The Journey
"The story behind PREVNT"
2 years ago my father complained about a sharp pain just below his belly button towards his right side . He felt some lumps, he and the family put it down to the fact 6 months prior he had an hernia operation and that it could be the hernia flaring up.
The pain became unbearable as my father was always a strong minded person and previously to his hernia operation never attended a hospital some 74 years. We rushed him to A&E and they ran some blood tests and they suspected then that he had some sort of cancer as the markers in his blood tests showed a lot of anomalies associated with cancer . He was referred to an oncologist at the earliest.
I made a concerted decision that I would take my father to all his consultation meetings and this first one was one of the most poignant as it imprinted itself on my memory.
We went in to see the consultant Dr Ladani at Leicester Cancer unit – what a great consultant she turned out to be. She looked at my father and remembered she felt an instant connection with him. She put him at ease and told him that she had looked at his results and confirmed that he had stage 4 Lymphoma cancer. We were both shocked and my heart sank for my father at that moment even though I was expecting the worst . After a few minutes passed which felt like years , I told myself this is just the starting we have to beat this and stay positive . So I told my father – “Dad, get ready we going to beat it”, my father also being a very positive person all his life, said “Yes son, we will” .
My father was a sikh so he had his turban grew his beard and hair for decades , and all he asked me was will my hair fall out son with this chemotherapy , to which I replied back with a heavy heart “yes dad the chances are high”, and I could see his heart had sunk at this moment but I could not have told him anything which was not true as that would have created problems later when the chemotherapy cycles would have taken its toll on his hair and beard. To Sikhs their hair and beard is sacred.
That then began the journey he started the 1st line of the treatment which in his case was chemotherapy.
The Chemotherapy journey
My father being strong for his age – he lived a very active life and ate well , which helped him in the first four cycles of the chemo. By Cycle 5 we could see him struggling and we as a family did all we could by getting high calorie shakes , giving him a variety of foods in small portions as we always told him to keep eating even if it was 10 times a day but just very small portions . He battled through and completed the chemo 6 cycles . He was then sent a few weeks later to get his CT scans, PET scans and MRI scans. We were then called about a month later to see the consultant.
Visit to the Consultant - Remission
We both entered the consultants office , my father feeling much stronger and better within himself . We sat down with Dr Ladani, looked through my fathers scans and turned around after a few minutes and said to my father “ Mr Singh – good news you are in remission – all the scans look clear and your blood results are all normal. WOW I said to myself in my mind and I felt like a big relief had come off my shoulders that we did it ! I remember seeing my fathers face , no emotion but thankful to the Dr and he said I do feel stronger and I will now start going back to doing unconditional service at his local temple . For almost a decade my father used to devote his time to the local sikh temples where he would go and clean the dishes for hours and hours . Many people used to ask him why doesn’t he join the temple committees but my father refused and said – I want to just live a simple life and devote myself to serving God unconditionally. I remember this day was so good that I felt we had won .
But was it the best day ever ? Will explain later why it wasn’t.
The cancer had returned – with Vengeance
We went to see the consultant and Dr Ladani , invited us both to sit down and I could tell from her face this was not going to be good . She looked at my father and examined him first and realized the lumps had come back and there were more of these lumps than previous. My father at this stage still putting on a brave face and being positive asked the Dr what was the prognosis .
Dr Ladhani after examining my father sat down and said “Mr Singh the cancer has returned and is aggressive and that the options were limited . I had done some of my own research before this meeting and then proposed to the Dr that why doesn’t she put my father on the T cell immunotherapy trial as his type of cancer was perfect for this type of treatment. Dr Ladhani pointed out that the places for this type of treatment were very limited and that the therapy alone would be over £300k per patient. The only way was to see if they would accept my father on this treatment, which meant going to Birmingham Queen Elizabeth’s Cancer hospital.
Dr Ladhani did not waste any time infront of us whilst we were there she called the team at Birmingham and within a week an appointment was arranged .
I remember from this meeting feeling like I had achieved something , thinking that if I had not done my research prior to this appointment the Dr would not have recommended it, so by challenging the process I got my father a chance of recovery / treatment, but I felt as if I had to fight for it . I did make my father aware of this option of treatment before we attended the appointment, it gave him belief also which was all positive especially the mindset.
