“We left the hospital and on the way out the door I looked at Anita and said you know what they just told us, she said yes. I clearly remember saying “well he is wrong”
That was the 15th December 2014; I had just been given six weeks to live.
I have promised time and time again to write up what happened between the times when I was recovering from ABVD and Radiotherapy all the way up to been first placed in remission in Feb 2016. But I have never really managed to complete this section of the blog. The difficulty is because there are months and months of waiting for results and meetings. For cancer victims the difficult part psychologically is the waiting and not knowing.
So this section of the blog covers really from December 2014 to March 2017 – 27 months. In Hodgkins Lymphoma treatment like ABVD is spread over 6 to 8 months, but when completed the patient will have to wait nearly 2 months to get the first deciding scan. If the scan is clear they may be placed in Remission (this is especially done with early stage Lymphoma, like Stage 1 and Stage 2, stage 3 are monitored for more time but with Stage 4 the test can be extensive)
- Diagnosed 14th Feb 2014 Hodgkins Lymphoma stage 4
- Biopsy to right neck Feb 2014
- Bone marrow & Lumbar punch March 2014
- P.E.T. Scan March 2014 (P.E.T. Number 1)
- Chemotherapy ABVD Commenced 13th March 2014 Ended 14th August 2014
- P.E.T. Scan April 2014 (P.E.T. Number 2)
- Declared Chemotherapy Steroid induced Diabetes Type 2 May 2014
- June 2014 Bleomycin (The B from ABVD) attacked my right lung
- P.E.T. Scan Oct 2014 (P.E.T. Number 3)
- Radiotherapy @ 40gml Grey to right side neck Nov 2014 to Dec 2014
- Given 6 weeks to live following Radiotherapy Dec 2014
- Ultrasound Fine needle aspiration March 2015
- P.E.T. Scan May 2015 (P.E.T. Number 4)
- Tonsillectomy & Biopsies to throat July 2015
- P.E.T. Scan Oct 2015 (P.E.T. Number 5)
- Oct 2015 Partial Remission (Cancer cells present but not active)
- Diabetes Type 2 Cleared
- Full Remission Feb 2016
- P.E.T. Scan May 2016 (P.E.T. Number 6)
- Biopsies to throat & base of tongue July 2016
- P.E.T. Scan Oct 2016 (P.E.T. Number 7)
- Suspected Kidney failure Nov 2017 & new Lymphoma site to middle spine
- Biopsy to lower spine Lymph Nodes Feb 2017
- P.E.T. Scan March 2017 (P.E.T. Number 8)
- Declared relapse both HLD & NHL urgent rescue procedures required
- ICE Chemotherapy April to May 2017
- P.E.T. Scan May 2017 (P.E.T. Number 9)
- Stem Cell Harvest June 2017
- BEAM Chemotherapy July 2017
- Stem Cell Transplant July 2017
- P.E.T. Scan Oct 2017 (P.E.T. Number 10) First Clear scan
- Partial remission Nov 2017 (No cancer cells but recovery)
- Multiple test and scans including bone density Jan 2018 to March 2018
- Full Remission March 2018
Most of this is covered throughout the blog but this part of the blog will cover between December 2014 to March 2017. I will only go into some details about this and I will be using months not dates. To be clear before I commence, Lymphoma is a blood cancer and can be difficult to trace & track, it can live inside the bone marrow and be undetected. So some of the test for victims after chemo can be long and drawn out. Very rarely scientist can miss lymphoma – this is not them been negligent as we are talking about micro biology and I did say rarely. So oncologists go to great lengths to ensure that before placing a victim into remission they have checked everything.
So this blog continues from: www.hlai.blog/2014/11/17/radiotherapy/
December 2014. So Radiotherapy is over and done with, the radiotherapy oncologist had told me to enjoy my Christmas dinner and be prepared for admission to hospital pre January 2015. So I went back to work the next day as December is a really busy time in the transport industry and the effects of the radiotherapy really started. My neck was bright red, I was tired within a few hours of getting up. We only close Christmas day and Stephens Day so the time in between would normally be split between staff. You would think that the staff that I employed would do extra cover to give us a break especially with the diagnoses but no. I actually ended up covering two extra days. Its one of the things that cancer patient’s face and that is self cantered individuals. Anyway I did not end up in hospital for the New Year and I actually started to improve, I regained strength and kept pushing to improve my quality of life. After all I still had my business to keep me going.
