In May I had a meeting with my Oncologist who confirmed that I was cancer clear, however he had to wait until September for the “Official Date” Oncologist Meeting May 2022 .
The Oncologist meeting in May was actually a month early as I had plans to travel to see Cancer Warrior Terry in Lanzarote and to celebrate my 60th birthday in June. This meeting confirmed that following a CT-Scan there was not presence of Lymphoma. It’s what the call a “cold result”. By calendar dates it
was just short of 5 Years. But the oncologist felt it was “very unlikely” that any level of reoccurrences would happen. But for medical reasons I had to wait until September 2022 for formal diagnoses
Due to a medical conference my appointment was changed from 9th of Sept to the 13th of October. However I did meet the Oncologist during my second IVIg treatment. He had instructed further test prior to our next meeting. These inclosed Blood Test, CT-Scan’s, MRI’s , Heart Scan and Ultrasound’s. Over the weeks that followed all of these test were completed. I will go through these later
13th Of October 2022
The big day has arrived. My appointment was in the Oncologist private rooms in Cork, about an hour from where I live. After a physical examination, reports on all test he offically informed me that I am now Five years cancer clear and classed as Cancer Free, He intendeds to complete the entire report as this was classed as Cancer Trial’s. “We’ve been through alot Ian but I am overjoyed with finally declaring you cured”. As he said that I had a flashback to 14th of Feb 2014 when this same gentleman sat on my hospital bed and told me “You have a form of Cancer called Hodgkin’s Lymphoma” over 8 and ½ years ago. We were both smiling. It was the shortest meeting I have ever had with him but very emotional.
14th Of Feb 2014 – first diagnosed as Stage 4b Hodgkin’s Lymphoma Large B Cell aggressive /Liver & Lung with secondary to Right Eye and throat. Multiple lymph node sites . I was 51. It was Anita’s 44 birthday that day. I had instantly told the oncologist that I would “drag Hodgkin’s back to the hell it came from”. In total that took 8 years. In Dec 2014 I was declared Terminal with 6 to 8 weeks to live, my answer then was “Not going to happen”
After relapsing in 2017 I was given 3 months to live and again “Not going to happen” but this time I had put all my affairs in order (just in case).
And the Stem Cell Transplant in July 2017 where my third and last Terminal diagnosis occurred with 6 hours before slipping into unconsciousness and passing about 3 days later. That did not happen.
One of the biggest parts of treatment is the waiting game. Build up to treatment with test’s and scan can take weeks and sometimes months with different types of cancer. In blood cancer they have to look throughout your body to see how vast the spread of the cancer is to target these cells with treatment. The first line chemotherapy A.B.V.D lasted 6 months with me, but I had to wait nearly 2 months for the scans, it was classed as failed. I had to wait another 2 months with multiple test before the Targeted Radiotherapy commences for 4 weeks at 40 m/l gray to my neck. At the end of the therapy I was told by the Radiology Oncologist that the treatment had also failed and that I had 6 to 8 weeks to live. After that it was over 16 month’s of test’s, biopsies, scan’s, operations and meetings with a conclusion that I had relapsed, with 3 months to live. Another 3 month’s of I.C.E. Chemotherapy and stem cell harvest with a six week break followed by a week of B.E.A.M Chemotherapy and a full Stem Cell Transplant. I had to wait 100 days following that before a PET scan confirmed that the transplant was a complete success. And finally 5 years later to get to this diagnoses of Cancer Free.
Test to confirm Cancer Clear
My medical history prior to 2014 primarily centred around Kidney Stones- first diagnosed in 1992 and continues to be an issue. The initial pain from the first one was unbelievable but over the years I’d managed to cut off the pain, I average about 20 plus stones a month. Up to 2016 these effected only my left kidney but since then I get them in both. Once every 6 or 7 years one of them can get caught & require surgical intervention. However during various scans radiologists who are not familiar with my medical history, tend to raise alarm bells. Lucky for me my oncologist knows me well enough.
All were good with the exception of a higher white blood cell count ( the CT Scan confirmed a lung infection early stage pneumonia) But ESR was clear and normal
The ultrasound was used to check my kidneys, spleen, heart, gallbladder, liver, colon and kidneys. In 2016 it was noted that I had a Abdominal Aortic Aneurysm (AAA) most like caused by aggressive chemotherapy. It’s not at a dangerous level but needs to be monitored. So the AAA showed at 4.5. Spleen Colon Liver Gallbladder and heart all came back with no issues.