Infection Journey 1
My father I remember within 2 days of visiting the consultant contracted an infection and was in hospital for 4 days , the doctors gave him courses of strong antibiotics, and when his markers were back to normal they discharged him. They gave me a prescription to collect from the hospital pharmacy – when I collected it , it was like 3 shopping bags full of medication!
The T-Cell Journey ( Short lived )
I recall taking my father to Birmingham to see the consultants heading the T Cell immunotherapy treatment. My father wasn’t in great shape as he had just in recent days been discharged from hospital after fighting an infection. I parked some 100m away from the entrance of the department , and I remember my father walking gingerly towards the entrance . I said to my father “ dad please you have to get positive you have to show the consultants that you are strong to take this treatment”. He replied back “ yes son I know and I will try “ .
We were called in relatively quickly to see the consultant. The team was brilliant. All the nurses and doctors who handled this T Cell immunotherapy were well versed and trained. We sat in front of this middle aged consultant , who told my father what the processes were going to be and that his cancer was perfect for this type of treatment. He did look at my father up and down like a airport body scanner so many times and then he said to us – “ I will need to ask the senior consultant for his opinion on your fathers state of mind and body”, my heart sunk and I said to my father – don’t worry dad when the senior consultant comes in tell him what you feel “.
The senior consultant arrived into the room , he was an Indian doctor and he asked my father in Hindi how he was feeling today , and then asked my father what physical work he does during the days and how much he walks . My father replied back “ I do some gardening work and walk around the house and garden, and I just walked the 100m from over there where our car was parked as you could see from the consultants room . This consultant then said OK Mr Singh . Both the consultants went to the end of the room by the entrance door and discussed matters as we looked onwards. After what felt like 30 minutes but was like 3 minutes , they came forward and said “Mr Singh we are happy to say that we will select you for this immunotherapy , but they stressed that he was on the borderline.” I remember feeling so elated and did a small prayer in my mind to the Lord to thank him. They told us to return within 2 weeks to start the therapy.
Infection Journey 2
Around 7 days after the T cell therapy consultation – my father contracted another infection and was hospitalized for 5 days, again they pumped him with antibiotics and now we started to think do these junior doctors know what they are doing . We could see my father losing a lot of weight and struggling. The nutritionist was called and came to see my father , delightful man who oozed positivity , recommended that my father start on some high calorie shakes I think 5000 calories per shake, and I thought then that would be great my father could put on weight quickly with those shakes , and I also then started to look for other food supplements which could aide with weight gain. ( But later I will explain how this was all a false hope). They discharged my father and again I collected a further 3 shopping bags full of medication – I think at this point I had probably more medication than the local pharmacy – and they are doing this to everyone who has suffered infections through cancer treatment ! Also when we took my father in we had to wait in the waiting area and another person also was discharged early suffering from an infection only to come back in , and at this moment I thought why is this happening to everyone who’s getting an infection during the cancer treatment being discharged too early after seeking treatment for infections only to come around like a vicious merry go around that they don’t come off from ! The cost to the NHS and drain on resources – one can only think why .
The day the Immunotherapy was to start
Another day I will remember and take to my grave , I collected my father who lived 3 minutes away from me . My dad greeted me and said let’s go and I recall he darted towards the car and sat in the passenger seat. I thought to myself that my father was excited and eager to go . My sister also accompanied us on this journey and sat at the rear .
As I drove towards my house there was a set of traffic lights , I stopped as the lights were red and I turned to my father and said “ dad so you feeling happy that you starting this T cell therapy” , he didn’t respond , and then I said “dad you ok?”, no response and all saw was my father looking forward with his eyes open and expressionless. I thought, “ Oh God , what is happening?” Lights Turned green and luckily there was a filter lane , so I pulled into it . Stopped the car – took my seat belt off and tried to nudge my father, but got no response. I remember my sister crying saying “ dad has died” , I said no I can feel a pulse . I then thought to myself he’s gone into some sort of shock , I had some sugar sweets and told my sister to give me some water .
I pulled my fathers upper lip up and soaked the sweet into some water and then rubbed it onto his gums. After about a minute my father closed his eyes and mumbled . I asked my sister what shall we do – we can’t go Birmingham now to the T cell therapy , as my father would never have made it. So we decided to drive him to Leicester A&E .
I can’t even remember the journey even though I drove , as soon as I pulled out in front of A&E , I asked for help and luckily there was a firefighter close by who helped me pull my father out the car and by that time my sister had got a nurse with a wheelchair and my father was taken straight into A&E . We accompanied him , and I was so grateful to the fast actions of the firefighter and nurse .
