of survival are termed as ‘long terms survivors’ and amongst them, there would be a minuscule minority that can aim for a normal life span ahead of them as can be seen from the Survival. probability curve below. After 6 years, the curve starts to stabilise and it can be deduced that there must a tiny percent of minority that is going to survive beyond 10 years after the diagnosis. I plan to be amongst those survivors and I desire that a lot – I want to live a normal life from here onwards as if Cancer never entered my brain. In fact that has been my strategy even before I had started the Chemotherapy back in the winters of 2015, almost seven years ago.
Kaplan-Meier survival plot of patients. Source: https://www.nature.com/articles/s41598-019-56574-w/figures/1
As expected my result was announced as yet another clean scan on 14th February, 2022, that made me thrilled. I keenly searched the Internet for the longest GBM survivors across the world and found few impressive personalities. A couple of them who turned out to be my favourites are:
Dr. Ben A. Williams, PH. D. (in psychology): One can read about him at https://www.glioblastomamultiforme.it/en/the-story-of-ben-williams/. He was diagnosed with GBM back in 1995 and published a wonderful book with a title of “Surviving “Terminal” Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won’t Tell You About”. I read this book during my treatment and it inspired my a lot. He has survived for 27 years so far which I found very incredible. When I read his book, I found the keen interest he took to research various drugs that he would then propose his own cocktail of drugs to his Oncologists. Of course, I had no such faculty but incidentally my Oncologist Dr. Mulholland also gave the same cocktail of drugs that cured Dr. Williams. It is called PVC (Procarbazine, CCNU (or lomustine) and vincristine).
Cheryl Broyles: One can read about this equally impressive lady at https://endbraincancer.org/cheryl-broyles/. My second hero who was diagnosed with GBM in year 2000, is five years short of Dr. William mentioned able. She too has published her book with Title “Life’s Mountains” (she is a keen mountain climber). I am looking forward. to read her book and shall buy it very soon.
I must also mention a wonderful book that I read during my very early days of treatment titled “Anticancer: A New Way of Life”, in which a brilliant French physician and neuroscientist (and of course and author too), Dr. David Servan-Schreiber, gave tips on ‘super-healthy’ diet tips to beat Cancer in its own move.The book argued very elegantly how certain foods (fruits and vegetables) have ‘anti-cancer’ properties and can become highly potent complementary therapy.
Unfortunately, the world lost Dr. Servan-Schreiber in year 2011, after 20 years of his GBM diagnosis. I still follow his book to plan my diet as my tribute to the great professor.
My next MRI of brain is booked in UCLH on April 1st, 2022 and I look forward to get clear scans subsequent to that. Also, my aim is to contact my heroes that include Dr. Ben Williams and Cheryl Broyles, once I have completed a decade of my survival.
During my scan meeting with Dr Mulholland on September 9th, 2021, he had advised me to contact a Brain Cancer charity/trust of the UK named ‘Braintrust’ (https://brainstrust.org.uk/), and gave the contact details of its co-founder, Dr Helen Bulbeck. I wrote an email to Helen in mid September and received an instant and ‘very encouraging’ reply from her. She had enrolled me in the GBM Group in the Charity that was being headed and co-ordinated by Jane Gardiner. After setting me up on the system, Jane invited me to the virtual meeting of the GBM patients over Zoom.
In the first session on 23rd September, I introduced myself to the group, discussed my condition and what exactly I did to have survived six years so far (longest in the group)! I attributed my humble performance to the strict diet regime I had during the illness and how I managed to stay calm and relaxed during my illness. Moreover, how I deflected the thoughts of death by reading serene and ‘spiritually’ uplifting books, listening to gentle Indian classical music, my engagement to work on my websites and my book and last but not least, my constant bonding with my wife Anu, son Zoravar and daughter Nimrat.
The highlight was the eagerness of all other participants about the book I had authored and I shared the link from where they can buy the book. I felt elated!