Ultrasound Fine needle aspiration March 2015
In reality I was still radioactive all the way through Jan and Feb 2015. It would have been impossible to do a PET scan as the radiation from radiotherapy would have overpowered the levels used in the PET. So I met the Oncologist in Feb 2015 (A year after first diagnosis) and he decided to organise an Ultrasound Fine needle aspiration in March 2015.
Now an Ultrasound Fine needle aspiration is a strange and specialised procedure, the oncologist referred me to a different hospital to have it done. The procedure was done in a breast cancer screening unit, and yes the biopsy was from my neck.. The procedure much to my surprise was preformed by one of the top breast cancer specialist in Ireland, the reason been it is so precise. Basically there is no anesthetic – they use liquid ice to freeze the area. They take x-rays to help locate the lymph nodes. Once located the surgeon with one hand will operate an ultrasound wand and with the other will push a long thin needle into the area, you can’t move during this and you are 100% awake. The needle is then guided by the ultrasound to the lymph node (Lymph nodes are the size of a pea but mine were swollen to about 50%) They then take a sample from inside the node. Now these samples are actually cells and from these cells they can tell if there is cancer present. The room next to the procedure room is a lab, that is how quick they need to examine them. So they extract the cells and basically go into the adjoining room and look at the cells under a high density computerised microscope. The first results were instant and showed cancer cells active, so they did a second then a third and then a final extraction. All four had shown the presence of cancer cells. Why am I going into so much detail here? Well because this was first of all a very different procedure for lymphoma, in 2015 it was not part of the regime and the oncologist wanted to see how it would work on a HDL person. Secondly it was the first time that I went negative, I walked out of the procedure and looked Anita straight in the face and said “I’m Fucked, I have a few weeks to live” Now from the procedure room to the car is about a five minute walk – we never said a word to each other. And just like that I turned around and said “there is no way this is going to beat me I am going to kick the shite out of this for once and for all” That was it, a few minutes of negativity in twelve months and I was back up and fighting.
P.E.T. Scan May 2015 (P.E.T. Number 4)
I gave a detailed breakdown of PET scans in the past blogs. These are without doubt the only road maps for Lymphoma. This was towards the end of May and the results had to be sent to different centers of excellence worldwide. The results showed that there were Cancer cells present but appeared to be isolated to my neck and throat, with possible activity in my right tonsil. This was confirmed and I got called into see the Oncologist in June 2015. When I was told this I kinda started laughing which the Oncologist didn’t like. I explained that I had them removed when I was quite young, so the Oncologist started laughing. He explained that they grow back. I really didn’t know that, so I felt like a gobshite. Anyway he set up an appoint with an E.N.T specialist (Ears Nose and Throat) who examined me two days later and set up an appointment to enter hospital for a throat biopsy and Tonsillectomy. He took close to 20 samples and a complete Tonsillectomy. When I awoke my throat felt like it was on fire, but I was released from hospital the following day.
Tonsillectomy & Biopsies to throat July 2015
The E.N.T surgeon completed the operation in late July 201
Samples were sent for testing in Dublin, London, Paris and US. The results came back as “inconclusive” three weeks later.
Inconclusive really means that basically the four centres could not conclude the findings. I could not get further information about this but in Lymphoma a patients regimes are agreed by a panel of Lymphoma Oncologists – they could not agree on how serious the results were. So by late September 2015 the decision to do another PET scan was agreed.
P.E.T. Scan Oct 2015 (P.E.T. Number 5)
PET Scans are dangerous to a persons life. They equate to about 50 x rays so the exposure to radiation is high. The maximum recommended number of scans over 12 months is 2. This scan was number 5 is less than 20 months but it was considered the only way forward. The results came in and I got called into meet the Oncologist.
The oncologist was in great form, he explained that he was just off a conference call with two professors and that the Lymphoma Panel had fully agreed to place me into Partial remission, Partial remission means that there are cancer cells present but not active. Over the previous six months they had carefully examined the PET scans and biopsies and concluded that even with cancer cells being present they were not active. They also concluded that there was no treatment available, that there was no form of Chemotherapy needed and they could not expose me to radiotherapy again. So I was placed in Partial remission with an appointment set for Feb 2016 with a CT Scan and blood test.