The team of doctors and nurses in Leicester A&E were fantastic , they had stripped my father down , put him on what looked like 100’s of machines , and I remember the senior consultant coming in to the room and saying “your father has suffered a sepsis attack” , for the next 5 to 6 hours I can’t fully recall the time , but one indicator was burnt into my brain which was his heart beat never went below 250 beats per minute for that long ! That showed how strong my father was until that moment. Slowly after some really good work from the hospital team my father came around but I could see he was not himself no more . They had to give him a set of new antibiotics to stabilize his condition. I think this was the moment when my father wanted to or did let go of the fight, but I said to my father we still have a 2nd line of defense .
The 2nd Line of Defense
We spoke to the Chemotherapy specialist nurses and my fathers consultant about the 2nd line of treatment as now a decision was made that my father was too weak for the T Cell therapy and could not pursue it any further . So the 2nd line defense is more of extending life not eliminating the cancer , which at that point I did not know. All I was told was that the drugs used in this 2nd line were very expensive and strong. Don’t get me wrong we had to push hard for my father to get the first cycle of this 2nd line chemotherapy treatment as all the professionals were adamant no . But my sheer determination and positivity for my father to win and stay alive and get rid of his cancer drove me with passion to get him this treatment, (was this selfishness on my behalf ? ). The 2nd line treatment began and I remember it being administered in a small black bag and one doctor told me that the drug was £20k and I thought wow – why so much why ? Treatment went well , my father had minimal side effects with it . His lump in his neck had reduced a lot and we were all positive that this was working well.
Last days in hospital - discharged
We knew as a family that the doctors would not agree to the 2nd cycle of 2nd line chemotherapy , but we had to put a brave face on for my father who at this point truly had enough and wanted it to end. But I did say to my father that we will ask if they will give him this 2nd chemotherapy cycle, I think deep inside he had already made his mind up, but he portrayed to us a positivity which was like day one of this journey . I remember when the consultant and senior chemotherapy nurse came they both had formed a close friendship with my father who was a loveable person for all . They said Mr Singh – we are sorry but this is the end of the road , we cannot offer anymore treatment as it is not fair on you and will not prove your situation. I remember those words and I remember my father who understood English well asking me in his native language Punjabi – “son what did they say” , and I said “dad let’s pack your stuff and let’s go home dad”, this was the hardest thing I had ever had to say to my father , but at the same time we all felt a big relief – like a big weight had lifted from us all. We packed my father’s belongings and remembered my father saying farewell to all the nurses and particularly the consultant Dr Ladhani.
Last days on this Earth Plain
My father came home and we received the calls from the palliative care team and they told us that they were there when we needed them. My father returned back on Wednesday , and on that weekend he asked to go in his wheelchair to the local park where he used to walk everyday for decades . He was so happy and met some of the locals , it was as if he got a burst of internal soul energy – it actually felt like he was never ill – very talkative, very upbeat and happy. On Saturday evening we arranged to have a gender reveal party as my son and his wife were to have their first child. My father ordered some food for everyone and when it was revealed that they were having a baby boy my father started to cry and said he was so happy for them ! That was to transpire as the last takeaway we had together and the last football match we watched on sky tv. On Sunday my uncles and aunties came to see my father again – he was full of energy and engaged fully with them all . That night was horrendous and we had to call the palliative nurse out at around 2am in the morning as my father had turned for the worse and the pain and breathing he was experiencing was so hard for us to watch . This serious nurse came and she was a godsend person. The knowledge she had about the drugs and what she told us we could not believe , what palliative care was about, which I will explain later.
She made my father comfortable, and then on Monday morning when my father was awake another palliative nurse came and organized the syringe for him , which basically was to automatically administer a small dosage of the palliative care drugs . We told her not to prescribe one of the drugs that stops all secretion in a person , we found that to be highly inhumane , imagine one cannot secrete tears, sweat, spit , that is like dying in a desert without water ! Once the nurse had finished , my father said to her “thank you”, and we were taken back as to why my father said that , but we later knew why . He peacefully passed away on Tuesday morning , and we were all by his bedside and just before his last breath a small tear formed on his right eye and when he took his last breath the tear came down his right side and that was the last act from my father , beloved bittersweet end in the tear , bitter he had to leave us and sweet that he had joined the afterlife .
3 month later After Soul searching
After my father had passed away I did some serious soul searching , questions after questions as to what we could have done better. Why did we not catch the cancer earlier ?
