Cancer Warrior: Terry’s Sarcoma War 2022

This is a substantial page and to help guide the reader I have set up a “jump to section” menu

Click here for Introduction

Click here for April, May 2022

Click here for June 2022

Click here for July & August 2022

Click here for September 2022 (Part1)

Click here for September 2022 (Part 2)

Click here for October 2022

Click here for November 2022

Click where for Terry’s Birthday 28th November 2022

Click here for December 2022

Click here for Updated 27th December 2022

Click here for Port Aventuna World Barcelona 28th December 2022

Click here for The Impossible Dream

Click here to go to the Closing Comments

Introduction

Terry’s Sarcoma War 2022

I have known Terry since about 2000. We first met in Lanzarote where I co-owned a bar called Nancy Spain’s
In September 2001 I formally interviewed Terry for a managers position in the bar. It’s easy to remember the exact date because during the interview the second plane crashed into the World Trade Centre in New York 9/11. We watched with horror as the scenes developed and our heads were bowed low. Our hearts sank as we both knew that life as we had known would be forever changed.

I’ve always classed Terry as a trustworthy friend. Time drifted us apart as I had to return to Ireland. But over the years we kept in contact.
Throughout my diagnosis Terry helped me by supporting as much as possible. During my first remission we visited Terry to meet his new born son Tyler.And his beautiful wife Sara. That was the 12 of June 2016.
We’ve laughed we’ve cried we both shared grief and joy.

We never needed to talk every day or month or even year. But we have both known that if we needed each other then the world became a very small place

March 2022

28th March 2022 I was painting the ceiling of the house I just purchased in Kerry and my mobile rang. It was via Messenger and the caller ID was Terry. I had gloves on and couldn’t answer. So a few moments later I called back.
I have to be honest and no idea why but I felt something bad was happening. Terry resides in Lanzarote. The call started “Hi Terry is everything okay mate?” The answer was “No I have bad news Ian” and Terry commenced detailing that he had a rare form of Sarcoma, diagnosed as inoperable Stage 4 MPNST Sarcoma. He had all the information compiled including blood test, radiology reports and oncology reports. Diagnosis was life ending within 3 months.
Like a switch I commenced working with my friend to battle this cancer. But I needed time to understand this cancer as I’d personally never heard of it. With the exception of Anita I’ve not had to work with a cancer victim that I was close with. But friendship aside we commenced the positive mental assault against cancer. Over the following 48 hours I shared experiences with Terry. He had a defined PMA, positive mental attitude. And the battle began.
That was 28th March. The prognosis was actually a week before hand.
I had an appointment with my oncologist the following week but had a no fly restriction slapped on me. Which remained in place till nearly the end of May. But once released I booked the flight.

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April, May & June 2022

The Red Devil

Not quite the Red Devil I wanted to talk about, unfortunately.

Doxorubicin (Adriamycin) is an aggressive type of Chemotherapy and it is used for multiple types of cancer such as blood cancers, Lymphoma, Leukemia, various solid cancers such Sarcoma, Breast Cancer,  Ovarian cancer. It works by inhibiting an enzyme known as “topoisomerase 2” and blocking RNA and DNA synthesis, which leads to cancer cell death.

Apart from the Chemotherapy drug having a bright red color and causes your urine or other body fluids to turn a reddish color for 1 to 2 days after a dose is given which is how it got its nickname.

Adriamycin has been withdrawn from the market but Doxorubicin has now fully replaced it. Most medical professionals still refer to the drug as Doxorubicin (Adriamycin).

Apart from general possible side effects the prime concern using  Doxorubicin is that this particular drug can cause serious heart damage and heart failure. Each Therapy is called a “cycle” and each cycle is administered by IV over about 30 minutes in a cancer care wing of a hospital. Oncologist keep a very close eye on heart rates throughout the entire course of chemo treatment.

Common side effects of doxorubicin may include:

• nausea and vomiting, which can be severe
• total hair loss (alopecia)
• diarrhea
• swollen mouth and mouth sores
• loss of appetite (anorexia)
• shortness of breath
• fatigue, extreme tiredness
• low platelets (thrombocytopenia)

During my own first line treatment in 2014 this drug was part of the treatment A.B.V.D. The “A” Doxorubicin hydrochloride (Adriamycin) – so I have had experience of this particular nasty drug.

Terry however on the first cycle asked the nurse “Is that it ?” followed by give me more of that please. Great approach and great attitude.

Focused on one thing alone and that was to kill this Cancer.

Apart from hair loss and fatigue Terry had very few side effects. His temperament was iffy before chemotherapy and for those who know Mr Green, his normal temperament is roughly 1amp, so best guess it was now at 1/2amp   

I have seen Terry working with another friend of ours who’s husband committed suicide in April of this year. This man is empowering, empathetic and a genuinely caring person. I’m honoured and privileged to have such a man as a friend

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June 2022

The photo below was taken on the 15th June, 3 months since terminally diagnosed and just look at this warrior

This man is inspirational. I’m not going to detail what Terry has gone through in the past 3 months but it includes a very aggressive form of Chemotherapy . He has shocked his medical team with his approach and positivity. Yet again cancer has picked the wrong person to fight, it’s early days in Terrys war but he has already started to beat the odds. But not only is he raging war against Sarcoma but he is supporting other victims.

Blankets of Hope (Cork Cancer Care Centre) very kindly presented this beautiful blanket to Terry. These blankets are hand knitted by volunteers to the Center. They are a fantastic organisation. The blankets are a symbol of hope and strength. Thank you Linda and team, as always a great support for victims.