Diabetes Type 2 Cleared Oct 2015
Little backtrack. With all the steroids used in ABVD I got Type 2 Diabetes and had originally required insulin injections which following ABVD was switched to Metformin 2 x 500mg twice a day. I had a routine diabetic blood test in September 2015 and the doctor called me to advice that I was to reduce the metformin to 500mg twice a day for 3 days then one 500 a day for 3 days and that was it I had officially beaten Type 2 Diabetics
Full Remission Feb 2016
On the first week of Feb 2016 I went in and had the CT Scan followed the next day by blood tests. On the 12th of Feb 2016 I met with the oncologist. Two years since diagnosed, fourteen months since I was declared terminal and there I was waiting to find out what was next. I was surprised when the Oncologist told me that I was now formally in full remission. He explained that he would see me four times a year for the following five years and if all went well I would be declared cancer free. I have to be honest and say I was in shock. Anita was actually with me at this meeting and I just looked at her and smiled. I had beaten Stage 4 Hodgkins Lymphoma
Next appointment was set up for 3 months later. May 2016
Now most of this blog I have refrained from mentioning my Mum. My mother was born in January 1932 – in 2016 she was 84. January 2016 was not a good month for her, she had caught a bad flu and following that she had taken a severe fall. The fall was “unexplained” and the hospital in Dublin classed it as a blackout. In Feb she was absolute delighted with my news. But she had a second fall, this time it caused extensive bruising to her head and face. I am quite good with electronics and had installed both an alarm system and CCTV to the house. The CCTV was external only and allowed her to check the to see if or who was at the door. I got her approval to place in 3 extra cameras inside the house, one on the landing, one in the hall and the other in the kitchen. In April 2016 she suffered another fall, this one was caught on camera. This was a bad fall, it happened at 3am. We had panic buttons but it took her 3 hours to press the button. She hit her head so bad that she had no idea what was happening. I was first call by the response monitoring company and I had full online access to the cameras. I went online and saw my mum sitting on the kitchen floor unable to move. We called the ambulance service and guided them into the house (we had drop keys in place and great neighbours) I live 170 mile from my Mum’s home so basically once she was in the care of the hospital I headed to Dublin. That was April 2016 , in May she was declared as having mid stage Vascular Dementia and placed into 24/7 care, by August she was in a specialised home she never left hospital again and passed away peacefully on the 9th of April 2018 – She never knew what happened to me medically from May 2016 as we decided that what lay ahead would be too difficult for her to handle. Its my Mum’s side of the family that I get my fight genes from.
Many believe we have been given signs that our relatives & loved ones are still around and, in the spiritual community, Robins are viewed as symbols of visits from the dead. I have an absolute belief in this and throughout the time following my Mum’s passing I have been greeted, tweaked at, followed and watched by Robin’s. They are a stunning bird and need to be protected.
P.E.T. Scan May 2016 (P.E.T. Number 6)
As I pointed out the maximum number of scans like this per year is two. 27 months and here is PET Number 6. And more waiting. As I am quite close to my oncologist he decided to call me. My Throat showed up as an alert area again, this time at the base of the tongue.
In reality PET scans are a great roadmap for blood cancers however they are not always what they seem. Yes with active Stage 3 or Stage 4 Lymphoma where the cancer is attacking multiple locations in the body they are fantastic. But as the stages drop to Stage 1 or 2 they are less accurate and some positive reads may be misinterpreted. PET scans light up areas in the body as been cold or hot. Cold areas are clear and Hot areas are cause for concern or further investigation. With Stage 4 Lymphoma my body lit up Hot like a Christmas tree, but my last PET was only Hot about my throat and neck. I had my tonsils removed so that eliminated that. But here we are again with my throat, the base of the tongue is classed as within this throat area so it was not a new site. My Oncologist felt this alert was not a sign of relapse but more a glitch but he wanted to be 100% sure so he sent me off to the ENT surgeon. The ENT surgeon met me and examined the back of my throat. I don’t particularly like this exam – its where they place a tiny lead called an endoscope up one side of your nose and push it all the way to the back of the throat, takes seconds to get in place and you don’t feel much its just a little uncomfortable (An endoscope is an illuminated optical, typically slender and tubular instrument used to look deep into the body and used in procedures called an endoscopy) He had a look and in front of me he called the Oncologist. He explained that he was not overly concerned but there was a small swelling at the base of my tongue. They decided to investigate further and organised an appointment for admission for yet another biopsy.