Why stage 4 ? Why not stage 3 or 2 or 1 ? We as a family had no history of anyone having this cancer , so why did my dad get it ? What did he do which caused him this issue ? Was it because of the alternative homeopathic medicines he was taking ? Was it because of all the you tube videos he used to watch on alternative medicines ? so many questions were going through my mind. But the key points that really got me was the “pivotal moments” , which I will class below .
We recommend getting DNA testing done to detect & prevent diseases even before they occur.
Remission News
When we received this news we as a family all were so happy and relieved that we at this point took our foot of the gas ! when we should have kept it on ! Remission doesn’t mean the cancer has disappeared , it means it’s in remission – but the word gives us a false sense of security that we have won!
At this moment, what I should have done as a son , was say “dad, that’s brilliant news, but every month from now on we will get your bloods tested” .
Early detection
Why – because when my fathers cancer came back the 2nd time it was more aggressive and we were at least 3 to 4 months behind the curve ( cancer ) , now if we had tested him every month we would have been no later than 1 month behind as we would have picked it up in his blood tests .
The 2nd line of treatment would have been much more effective and less damaging to his body .
So hence why we are now at PREVNT asking anyone who reads this article gets touched by it , to please do this so that they get better their chances and their loved ones chances of having a better life/ outcome, by checking their DNA genotype .
Would it not be great to know what diseases your body might be at high risk of getting in the future? You can then at least prepare for it in advance and minimize the risks by taking preventative measures and not opting for the cure which as in my fathers case was an ordeal one wants to avoid.
The DNA / Gene test PREVNT provides is very comprehensive and will form part of your encyclopedia which is unique to you and only you . So please join us and become a PREVNT member, and spread the mindset change which will help humankind for generations to come.
Gut Issues
When my father had experienced all those gut issues I did some research which is all available online , and the more I dug into it the more I understood that we are all following a system that is wrong.
The biggest killer of gut microbiome (good bacteria) is antibiotics . So imagine this : we all have 2 kg of a rainforest in us which we carry along with us. Everyone’s rainforest is unique to them and diverse in different ways. This rainforest is so important to our bodies because it absorbs all the nutrients and works as a filter to get rid of the bad stuff in our bodies . Now imagine if your rainforest is being killed by antibiotics constantly what will happen ? it won’t take long for it to shrink or disappear . In my fathers case his rainforest had become so depleted that new weeds started to grow ( pathogens) , which basically were poisonous to him.
So the question raised here are as follows:
What good are any nutritional shakes if you do not have the “rainforest” to absorb it ? It will just filter straight out the body ! So why don’t the NHS nutritionists who treat cancer patients talk about increasing the diversity of everyone’s rainforest first , and then second once that has been accomplished talk about a nutritional plan.
So at PREVNT we have come up with a full comprehensive microbiome test which is unique to you and ill tell you what your rainforest is , and what it should be , which is so so important to try and beat any type of cancer or disease.
There is so much information online now that promotes gut microbiome and many studies have been carried out where certain good bacteria in people’s guts actually help focus chemotherapy treatments which cause less damage to persons body, All information is available online and we recommend you to look and read it up.
A good rainforest = good strong healthy system
Palliative care
If I had a choice knowing what I know now I would have only told the nurses to administer morphine to my father as it deals with the pain , but the drugs that were prescribed to him ( names ) I will not say here , but you can easily check with the palliative nurses , what the other two drugs do:
One of the drugs stops the body muscles from contracting / twitching etc , so your loved ones won’t even move; they will lie in the place where they are once this drug kicks in .
The Second drug they use stops all secretion in the body , so they can’t form spit, tears, sweat or wee. So imagine for a moment how that would feel if it was you ?
All this under the umbrella of a nice word for us humans of palliative care .
I would never have known if it wasn’t for that one super experienced palliative care nurse who took out 1 hour of her time to help my father in his last days , a BIG BIG thank you to her for educating us on what these drugs do!
Conclusion
The old adage through centuries summarizes all of this journey , ONLY you know your body better so why haven’t you got your MOT / encyclopedia of who you are ? Instead we know everything about everything, not nothing about ourselves .
Change your mindset today, become preventative, join PREVNT and spread the good word. Let’s become a collective.
If we know who we are better than we can better ourselves without the need to wait for a cure.
Thank you God Bless – spread the article and spread the word.