Scan results 23 June 2022

Good things happen to good people and Terry is a great person

Scan results after 4 cycles of Chemotherapy and they are incredible. Terry has done the impossible yet again. The scan not only shows that the tumours are reactive to chemotherapy but there are no new sites, smaller tumours have been destroyed, the 3 lymph nodes have been reduced AND the large inoperable tumour to the rear of his lung has reduced from 7.2cm to just under 5cm.

It gets better. The oncology team are continuing with the current chemotherapy for 2 more cycles with a view to another scan in 6 weeks. They consider that the tumour site behind the lung could be removed. They may extend chemotherapy by 4 to 6 cycles after the scan.

3 1/2 months ago he was told he had 3 months. Now they are looking at a man that has proved them wrong. They are talking more about continued treatment. Here is a man that has already created his Impossible Dream.

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July & August 2022

Cycles of this chemotherapy are every 21 to 24 days.

I seriously hope I get all the dates right here but Terry will be sent a pre release copy of the article for approval. I avoid placing the names of the medical teams personnel on these articles including this one.

Terry was diagnosed with Terminal Stage 4 MPNST Sarcoma. This is a rapidly spreading tumour based cancer. The largest Tumour was sited below Terry’s right shoulder, close to his lung, it was inches away from his spine. Clusters were also shown in mid sections including lymph nodes. It was also noted that new sites were forming through Terry’s body.

Scan results after 4 cycles of Chemotherapy showed that the tumours are reactive to chemotherapy but there were no new sites, smaller tumours have been destroyed, the 3 lymph nodes have been reduced AND the large inoperable tumour to the rear of his lung has reduced from 7.6cm to just under 5cm. An incredible result. A further 3 cycles of chemotherapy over July and August was administered. At which point the medical team decided to do another scan…

September 2022 (Part 1)

Terry’s blood analysis had prompted the scan, The oncologist was concerned about possible heart damage due the high levels of Adriamycin. They also stopped the chemo. We were concerned about the sudden U-Turn, and our concerns were right.

1st of September

One of my favourite months, for many years I’d travel to Lanzarote for 2 weeks holidays to get ready for the winter months ahead. But this year September didn’t start as hoped. Terry had gone to get his 8th cycle of Chemotherapy and had expected a CT Scan with blood works. He arrived into hospital but they started with an ECG, monitoring the heart while in this aggressive level of chemotherapy it is vital as it can damage the heart. The blood test are performed to ensure that the patient has no underlying infections. The oncologist decided not to do the scan or the chemotherapy as some of the blood results were off.

So Terry went home. Just after 5pm he called me for a chat. He was concerned about not getting the scan or chemo. But we discussed it fully and to be fair he was in better form before finishing the call. About 20 minutes later Terry called again – the next 45 minutes of my life I will never forget..

We live in Killarney- 2,560klm from where Terry lives in Lanzarote.. The call start with “ Ian I’m in trouble” Terry was home with his six year old son, his wife had taken their dog for a walk but left her mobile at home. Terry had been able to hit redial. He was going into what I would describe as septic shock. This is an extremely dangerous condition. The power of some sort of infection had gone straight at his central nervous system. I asked Anita to call Sara but it went to voicemail. I did not want to end the call so I could ring Andy (Terrys brother who live 25 minutes from his house) so I kept talk to Terry, trying to help control his breathing, trying to keep him from passing out, trying everything but helpless due to the massive distance between us. Sara got home and took Terrys phone – my first words to her were “Sara Terry is in septic shock, please call an ambulance urgently” Sara gave the phone back to Terry grabbed her own phone and called Andy – Andy is fluent in Spanish and he immediately call 911, at the same time he ran to his car to get to Terry. Andy called me later that evening to say that Terry was kept in, but stable and awaiting test.

Following the call we got a lot of numbers onto Anita’s phone to ensure a situation like this never happens again. Andy also went to sort a panic button for Terry.

He was kept in hospital for 8 days. Blood test showed two infections, one from the kidney (UTI) which had caused a dangerous blood infection. On the 7th of September Terry got his long awaited CT Scan.

Wednesday 21st of September Lanzarote

After waiting over 2 weeks for the scan results Terry met his Oncologist. The report from the radiologist had not been finalised but the oncologist got a verbal report.

Please keep in mind that Terry is from Kent in the UK, but has lived in Spain for the past 23 years. He has a good understanding of Spanish but his brother Andy is fluent. Andy also lives in Lanzarote about 25 minutes from Terrys house. But at medical levels even fluent speakers can struggle. “If you don’t understand or have any doubts about something always ask the oncologist to explain or repeat” it’s what I do and both Terry and Andy started doing months ago.

Terry’s oncology team are Spanish with a good level of English, they speaks to Terry in English but if they get stuck on a word they switch to Spanish. This can result in certain things been lost in translation. It happens.

The oncologist began to explain the report from the radiologist. The main tumour that had initially been measured at 7.8cm and in the last scan to under 5cm had regrown to 7.2cm. This news shocked Terry and Andy but they asked about the other sites and the oncologist switched and said in Spanish There was were told there was no notable change, Andy was iffy about how that translated and asked the oncologist ‘Does that mean the other sites are unchanged” and the answer was “yes”. Terry’s bloods were also in trouble.

You have to be in this type of situation to fully understand the mental impact of this type of news. Our brains react to what we believe is significant and starts to immediately analyse danger. Another similarity we have, we think alike. The therapy had stopped working and failed to contain the growth. The only good part was that no new sites were seen.