Biopsies to throat & base of tongue July 2016
A year since I was last admitted and here I am again in the ENT ward on my way for biopsies to the throat and base of tongue. Some warnings were given that this procedure included biopsies from the area directly within the voice box, I may have speech issues either temporary or long term. And if the surgeon did find a cancerous tumour then he could remove it. I agreed and off we went. I set a new personal record from recovering from a full anesthetic (general anesthesia is a medically induced coma with loss of protective reflexes,
resulting from the administration of one or more general anaesthetic agents) from being removed from the operating table to being placed in recovery it took 7 minutes to come around – much to the surprise of the nursing team. I sat up looked at the clock and tried to get out of bed, the nurses ran at me to keep me still. My voice was okay (I think) – one of the nurses said “where do you think your going” my answer was “I’m late for a meeting in work and have to go” very delusional.
Anyway the ENT surgeon came to see my a little later and said all went well, he had removed eight samples from my tongue and ten samples from my throat. He said there was no immediate cause for concern. Next day I went to that work meeting that I was late for the day before and secured the business.
August 2016 I meet the oncologist but he was not happy. The test had proven to be inconclusive and they wanted another PET scan. But I was too close to my last one in May and as I was now way above the maximum threshold for these scans I had to wait till Oct.
P.E.T. Scan Oct 2016 (P.E.T. Number 7)
As this was PET scan number 7 in way under 3 years it needed approval from two sitting professors. Which we got and off I went for PET number 7. Strange how I now know most of the staff in this unit. New record set for 2016 – they had never scanned anyone this many times in such a short length of time.
Kidney stones (renal lithiasis, nephrolithiasis) are hard deposits made of minerals and salts that form inside your kidneys. Kidney stones have many causes and can affect any part of your urinary tract — from your kidneys to your bladder.
Bet your wondering what is he talking about Kidney Stones for. In 1993 I was rushed to hospital. I had extreme pains to my abdomen and left side. I was in excellent physical condition in 1993, 31 and very healthy. I was self employed as a Logistic and business management strategy consultant with Apple and Horizon in Cork. But the pain from my side was unreal I actually thought I had ruptured something during training. I was taken into the hospital and given morphine to ease back the pain, I was then x-rayed and they found this tiny stone that had got trapped between the kidney and bladder (I passed it that afternoon in hospital) This was about the size of seed but with crystal sharp edges. But something this small had caused the most severe level of pain I had ever experienced. I was allowed out of hospital that day but it turned out that the stones were reoccurring. I actually get about 20 a month every month since back in 1993. My Urologist is in the same hospital that my Oncologist is in which as you will soon read is really important.
To me kidney stones are nothing of concern. If a stone is produced that’s too big to physically pass I get in contact with my Urologist and he will remove it surgically. Minor operation to do this and it has only been necessary five times in 20 years. There is no cure. They really don’t bother me as I have grown used to them.
Suspected Kidney failure Nov 2017
Now it gets complicated. I get an urgent call from my oncologist to get in and see him that day, so I went straight from work over to his office. The results of the PET came back and this comes in a few waves. First and most import it was all bad. It appeared that there were multiple stones in BOTH kidneys, in particular my left kidney. One or more of these stones was blocking the left kidney. They estimated a cluster of about 30 plus in the left and 14 in the right. I have never had stones in the right kidney. Many years before this my Urologist had warned that at some point the damage caused by stones in my left kidney could result in the loss of that kidney. The blockage had caused havoc on the PET scan and basically the scan could not be read to the entire left of my body. So the Oncologist rang my Urologist (Their offices are directly across the road from each other) and the Urologist said that he would call me directly. So off we went home, on route the Urologist rang me, it was a Thursday at 6:30pm and I knew instantly this was bad. He had me booked in for a CT Scan on Friday and I had an appointment to see him on the Monday. Over the weekend I had drank about 20 ltrs of water (a great way to clear kidneys) and I knew I had passed a considerable number of stones. I arrived at the appointment and the Urologist (I know him over 20 years and its on first name basis) broke bad news, he felt that the left kidney had ceased working and that it was completely blocked. He pointed out that this needed surgical intervention but with the history of Lymphoma he was really concerned. I told him that I had passed a large number of stones and blood over the weekend. He done a physical examination but was still quite concerned. He rang into the admissions in the hospital and they told him that unless critical the earliest free bed and operating opening was Wednesday. So he booked me in. But he looked at me and said “Ian I’ve known