How Long Will I Live ? Living with Cancer

The greatest unanswered question in history.

Lymphoma Awareness day 15th September 2024

Cancer victims in particular find this question more of a reality than a need to know. It doesn’t matter what type of cancer or stage. I’ve asked this more than once, the answers ranged from, years, months, weeks to days and once in 2017 “hours”. Sometimes ignorance is bliss but unfortunately I tend to consult with Professor Google.

All my life before diagnosis in 2014 I took risks, some were extremely dangerous. But I survived each event. But from 2014 onwards I created a different approach. You can’t change everything but reasons to survive have outside influences.

I’m going to explain in detail some of the changes, influences and much more.

My primal instincts are strong, due to having only 45% hearing since childhood other senses are stronger. Gut feelings have been a way of life. In October 2013 we boarded a flight to Fuerteventura for a week holiday. I sat on the flight and suddenly had a massive feeling for doom, something I have never experienced before.

Our holiday was good but I was very alert, the feeling that we were about to be attacked was there, its what my brain translated from the “doom”. I couldn’t find anything else that would alert me like this, business was improving well with a large number of new contracts on the horizon, I had 35 employees and overall I was in good form.

We got back to Ireland and a few days later I got hit by a kidney stone, nothing unusual with that – I was diagnosed in 1992 with recurring kidney stones which can range from a dozen a month to 35. These stones are generally small enough to pass from through the kidney to the bladder but every couple of years they can be too large to exit the kidney or get caught in the ureters and require medical attention. My urologist ordered a CT Scan and yes indeed it was a 7mm trapped stone. To release these I have to undergo a surgical procedure – the urologist managed to break the stone slightly but he placed a stent in to widen the ureters which was removed 6 weeks later. But the dark feeling of doom still remained.

And then on the 14 February 2014 I got the answer “You have a form of Blood cancer called Lymphoma”. The doom feeling eased back to more of a fight feeling.

When the Oncologist initially diagnosed me and prior to my first PET scan I was considered as Stage 3A Hodgkin Lymphoma, he felt the eye issue was a separate event. All this changed a few weeks later after the PET scan – the staging was increased to Stage 4A Hodgkin Lymphoma – Large B Cell LLe, right lung small tumour , 6 sites on the liver and my right eye, the eye was now considered part of the lymphoma attack which was extremely rare with only one other victim been diagnosed 15 years earlier. But the battle began very fast following the PET. First line treatment was 6 months of ABVD Chemotherapy, they had to wait 6 weeks following that to rescan. By October 2014 I was told the treatment had resolved 90% of the sites, the remaining affected area was the right side of my neck, the eye damage had also been resolved but I had lost about 20% of my sight in the right eye. The decision to move to substantial levels of radiotherapy was made. This is where it started to change. Following a gruelling 6 weeks of intense targeted treatment my Radiologist Oncologist classed me as Terminal Stage 4 Hodgkin Lymphoma with 6 weeks to live. The first of 3 terminal diagnoses. And just like that the doom feeling from 14 months earlier was answered, but I wasn’t ready to die.

The articles in this blog cover ever thing that happened between 2014 and 2024, but to summarise treatment would look like this

• March 2014: A.B.V.D. chemotherapy for aggressive high-level treatment lasting 6 months
• June 2014 Bleomycin Pneumonitis
• November 2014: Extreme-level targeted radiotherapy for 6 weeks
• Multiple biopsies and operations from 2014 to 2016
• 2016: Partial remission, assumed to be in remission
• November 2016: Left kidney failure
• March 2017: Diagnosed with Hodgkin’s Lymphoma, multiple lymphoma, Terminal Stage 4 B
• April/May 2017: R-I.C.E. chemotherapy, extremely aggressive
• June 2017: Stem cell harvest
• July 2017: B.E.A.M chemotherapy, considered the most aggressive medical chemotherapy
• July 2017: Full Stem cell transplant, within a week it was considered to have failed and I was told to make whatever calls I needed to make over the following 4 hours and the palliative care level would be increased to final stage and I would die within 3 days. But I crawled my way back out of hell and lived to tell the tail
• April 2020 COVID19 attack. No medical intervention but advised to isolate until vaccine was developed
• IVIG Sept 2022

But be under no illusion – surviving cancer is one thing, surviving Stage 4 cancer is difficult but surviving Terminal Stage 4 cancer is extremely rare. With all the aggressive treatment used, there are long term consequences medical, physical and mental. And these consequences are really what I am exploring in this article.