Terry asked “what now”. The oncologist said she had commenced an application for clinical trials in Madrid. It turns out that there is a research centre in Madrid specialising in Sarcoma. Trials specifically for MPNST Sarcoma were active. The oncologist would commence application to see if Terry could be a candidate. She went on to mention a number of other treatment centres. Terry was however analysing and focused on the information that his oncologist had said “the tumour had grown and other sites we’re still there” he felt a dark cloud descending over him

Before I go into what really happened next, which is incredible, I’d like to talk a little more about Andy. I first met Andy before Terry and myself met. Andy was a guitarist & vocalist in a band that played in Charlie’s Bar, this bar was across from Nancy Spain’s (the bar I owned). It was late 1999, I’d only lived in Lanzarote for about 3 months at that stage. It was Andy that introduced me to his brother Terry. After leaving Lanzarote in 2004 I’d not spoken with Andy until this year. We knew each other but not very well. Andy is Terry’s rock, he has been by his side every second possible. It shines a light on “brotherly love” that I have never witnessed before. From first diagnosis Andy had researched everything about Sarcoma. Anytime someone in the medical profession mentioned a form of therapy Andy researched it. His knowledge about cancer has grown to a level beyond what might some people could ever understand, he is also a good listener. We’ve had multiple discussions and through Andy my own knowledge of cancer has also grown. In reality Andy has saved Terry’s life more than once. And here is the perfect example of someone’s devotion to his brother becomes a reality….

They left the hospital in a state of shock. For the first time since diagnosis Terry was worried “the tumour has grown” a dark hand was reaching out. Andy was also in deep thoughts but he was creating a plan. A plan that was close to impossible. But impossible is a place where we hunt The Impossible Dream.

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September (Part 2)

Terry called me with the update from the oncologist but handed his phone to Andy , as we regularly discussed options. After the call I commenced research the centre in Madrid and found links to Tenerife. Links that connected two research oncologist to documented trials. Unknown to me Andy was doing the same thing but more focused on the lead research Oncologist in Madrid. He found the guy’s number and without hesitation picked up the phone and called his office…… and right there Andy started a game changer. He got an appointment for Terry and himself to meet one of Europe’s top Sarcoma research oncologist for the following Monday !!! I’m still trying to get my head around this, but he then booked flights to Madrid for both of them, less than a hour after getting what appeared to be devastating news Andy had upped the game.

Thursday 22nd of September

Terry & Andy had to get updated copies of reports, scans, blood analysis & medications for the meeting on Monday. They arrived into the hospital and headed into the oncology ward. After explaining what they required & why these items were needed urgently they were asked to take a seat. As they we’re waiting Terry spotted his lead oncologist leaving her office. About 10 minutes later she returned and signalled for Terry & Andy to come into her office, she had a look on her face to told Terry she was in bad humour.

She had been told by the receptionist what they required and had headed to radiology herself to get the report that was still not prepared. Andy explained that an appointment was arranged to meet the senior oncologist in Madrid through a private consultation on Monday. And this is where everything started to get confusing. Andy pointed out that they need the radiologist report to show that the main tumour had grown and other sites were stable. “Who told you the other sites were stable?” “You did“ – “the other sites are gone the only site remaining in the tumour to Terry’s back”. Both lads were surprised but concerned that they were told the opposite yesterday- they quizzed the answer “I did not say that, I said they were not noted. We do not have the full report yet due to staff shortages. Our head radiologist is in today and will have the written report tomorrow morning” Both Terry & Andy decided not to confront her about the clarity. The left the hospital a lot happier but concerned about the other sites. But the next day changed everything……………………………………….. just wait until you read this

Friday 23rd Of September

Terry and Andy returned to the hospital Friday morning to collect the updated reports. They were all at the reception desk. They took all the paperwork and returned to their car. As they were flicking through the various documents Andy’s mobile rang. He answered it and the person on the other end was actually the senior radiologist – looking to see if they could come in. Andy said yes were in the hospital car park. Five minutes later they were in radiology sitting with the doctor. He explained that he was away up to yesterday and wanted time to go through the scan in greater detail.

All but the main tumour were gone.. the chemotherapy was successful in killing every cancer cell with the exception of the large growth. It gets better.. After careful examination of the main tumour the radiologist reported that the scan showed a mass of 7.4cm, however the core of the mass approximately 5cm appeared to be dead. This was the main growth section, however the outer rim of the tumour was active and appeared to be newly forming. This seriously changed everything about the battle. The chemotherapy could not reach the outer rim. Uninterrupted the radiologist continued in a very clear manner – he had consulted with Terry’s oncologist and the senior oncologist in Tenerife (I’ll explain this later) and the team had reached a decision to do multiple biopsies of the inner dead mass and the outer rim. His conclusion was that the probability of surgically removing the tumour was now approachable but only pending biopsy results and confirmation from Madrid. He organised an appointment for Tuesday 27th

In my experience and knowledge of both Terry and Andy it is close to impossible to shut them up, but in less than 10 minutes they were gobsmacked – they left the hospital got as far as the car looked straight at each other and went “Fuck”

This war had started to turn back to Terry winning. In less than 48 hours every part of the battle had gone from bad to incredible. And this was before meeting the Lead Oncologist in Madrid.

What a rollercoaster and it gets better .

Monday 26^th of September Madrid

I was in hospital in Cork for my second IVIG treatment as the two lads were on a flight to Madrid . Their appointment was at 4:30pm at the Hospital Universitario Fundación Jiménez Díaz . Like most hospitals this one caters for both public and private patients. The appointment that Andy had secured was a private one. Cancer trials in Spain are generally all public but this particular oncologist could sign off on commencing Terry in trials.

The oncologist is the founder The Research Group ATBsarc specializing in advanced Sarcoma, MPTSD included. You don’t get many higher up the ladder than this man. Terry needed to be recognized as a good candidate for the trials. And all evidence point to him been both mentally and physically strong enough. After a brief introduction and examination of paperwork the Oncologist confirmed that he felt Terry would be an ideal patient.