you for years and I trust your judgement, do you feel you have unblocked that left kidney” my answer was truthfully Yes. He then lifted the phone and called the Radiology department and booked a CT Scan for Wednesday morning. He explained that the last thing he wanted to do was remove my left kidney but it looked likely and I was to understand that the appointment for admission was to have my left kidney removed. However he wanted a second look at the kidney through a CT Scan on the Wed morning, backed with a meeting to see him at noon that day which was roughly the admission time. I arrived at the hospital with my overnight bag packed (for a week) went to the CT unit had my scan and went off for a coffee before meeting the Urologist. This gentleman is not classed as a Doctor but a Mr – he is one of the best in Ireland. He called me into his office and had test results spread all over his desk. His words “I have no idea how you have done this Ian but you have managed to clear all the stones from your left kidney and what remains in your right kidney is just grit” he looked at my face and I have to say I was speechless – he lifted the phone and cancelled the admission and called the Oncologist. They spoke in high medical terms for a few minutes and he hung up. He then looked straight into my eyes and said “I have the pleasure to tell you that you are still in remission and I have no reason to proceed, congratulations Ian I am absolutely delighted for you”
How good is that… but it didn’t last long
Nov 2017 new Lymphoma site to middle spine
Routine double checking of scans is now common place in the world. As a Stage 4b Lymphoma victim the scans are studied at different universities throughout the world. These checks are conducted by students and interns who form reports etc. As my diagnosis was Stage 4b HLD (Stage 4 being where the cancer had spread from the Lymph node system to vital organs, my case Liver and right Lung, with non vital organs been Throat Neck and right eye) the level of interest from students is very high. Now I will never know who it was or even where in the world this person is but a student spotted something on the PETs and CT Scan that had been missed. This person had taken time to compare my early PET scans to my last one and noted a new site in the middle of my back just behind my spine. Keep in mind that these sites are the size of a pea but they spotted it. The site had never appeared on any test prior to Oct 2016.
My Oncologist called me in to tell me. I was disappointed. He basically placed me back into partial remission pending further investigations. But if this site proved to be new and active then he would be placing me into relapse. The medical council refused any talk about another PET scan for months if ever – so they decided to do multiple CT Scans throughout Nov and Dec 2016. All were inconclusive and the size of the Nodes never changed. And I went through that Christmas not knowing what was happening. I was also battling to try and keep my business but a back stabbing two faced evil bastard that I had unfortunately trusted for over 20 years took my business. I went into January 2017 assisting a liquidator clear up the mess that they made. I lost everything. We live in a rented house and managed to keep hold of that, I was back on the market and instantly approached by a company to do IT consulting work which I accepted. They knew my medical background but wanted and need help. So I went straight into a 6 week consulting role which really was like restarting my career
The hospital contacted me in late January 2017 and said that they had finally got approval for PET scan number 8 for March 2017 but I also had appointment prior to the Scan for a biopsy to my back
Biopsy to lower spine Lymph Nodes Feb 2017
The hospital called and the date was set for the biopsy. This type of biopsy is nothing like what I had prior. You’re awake for it. It has to be done by a specialist with an Oncologist present. The entry area is within mm of the spin and the least mistake or simple error could result in paralysis. I will not go into details but its not a nice procedure. It is preformed in a radiology unit, basically the CT Scanner is used to guide needles into the lymphoma site it is quiet grueling. They managed to get 12 samples. And off they went for analysis and off I went home.
P.E.T. Scan March 2017 (P.E.T. Number 8)
Definitely setting unbreakable records this time with Scans. Had the scan but I was unable to get the results prior to the biopsy as there were a large number of Lymphoma specialist worldwide now involved. However I was told that the area to my back had shown up on the scan. I also had a CT N Tap (Another form of CT Scan)
Diagnoses March 2017: Relapse
I was first diagnosed in Feb 2014 this was now 3 years later. My Oncologist called me in and broke the news. The PET and biopsy had showed extremely active cancer cells, more likely Non Hodgkins Lymphoma. I was placed in relapse requiring emergency rescue intervention. The diagnosis was so severe that the Oncologist said that we did not have enough time to look for a donor, the chances with or without treatment of surviving till my next birthday was less than 5%, my next birthday was the 12th of June, this was the 30th of March – 10 weeks. To become a self donor (autologuou) for a stem cell transplant you have to undergo high levels of chemotherapy called ICE. And so the story continues with my blog.
And from here I commenced the Relapse Blog Story
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