Since it is a monthly get together, after having introduced myself in the 1st session, I am looking forward to participating in the second one that is due on October 28th, 2021.
Dr. Mulholland had fixed the next scan date on September 3rd, 2021. I had settled down in my ‘garden house’ and had started to create the second edition of my book, along with the Hindi version of my website bjmanch.in and made it available at https://www.bjmanch.in/hi/.
However, there have been a couple of minor issues that had upset my son Zoravar and eventually her mother and my wife Anu. Though the issue has been very minor, but I had ended up scolding him badly, that had upset him and consequently I had been warned by Anu that I do not know how to be a good father. That made me feel guilty for firstly, upsetting my son, whom I love dearly otherwise and feel immensely proud of, and secondly, upsetting my wife Anu, inadvertently, when I knew how hard she has been working since my illness, not only on her job but also looking after her family – including me of course, and not to mention both Zoravar and Nimrat. Anu was going to raise this family issue with Dr. Mulholland and she did.
Following the appointment with Dr. Mulholland on September 9th, my GP Dr. Gould received the following report from Dr. Mulholland:
It was a pleasure to review Mr Singh in clinic with his wife, Anu. I am pleased to note that he is well and there are no new issues. I am pleased to note that the most recent MRI showed stable disease. The patient and his wife are pleased with the result of the scan. Patient’s wife mentioned some issues around family dynamics. I recommended to the GP to discuss a referral for family counselling. I have offered the patient to be transferred to UCLH for further follow-up. Mr Singh is going to contact the secretary there to organise a transfer. I will see him there in two weeks’ time.
No doubt the report was a good news and I felt great that I am on verge of completing six years of illness on October 31st, 2021, given that my Craniotomy was performed on the same day in year 2015.
But, Dr. Mulholland had directed a pointer towards me to arrange for a family counselling, through my GP Dr. Gould. At the time of completing this post, I had made a request to my GP , via my surgery and was waiting for an appointment with him. The surgery (and Dr. Gould) otherwise provides fantastic services all the time, but this time due to COVID urgency, my request had been put in the queue. In the meantime, realising how difficult is for Anu to be patient all the time, I had stated to control my behaviour and had mange to stay calm and affectionate with Anu, Zoravar and Nimrat.
Another change in my treatment protocol has been my option to stick with Dr. Mulholland as my Oncologist, even if I have to travel into the city centre on London Underground trains to UCLH (University College London Hospital), instead of the outskirts of the city at MVCC (Mount Vernon Cancer Centre) in Northwood. I agreed to this arrangement because I felt that I have come a long way since 2015, and was feeling heathy enough to travel to the city centre during the ‘off-peak’ hours.
Since I was rendered disabled as far as travelling and working in the London city was concerned (also mentioned in my book), I decided to launch my Internet based ventures, that I have always been passionate about, staying at home. The two websites that I have launched so far are as follows:
www.GDFNow.org
GDFNow.org actually stands for “Good Deed Feed – Now”. It is a not-for profit social networking portal that aims to connect the positive acts (Deeds) being performed by the Individuals and Groups of Individuals, and build a culture where these Deeds get rewarded by Businesses, Government Agencies and NGOs. By rewarding the Deeds and their doers (Deeders), we believe that doing deeds will turn into a mass movement across the world and will motivate more and more people to become Deeders and contribute to make this whole world a better place to live in – for all of us – and Environment that is getting deteriorating rapidly.
www.BJManch.in
Bhartiya Jantantra Manch, launched for India only so far, is a world’s first ever, apolitical, Internet Portal to revolutionise Democracy for the new era – effectively making the traditional political parties redundant in this era of Information Technology and with an aim not only to to care for ALL of our population but also to revive our lost environment and nature!
The Manch is “of the people, for the people and by the people” – available 24X7 and people will nominate and choose the candidates for the parliamentary and state assembly elections, who in turn will choose the Prime Minister and Chief Ministers, as per the provisions of our (Indian) Constitution.