Medical science is one of the biggest industries in the World. Billion’s are made from scientic research. The Spanish government have invested massive resources into trials and are breaking new ground every day.

To explain a little better if you look at this business model and compare it to a job application. A potential candidate submits a CV and if successfully will secure an interview. If the business accepts the candidate then they have to encourage the candidate to join the business. It’s a similar situation here. The Oncologist wanted Terry in and now he had to place his cards on the table.

He pointed out that Terry’s case was unique as he had never seen this particular type of Sarcoma in the location to the back. The entire case was in his view “something I have spent my life preparing for” Due to the rare type of Sarcoma candidates are also rare. He started listing procedures that he wanted to commence, he lifted his mobile and called the male Oncologist that he had mentored in Lanzarote … how small our world really is. He chatted with this guy and explained that he wanted to head the trials & document it. The battle just got upgraded to a war that Terry could go at with advanced technology and treatment. He instructed that another member of his team based in Tenerife was to spearhead treatment, Hospital Universitario de Canarias Santa Cruz Tenerife.

He then explained at length options that were available, the attempt to totally destroy this cancer would entail an extremely aggressive treatment or a milder treatment to contain the cancer. Without blinking a eyelid Terry answered “Destroy it, I am prepared to embrace any level of treatment you decide on. If this can help me and lead to helping other people then let’s do it” this is what make’s Terry a force to be reckoned with and a pure battle ready Warrior.

The oncologist smiled and went “Good” he then commenced the management plan. He told Terry that the biopsy the next day would be controlled under his guidelines, the samples would be analyised in two separate centre’s, one by his team in Madrid and the second by his team in Tenerife. Following that they would require a further blood test for deeper analysis. New heart test, bone scans and X-Rays were listed. The oncologist said he would commence the plan immediately.

I can only imagine the look on Terry and Andy’s faces as they left the centre to catch their return flight to Lanzarote.

Tuesday 27^th September  

Terry is admitted to hospital in Lanzarote for a biopsy to his back. These biopsies are not preformed with anaesthetics, I know how painful they are. Multiple blood test were done. They decided to keep Terry in overnight. His blood count was low and he had a blood transfusion. This can also be part of the build up to new treatments. Terry was then told he had an appointment to see the oncologist in Tenerife on Monday 3rd of October

In less than a week the goal posts were changed, because Andy lifted the phone. It’s that simple, no emails, no text messages just one call and look at what it accomplished

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October

Monday 3rd of October Tenerife

First meeting with the Tenerife lead Oncologist. This meeting was more introductory than treatment. During the past week the Oncologist from Madrid had fully discussed Terrys case with this lady. She would lead all procedures going forward, and Andy was by his side again.

With the blood test and biopsy already covered they will do a full scan on the 10th of October. The treatment planned includes 2 weeks of targeted radiotherapy at 25gm Grey, this would be considered as a medium level allowing scope to increase or decrease over the 10 day treatment, following this Terry will need to travel to Tenerife every 3 weeks for a 24 hour chemotherapy infusion.

The oncologist has decided against operating at this point, their intention is to reduce the mass of the tumour before surgical intervention.

During the meeting the oncologist handed Terry a card. This card contained the details of a Cancer support group in Spain with an office in Lanzarote that could assist in financial support.

Cancer Costs

Fighting cancer is costly. Over the past eight years between scans, consultancy meetings, blood tests, operations, excess charges, travel, prescriptions and more I have spent over €20,000. My private health insurance has cost €8,000 on top of that and it’s a confined expense, last week alone I had to pay out close to €500 between scans and blood test with further costs this week for oncology meeting.

Money doesn’t grow on tree’s and Terry has started to really feel the financial pressure, both Terry and Andy have shared the brunt of the cost to date. Flights, consultancy’s meetings etc have eaten into savings. The concern from now would be the enormous cost of flights & accommodation getting back and forth to Tenerife. But Spain is incredible at supporting cancer victims and this is what happened next.

Wednesday 5th of October

When I was growing up in Dublin the word Cancer was taboo, it was called “The Big C”. But my first close encounter with Cancer was in August 1994 when my Dad was admitted to hospital . Following exploratory surgery to his right colon they found a sizeable tumour and removed it. We were told that following the operation that he had months to live. On the 25th of November 1994 he died, he had left the hospital for only 1 day in all those month’s. He was 65. Throughout the 90’s and into this century cancer has remained a topic people shy away from. Cancer Awareness has dramatically improved in Ireland but we are years behind in financially supporting victims. Throughout my war against cancer I had no financial support, even this blog site and http://www.hlai.ie which I created to help Awareness is completely funded by myself. To date they have cost me about €5,000. We need to look at Spain to understand how other countries target both research & awareness.

Since the early 2000 the Spanish government have invested hundreds of millions into cancer research and awareness. The hospital in Tenerife are the front of ovarian cancer, Spain had the highest per population count of Ovarian Cancer in the world with a less than 10% survival rate. The Spanish government invested 20 million into Ovarian Cancer research and by 2014 their research facility in Tenerife had a 90% survival rate, they had flipped the survival rate. At the same time other research facilities throughout Spain we working on different forms of cancer. The University Hospital in Madrid the government had assisted in the creation of “The Research Group ATBsarc” specialising in Sarcoma (a rapid spreading aggressive form of Cancer”

The Spanish government & Spanish people recognised the financial strain of individuals fighting cancer. So various Cancer Support groups were established, generally funded by donations, government grants and the Spanish Lottery.