Long term Medical Prognosis following aggressive chemotherapy

The likely outcome or course of a disease; the chance of recovery or recurrence or other medical complications

This is a difficult one based on the extreme rarity of my Cancer. The Terminal Stage 4 diagnoses stays with you, even after remission. In real terms it is an unwritten chapter for medical professional, one that keeps changing as more people survive but the studies can take years to form, each victim is different, age, medical history, lifestyle, diet, geographic location, religion, culture, employment. Mental health, male, female, levels of chemotherapy, type of chemotherapy, radiotherapy levels, operations and so much more come into play.   However in my case it is unique and they have little to compare with for a prognosis.  

What they can do is speculate on the possible outcome, based on other forms of cancer and the levels of medical procedures used. These are some of the long term effects based on levels of aggress chemotherapy only and based with a maximum of 5 years. And these are just a few

Cognitive difficulties – Problems with a person’s ability to think, learn, remember, use judgment, and make decisions. Signs of cognitive impairment include memory loss and trouble concentrating, completing tasks, understanding, remembering, following instructions, and solving problems. Greater risk and likelihood of early set dementia  

Heart problems  Cardiovascular disease is any disease involving the heart or blood vessels. CVDs constitute a class of diseases that includes: coronary artery diseases, heart failure, hypertensive heart disease. According to Anita this is impossible for me as I do not have a heart it’s a brick on a length of string (Bitch)

Strokes & Blood disorders Stroke is a medical condition in which poor blood flow to the brain causes cell death. There are two main types of stroke: ischemic, due to lack of blood flow, and haemorrhagic, due to bleeding. Both cause parts of the brain to stop functioning properly and refers back to cognitive difficulties the introduction of aspirin has helped this and may stop it developing

Lung Disease refers to several types of diseases or disorders that prevent the lungs from functioning properly. Lung disease can affect respiratory function, or the ability to breathe, and pulmonary function, which is how well lungs work

Any one of the above four are considered extremely dangerous. And these are just a few of the possible medical complications.

The reason for mentioning the “maximum of 5 years” is that my oncologist felt that it was unlikely that a person of my age and medical history including terminal stage 4 multiple lymphoma could not survive more than 5 years. Nice to be able to write this 7 years after the stem cell transplant.   

As for the list I can’t deny that they got so much right. My lungs were damaged during ABVD causing The B is Bleomycin and caused bleomycin lung damage in 2014, my right lung never recovered. My immune system like all patients was damaged by treatment, especially with the stem cell transplant. It was recovering well but April 2020 when I got COVID19 it was destroyed. Over the next 2 years I had multiple lung infections and pneumonia attacks, My oncologist decided to introduce IVIG which in reality stopped the pneumonia attacks. I have not had another pneumonia attack in two years.   

I had a suspected TIA (Mini Stroke) earlier this year. More recently I have what was classed as a minor heart attack in July. I was also placed on a blood pressure table due to changes since last year with my blood pressure . Unfortunately that accounts for 3 of the 4.   But the 4th is currently been watched Cognitive difficulties.

More recently Cognitive difficulties have started to appear, at first I thought nothing of them, putting them off to simple forgetfulness. But it has been progressive and people have started to notice. Things that would never really happen or that I would never do, leaving my car keycard in the ignition for 2 days (If you know me you would know how this alone would be unheard of),  Forgetting close friends names during conversation, forgetting important phone calls and needing more sleep. Its not just age related and the worry is onset dementia  

  

I had to check to make sure that dementia is not hereditary. I tend to call Alzheimers dementia, dementia is an overarching term that refers to a range of symptoms affecting cognitive abilities, while Alzheimer’s disease is a specific type of dementia characterized by progressive memory loss and cognitive decline. Other types of dementia exist, each with its own distinct causes and characteristics. So they are like brothers and sisters.