Kidney Stones also called renal calculi, (nephrolithiasis or urolithiasis aka nasty bastards )were present in both kidneys. One of the appeared trapped in my right Ureter, the Ureter is roughly 6 to 8mm in diameter- this stone was roughly 10mm. It did raise alarm bells but before the oncologist called me I had already passed it. So for the lymphoma the ultrasound was clear.
NTAP CT Scan
This was to check the neck-thorax-abdomen-pelvis and the kidneys. I had passed the sizeable stone in the right Ureter so all that showed up were stones in the actual kidneys. The neck showed the damage to the lymph nodes due to two biopsies and one of the lymph nodes to my mid spine which was due to a biopsy in 2017. It also showed the presence of an infection to my right lung which I’m on antibiotics for. But lymphoma clear.
First and most importantly the MRI was used to scan all areas from my neck to my torso, absolutely no sign of lymphoma. So no recurrent disease – in a nutshell this confirmed I was cancer clear.
In summary it was concluded as lymphoma clear, no sign of any form of cancer
These test are really the ultimate way of looking at the human body. At 60 you don’t expect to walk away from Stage 4 Cancer, especially Terminal Stage 4, without some issues. The levels of aggressive chemotherapy regimes, aggressive exposure to radiation from radiotherapy, multiple PET scans and a full Stem Cell Transplant have consequences. My immune system was destroyed and currently the medical team are attempting to rebuild it with IVIG. The nerves to my right neck were badly damaged during radiotherapy and impossible to self repair. The AAA is stable. Damage to my lower spine due to extreme levels of chemotherapy and age related degeneration. – but all manageable.
The absolute end result of an eight year war has resulted in my survival. That was where I commenced this battle from day one 14th of February 2014, a non stop drive to kill something that tried to kill me. I had dreamt about the day I could finally sit back and know without doubt that we had succeeded. My hope is that all of this will help other people kill cancer.
The use of battlefield language in awareness campaigns has been criticized by a lot of people. For me it is essentially the way to approach battling cancer. Journey’s or easy descriptions that sound better were not the answers I needed. I had to go to war against my own body and in particular my blood. Every means at my disposal was used, psychology, chemical, radiation and radical treatment. I won battles and lost battles. And without doubt I would not hesitate to do exactly the same thing again if necessary. To rage war against your own body is a personal choice, using battlefield terminology for me is the way forward because that is exactly what I had to do to survive. If we consider that:
Chemotherapy Drugs : are chemical so I have used chemical weapons,
Radiotherapy: is the use of radiation So I nuked them.
I am not against trying to soften the language used in beating cancer but my own body preference is to rage war. One of the first things I said to my oncologist as they prepared to commence ABVD was:
“Look at me as a weapon and your supplying the ammunition”
After over 8 years of fighting Lymphoma and the knowledge over the past five years that I was constantly showing clear scan’s, it feels strange to be able to sit back and know I have won this war. My oncologist will never discharge me, the form of Lymphoma Cancer was rare, just the initial attack to my right eye has only appeared once before in the long history of Lymphoma. When I relapsed in 2017 it was classed as Non Hodgkin’s Lymphoma. Again the Lymphoma was classed as extremely rare as it had changed from Hodgkin’s to Non Hodgkin’s. The procedures use to prepare me for a Stem Cell Transplant had only just commenced for Multiple Lymphoma. The hospital have created two files for me, every step of the procedures since 2014 have been documented with a substantial number of articles by the oncology team submitted as a documented clinical trial success. It will take weeks for this to properly sink in, it is finally over.
www.hlai.blog and www.hlai.ie
My awareness campaign will continue for as long as we keep the site’s funded. Going forward I have one more article about Mental Health in its final stage of writing. But where the vast majority of the past 8 years have been spent writing about my own battle with HLD & NHL I will cease writing about that.
Thank you all for reading and spreading Awareness about Lymphoma
May the road rise up to meet you.
May the wind be always at your back.
May the sun shine warm upon your face;
the rains fall soft upon your fields and until we meet again,
may God hold you in the palm of His hand.A traditional Irish blessing
That’s wonderful news – so happy for you and your family.