Following the recommendations of the oncology team Terry and Andy made an appointment with “Asociación Española Contra el Cáncer” for Wednesday 5th in Arriceffe Lanzarote. Their primary financial concern was Terry’s up coming accommodation costs in Tenerife. They were greeted by a volunteer lady who had battled liver cancer for 9 years. The words “means testing” generally refers to a person financial resources however in Spain for cancer victims it refers to the level of Cancer. Terry was documented Terminal Stage 4 Sarcoma so he was instantly registered.

And this is what this incredible organization will cover:

All flight cost for medical treatment, for Terry and Andy

Collection from the airport by a volunteer in Tenerife or Madrid

Accommodation in one of the organizations apartments close to the hospital for any length of stay during treatment (This includes the upcoming two weeks of continuous radiotherapy)

If they do not have an apartment available they will cover the cost of a hotel

Assistance for accompanying Terry, basically someone to help him

Availability of psychologist if required

A daily food allowance voucher of €30 during treatment and stays.  

Both Terry and Andy were overwhelmed emotionally. Terry was crying when he told me this, he felt humbled by these volunteers.  Talk about taking weight off a person’s shoulders. Other countries especially Ireland need to wake up and see how vital a service like this is.     

All of this was accomplished in less than two weeks. Financial Assistance, Complete treatment planning, pain management.

And after months of test’s Terry commences his clinical trials to attack the remaing cancer site

Monday 10th of October 2022 Tenerife

New CT-San but targeted to enhance the area effect by the tumor. This is all part of the build-up for Radiotherapy which is due to commence in two weeks.

Terry meet with the Radiologist Oncologist the following day and had the precision target tattoo’s   

Tuesday 18^th of October 2022 Tenerife

Early start at 7:30am for blood test followed by an ECG. His appointment with the Lead Oncologist was set for 10am with Andy beside him.

Monday 24^th of October 2022 Tenerife

Terry arrived in Tenerife with a friend called Freddy. Terry has keep a close relationship with Freddy for many years. I first met Freddy in Lanzarote in 1999. He owned Freddy’s Bar which was a late night local’s bar. Freddy is an absolute gentleman, originally from France but has lived in Lanzarote for a very long time. In my last visit to meet Terry in June we also meet up with Freddy. You couldn’t meet a more genuine caring individual. Andy was unable to accompany Terry on the 24^th so Terry asked Freddy to help. Freddy speaks perfect English, Spanish, obviously French and many more languages. He is an ambassador for Suicide Awareness which allows a great understanding of psychology and like most Frenchmen he is an excellent cook.  To be honest you can’t help but love this guy.

Blood test and scan were done with a lung capacity test. All showed that Terry was good to commence therapy on Tuesday. The therapy would start with a 24 hour Chemotherapy drip, followed by 10 days of radiotherapy

Tuesday 25^th – An early start with a pre –chemotherapy blood test, all proved good to go. The set Terry up with an IV portable pump connecting  the Chemotherapy drug called Trabectadina to Terry’s port line. He was not required to stay in the hospital and went back to the Cancer Support Apartment with Freddy. And so it began – a second battle to destroy Sarcoma with a Phase 2-3 Cancer Trial.

It is important to note that 24 hour Chemotherapy has a different effect on the victim, first line Red Devil was administered over about 30 minutes and even though Red Devil was a more aggressive chemo the effects of  Trabectadina over 24 hours is significantly harder to manage.

Wednesday 26^th. Terry since Sunday has had a significant increase in pain originating from the tumor site, Terry’s pain threshold would be similar to mine which is substantially higher that most people. However the pain experienced on a scale of 1 to 10 (1 the lowest and 10 the highest) was described by Terry as a 12. It had broken Terry’s pain barrier. This along with Chemo caused serious sleep issues.

They arrived into the hospital and Terry had the IV removed, 30 minutes later Terry had his first experience of Radiotherapy.

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November 2022

At this point in this article I want to keep a level of privacy for Terry and his family.

Earlier in this article I explained the importance of Terry making it as a candidate for these trials. The scientific Oncology team need to insure that all candidates are able to undergo not only the physical effects but the mental effects. Some people find it difficult to understand why the oncology team make decisions who should and who should not be accepted into these trials. Reality comes down to the fact that 99% of patients who are put forward for trials are already classed as terminal with no actual alternatives available. The decision on selections is based on not just to help future generations but to insure that the patient can withstand the level of therapy necessary to achieve success, this can be a sheer mountain for the patient with exposure to various advanced levels of trial procedures. Chemotherapy, Radiotherapy, Multiple Drugs, surgery and procedures like certain Stem Cell Transplants and Organ transplants. It is not an easy decision for anyone involved. The medical team want to insure that the patient, who is facing an end life situation should not pass in substantial pain.

Sara’s mum & dad arrived in Lanzarote to mind Tyler & free up Sara to fly to Tenerife. So Freddy flew back to Lanzarote as Sara arrived. This switch was very important to both Terry & Sara as they needed each other’s love & strength during a very difficult time. Chemotherapy and radiotherapy along with morphine to ease pain was having a extremely emotional effect on Terry but with Sara beside him he was a force to be reckoned with.

Tuesday 8^th Terry had a scheduled meeting with the lead oncologist. His blood work is excellent, All main organs like Heart Liver Kidneys have not been affected by this aggressive level therapy – which is quiet unusual with the levels of Radiotherapy and the position of the tumour. All side effects were expected by the oncologist. The oncologist is now planning the next 6 to 12 months, makes such a change since March/April when Terry was told it was unlikely that he would survive more than 3 months. Never should anyone underestimate a person’s ability to survive and here is a perfect example of positivity drive and pure devotion to beating the odds

Terry had stopped his morphine intake last Friday as the pain had receded. This is a significant sign that the cancer site has started to reduce in size again and the Oncologist appears convinced that treatment is working.

Wednesday 9^th Terry had his last round of Radiotherapy. Sara and Terry have returned home after 24 grueling days. Finally back home to see Tyler & Sara’s parents. But since Monday Terry has started to recover. He has crossed the crest of the wave and going to commence rebuilding himself. Back home is a great place to recover and gather strength before the next round of Chemotherapy

The schedule ahead is quiet busy for Terry. His next 24 hour Chemotherapy is next Tuesday and following that Terry will need to fly back and forth every week for blood tests, oncology meetings and Scans – these scans will also include a high definition NTAP CT Scan in early December.

More battles won and the war continues, cancer warriors have scares both mentally and physically but for us they are signs of victory

Tuesday 15^th . Sara & Terry returned to Tenerife for the second cycle of the 24 Chemotherapy. Blood test at 08:30 but a delay in starting the chemotherapy by nearly 4 hours. Unfortunately, this can happen especially with clinical trials. Everything is checked and rechecked to insurer that Terry is okay for treatment. The oncologist must sign off on everything before administration. This can really test a patient’s patience (woops) but Terry is getting used to this. As luck had it, Sara had booked a later flight back to Lanzarote for the next day.

Wednesday 16^th. Sara & Terry fly home to Lanzarote. Terry had a restless night on Tuesday, the constant pumping of chemotherapy can do this, its difficult to sleep during treatment. But no initial effects.

Thursday 17^th . Generally speaking, between 48 hours and 72 hours after chemo the hardest effects start to show. Terry was unable to hold down food. On Friday Andy called the hospital.

Friday 18^th . Andy was visiting Terry at home as he was very concerned about his nausea. The oncologist felt that the nausea tablets needed to be increased from 1 a day to 3. They are actually a very small dosage leaving a lot of room to increase them. And it worked very fast. Apart for an upset stomach Terry began eating and drinking again. 

Tuesday 22^nd . Terry has to travel to Tenerife once every week between therapies for blood test and meeting the consultant Oncologist. Some great news again, Terry’s blood test are excellent, he has started to regain weight lost, there is still no further pain from the tumor site. The oncologist is more than happy with this. The fact that the pain is almost gone is a sign that the treatment is working. They are now discussing 6 to 12 months from now -considering that Terry was given 3 months to live in March this is simply incredible.

Birthday Boy Terry 28th of November

Terrys birthday is the 28^th of November and in true form of this warrior he has asked that people donate to the charity Asociación Española Contra el Cánce this is the organization that pay for flight’s accommodation and everything associated with the cost of travel including a companion to accompany Terry. They are funded by donations and have been an incredible support for Terry.

Facebook link Lets all do a donation to support this organisation and make Terry’s birthday a great one

Happy Birthday Terry and looking forward to the big one next year.

November 29th

Terry and Andy have an early start for a 8:30am Blood test followed by Terry’s Oncology meeting (Travelling from Lanzarote to Tenerife). There are about 2 hours wait for blood results and then a meeting with the lead Oncologist

The oncologist discussed all side effects and discussed how well she considers the treatment to be doing but a lot more will show following the main scan on 12/12/22

Blood results were good. The Oncologists prepared all the appointments for December including meetings, scans and third cycle of Chemotherapy:

12/12/22: CT-NTAP Scan:

13/12/22 : Blood test, Followed by Oncology meeting and then commencement of 3^rd Cycle of 24 hour Chemo

14/12/22 Removal of 3^rd Chemo and meeting Oncologist

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December 2022

December 6th – Día de la Constitución  Constitution Day

The Francisco Franco was head of state in Spain from April 1, 1939, until November 20, 1975. Spain needed a new constitution and political system after his death. General elections were held on June 15, 1977. The newly formed parliament started drew up a new constitution.  The Spanish Constitution of 1978 was approved by 88 percent of the people of Spain in a referendum on December 6, 1978.

December 8th – el Día de la Inmaculada Concepción Immaculate Conception Day  is a public holiday with religious origins.

The origin of this celebration can be traced back to the mid-19th century and Pope Pius XI, who wanted to commemorate the birth of the Virgin Mary. La Virgen María was born on September 8th, therefore they subtracted nine months to make the day of her immaculate conception December 8th.In Spain, this day also marks the date of The Battle of Empel, also known as the Miracle of Empel (El Milagro de Empel ). It was an unexpected Spanish victory in 1585 in the Netherlands as part of the Eighty Years’ War, where a greatly outnumbered and surrounded Spanish force near the village of Empel won against its Dutch enemies. Prior to battle, a Spanish soldier who was digging a trench unearthed a painting of the Immaculate Conception of Mary, seen by Spanish troops as a sign from God. A sudden drop in temperatures meant that Dutch ships were trapped in by frozen water and Spaniards could attack and beat them in battle, confirming the divine intervention. In 1892 Maria Cristina of Austria, Queen Regent of Spain, proclaimed Mary of the Immaculate Conception patroness of the entire Spanish Infantry, and thus December 8th became a public holiday in Spain.

December 12th – Y es el cumpleaños de Sara Sara’s Birthday

Not a public holiday but it should be. I have spoken a lot about Andy, Freddy and so many others that have helped – but I have not said a lot about this young lady. Sara has been there every step of the way. She has watch Terry battle, cry, get aggravated, jumped for joy, struggle with physical and mental battles. I have mentioned quiet a number of times that when couples are faced with a cancer diagnoses and treatment both of them are seriously affected from day one, There are emotional rollercoaster’s but “Together We Are Stronger” is a cure within itself.

“Sara as I mentioned in June you are an incredible rock for Terry. You are the force behind him and beside him (I could add a few positions but I value my own life)“.  

Happy Birthday Sara

Terry and Sara flew over to Tenerife for Cycle 3 and scans. Sara’s parents arrived back in Lanzarote on the 8^th of December. They had to return to the UK at the end of November as Sara’s grandmother has passed away (On her Dad’s side) – May she rest in peace. Sara’s parents have continued to help and support the family in every way possible.

As I have pointed out it is impossible to list the amount of people who help and support Terry and Sara. I try to include as many as possible in these articles. But I would like to mention another couple that have been there every step of the way. Sinead and Danny.  I first met Danny when he was part of the band in Charlie’s Bar Lanzarote along with Andy. Danny also played in Linda’s bar “The Bodhran” where Terry worked prior to working with me in Nancy Spain’s. And Sinead who also worked with Terry and myself in Nancy Spain’s over 20 years ago. Danny and Sinead have help in so many ways and have been so supportive to Sara, Terry and Tyler. This photo was taken in 2001  

December 13^th

Third and last cycle of Chemotherapy for 2022.

But Terry met with the oncologist for the report on his Scan.

Here is our early Christmas present:

• No sign of any new growths
• No sign of any previous recurrence
• The main tumor site has not increased but may have reduced marginally, as the report was prepared almost immediately after the scan further and greater detailed reports will follow. As a cancer trial patient and with the clout that Terry’s senior Oncologist has the reports are produced fast. The oncologist told Terry that it is exactly as she expected it to be. The oncologist suggested that the next Scan in late January 2023 will be a much better indicator for reduction in mass (Mass is typically defined as the amount of matter within an object). We are already aware that the centre mass is of the tumor is dead so the chemotherapy needs to work through this to destroy the outer layer.
• Terry has now regained nearly 6 kilo’s in weight
• Terry’s bloods are normal

To top this off Terry went for a meal & bottle of Champagne to celebrate Sara’s birthday last night. During our call today Terry was getting changed to go out shopping with Sara and grab some lunch. What a fantastic change from less than six weeks ago.

Next meeting will be in Tenerife on the 27^th of December, which will be blood test and Oncology meeting. I will update this page at that point.

On a separate note: I have just completed our new website for Lymphoma awareness that runs in conjunction with this blog site, www.hlai.ie . The site is quiet substantial and has a number of links to this site included. It has first page appearance on leading website browsers like Google and is fully responsive with smart phone’s.

It has been a long year for all concerned and especially for the Green family. I will continue to write about Terry’s battle but it is astonishing to think that in March Terry was told that he had 3 months to live yet here we are nearly 10 months later with his Oncology team discussing procedures over the next year. Never underestimate the power of self motivation and positive thinking. Terry’s family and friends have been a fundamental part of inspiring and empowering Terry’s motivation to win this war against Sarcoma

Last update of 2022

27^th of December

Terry’s last meeting with his oncologist for 2022. Early flight to Tenerife and the day starts with blood test followed by a heart scan and meeting with the Oncologist.

Heart Scan was excellent (the heart tends to take a substantial hit during Chemotherapy as the drugs work their way around the body via the blood stream.) This particular form of chemotherapy can have a negative effect on the heart but in Terry’s case it has not.

Blood test was good with the exception of White Blood cells that appeared low. This is not unusual as the aim of chemotherapy drugs is to reduce the immune system so that the drugs can have a better impact on the targeted areas, in this case the last tumour in Terry’s back. During the gap between therapies the white cells tend to recover slowly and it is a very positive sign that treatment is working. A low White cell count also indicates that the immune system is not able to fight off infections and care needs to be applied so that Terry does not get any colds or infections, a cold to a chemo patient is like a flu to people with a healthy system.

Natural ingredients to improve your immune system:

1. Berries. With a wide variety to choose from, you can’t go wrong adding these little nutrient packed sweet treats to your regular diet. From local blueberries and blackberries to imported goji or açai, these tiny little morsels are packed with vitamins and nutrients to give you a boost you need.
2. Fish oil. Fish that have high levels of Omega 3 fatty acids such as salmon, tuna or mackerel are known to increase activity among white blood cells, which fight infection. These healthy fats help your immune system and are also good for your heart and brain too.
3. Leafy greens. Dark vegetables such as spinach, kale and collard greens are known to have high levels of vitamin C along with antioxidants and beta carotene, all of which help fight infection. They are also good for your heart, brain, and gut.
4. Nuts and seeds. Nuts such as almonds and walnuts as well as seeds such as sunflower contain several vitamins and minerals (B-6, magnesium, phosphorous or selenium) that help regulate and maintain your immune system. Add them to your salads or enjoy a handful for an energy-boosting healthy snacks
5. Citrus fruits. Most citrus fruits such as oranges, tangerines, lemons, and limes contain high levels of vitamin C, which is thought to help fight infection by increasing your white blood cells. Whether you eat them whole, or squeeze the juice onto your food
6. Poultry. Chicken soup is good for more than the soul. Poultry is high in vitamin B-6, which can reduce inflammation and is needed in the creation of new red blood cells, and zinc, which increases production of white blood cells.
7. Olive oil. A staple in the Mediterranean diet, olive oil is a healthy fat that is good for your heart and brain. It also gives your immune system a boost through its ability to reduce inflammation in your body.
8. Vegetable Soup my personal favourite. You can use an abundance of various veg for this, I included carrots, parsnips, turnips, potatoes, leeks and add a breast of chicken. Very healthy and tasty food. I also make a leek soup with potatoes and onions.

These are all easy to make and great for people undergoing chemotherapy. Chemo tends to damage our taste buds so food like the above help.

Oncologist meeting was on time for a change. But the team are very happy with Terry’s health and attitude. They expect the white cell count to improve prior to his next chemo on the 3^rd of Jan 2023.

What a year for this family. Terry has battled hard and has won battles that the oncology team were concerned about but through every step of the way Terry has kept positive and motivated.

This entire article does not fully reflect the struggle to stay fit and keep a positive mental attitude. It takes an incredible amount of willpower to keep our minds out of the darkness that can cloak our minds. 10 months can feel like 10 years for cancer patients especially those that have been diagnosed as terminal. My own experience of this was over 3 years and I can assure you its not easy, even after therapy during remission it can be a constant uphill battle but with an end in sight it becomes easier. But what a rollercoaster of a year this has been. And 2023 will bring on even a great level of attacking this cancer, Terry is leading the way for his medical team, his positive motivated attitude is a driving force for the team. This clinical trial is cutting the way for research oncologist to map out other victims battles and save the lives of those victims of this dangerous cancer.

I will be adding this page to the original article and commencing a new page for 2023. The 2023 article will commence with a full description of each procedure Terry has had and will then lead onto his continued battle and chemo approach. I am hoping to convince Terry to write part of this himself, but it is Terry’s idea to beat this cancer and tell the world how he accomplished it

So to finalise Terry has a fantastic family and friend’s team working with his every day offering help and care whenever needed . The combination of these wonderful people with a highly motivated medical team plus Terry’s own positive mental attitude is a force beyond description.

As above this page will merge with the first page on the first of January and I will update the 2023 battle as Terry continues to beat all odds.

Port Aventuna World

28th December 2022

A well needed break for Sara, Terry and Tyler but with a difference.

Port Aventuna World

Such a long year for this family. Receiving a prognosis in March that was classed as Terminal Stage 4 Sarcoma, with a 3 month survival rate. To celebrating Christmas with a three day visit to this amusement park outside Barcelona Spain.

The past 9 months have been a rollercoaster so what does Terry decided to do on his second day…

Terry decided to beat one of his fears, rollercoaster’s – Seriously….

So our amazing Stage 4 battle warrior who has beaten every challenge thrown at him decides to step on a rollercoaster – possibly the fastest one in Europe.

Terry described the little old lady who sat next to him …. She had just removed her glasses and was about to sit back and brace herself when Terry, with a massive smile, said “I’m terrified” holding up his shaking hand. Can you picture it ? I can, and had to stop writing due to laughter . But that little old lady must have thought “Oh God I’m sitting beside a nutter” . Terry appeared to have broken the sound barrier – venting out screams in English and Spanish, mostly “Oh F**K” followed by much much more.

“Ferrari Land’s Vertical Accelerator is the fastest (0-180mph in five seconds) and tallest (112m) roller coaster in Europe. Furious Baco (Min. Height: 1.40m) boasts a horizontal catapult that propels you to 135 km in three seconds”

Just try and imagine a Terminally ill Stage 4 cancer patient currently undergoing advanced clinical trials sitting beside you like that. It is inspirational and shows the character of this incredible man. I’ve been to hell but I don’t think I would climb onto a rollercoaster. And you can see the pure joy

There is no stopping Terry he has beating the odds months ago and without doubt 2023 will be a year that Terry will beat Cancer.

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“The Impossible Dream“

Rhydian Roberts

“To dream the impossible dream
To fight the unbeatable foe
To bear with unbearable sorrow
And to run where the brave dare not go

To right the unrightable wrong
And to love pure and chaste from afar
To try when your arms are too weary
To reach the unreachable star

This is my quest
To follow that star
No matter how hopeless
No matter how far

To fight for the right
Without question or pause
To be willing to march, march into Hell
For that Heavenly cause

And I know if I’ll only be true
To this glorious quest
That my heart will lie peaceful and calm
When I’m laid to my rest

And the world will be better for this
That one man, scorned and covered with scars
Still strove with his last ounce of courage
To reach the unreachable, the unreachable, the unreachable star

And I’ll always dream the impossible dream
And yes I will reach the unreachable star!“

Source: Musixmatch & video YouTube

Songwriters: Mitch Leigh / Joe Darion

Personal Notes to two incredible people

Andy – What you have accomplished is way beyond what I have written about in this article. You have been an incredible support for your family, your focus and determination has saved Terry’s life more than once. I am proud to know you mate.

Terry – You are a hero of heroes, a warrior who has battled every obstacle, an absolute force to be reckoned with. The fight ahead will be challenging both mentally and physically but I have no doubt that you will win

 He Ain’t Heavy, He’s My Brother – The Hollies 1969

“The road is long With many a winding turn
That leads us to who knows where, who knows where
But I’m strong Strong enough to carry him
He ain’t heavy, he’s my brother

So on we go His welfare is of my concern
No burden is he to bear We’ll get there, For I know He would not encumber me
He ain’t heavy, he’s my brother

If I’m laden at all I’m laden with sadness
That everyone’s heart Isn’t filled with the gladness of love for one another

It’s a long, long road from which there is no return While we’re on the way to there Why not share… And the load doesn’t weigh me down at all
He ain’t heavy, he’s my brother”

Songwriters: Bob Russell / Bobby Scott

“Anita picked this song and what a choice. The words do justice for Terry’s battle and those who support him.” And I love the embedded photo for this video. We consider fighting cancer to be a war. The image in my mind is Andy helping Terry with family & friends in the background covering them. Our weapons are physiological and medical. But it is a war and supporting my brothers in arms is unquestionable

Next Post and Terry’s continued battles against Saroma 2023

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