The Mental health situation:

The Mental health situation: Cancer changes a person

In previous articles I was very much against this, I had felt that Cancer changes everything around the person, but I was partially wrong. It is in reality a combination of both.

I was 51 when I was initially diagnosed. Born in 1962 in Dublin, the word Cancer back them was feared and not discussed. It meant certain death, thankfully that attitude has changed, it is still feared by many and in Ireland a large proportion of the population still find it a difficult topic to talk about. But 2014 completely changed my attitude about cancer and I do not hesitate to talk about it. I have a serious dislike for the term “The Big C” a term heavily used in Ireland even today. “Just say Cancer ” is a more modern answer and meaniful.

I have produced a number of mental health articles over the past 8 years, mostly dealing with mental health during treatment and in the remission period. But this article is more about living with cancer or more to the point of life after cancer and the effects on my mental health.

At 61 I have had to claim a invalidity pension, did I want to retire and go on a pension? Absolutely not. Covid resulted in a job loss for me back in 2021. It was impossible to secure employment, 40 plus years in Logistics, Transport and Warehousing at senior to director level and I couldn’t even get a forklift drivers job, seriously I applied for everything from store hand to senior management. Nearly 3 years searching but the Oncologist stepped in. He was very concerned about the effects that this was having not only on my mental health but on my physical health, the stress of been rejected was causing serious issues.

But I can’t sit still, I started working at an early age, after school or summer holidays from school, At 12 years old I delivered newspapers, ran a football pool, by 16 I was employed during the summer by a camping and caravanning company and Dunnes Stores. By 18 I had entered Freight forwarding and by 21 I was a manager in Freight forwarding. Work for me was never 9 to 5. I was a senior manager/ director throughout the1990’s /2000’s and in 2010 I was a joint Managing Director of a substantial transport company. All the way up to 2017. In April 2017 I was placed in a position that meant I could no longer make financial decisions due to upcoming aggress chemotherapy, that forced the closure of my business, it took nearly 2 years to convince the oncologist to allow me to re-enter the business world. And then in 2019 COVID hit. Between 2018 and 2019 I had established and merged a large company into a Cork based business, I had set up a team to create this with no assistance from the employer, it flourished, in 2020 I caught Covid which ended up with my Oncologist refusing to allow me to be office based, either work from home or don’t work at all attitude. I managed this for 6 months but my employer was not happy and we ended up in an argument that caused a split in ways. The vaccines etc only came in 2021 and the oncologist waited till late 2022 to allow me re-look under conditions at employment.

 The impact of this was enormous on my mental health, in my view I was fit enough to work, my medical history was a disaster in trying to gain employment. So I launched into renovating our home. By 2022 I had sold our Cork home and moved into Kerry, I then launched into renovating the house in Kerry but still constantly looking for employment. The renovation were substantial in both houses. By 2023 I was in financial difficulty and we decided to sell our home and downscale. The house sold within 7 weeks from start to finish. Downsizing however proved to be difficult, there were too many people doing the same thing. But I found a house.. it was by no means downsizing as the square footage of our Kerry house was 1050sqf and the new home in Galway was 1,550sqf. It needed major renovation which on writing this took over 25 weeks none stop every day to complete. And I covered 99% of all the work myself. Am I capable …yes.  

But the fact remains that it is so fucking difficult to make ends meet financially existing on only government invalidity pensions. New wage descriptions are classed as Minimum Living Wages as against basic wage, in reality in Ireland the Invalidity Pension is a lot less than half what is considered a Minimum Living Wages.

But the recent health scares are been dealt with. My blood pressure is back to a great level at 120/75, the heart issues I seriously consider was due to a flat out 2 weeks of tiling, I was working none stop at 12 hours a day for 14 days straight. It feels fine now and my doctor is doing a repeat ECG next week. Aspirin as blood thinners are preventatives for any TIA’s. And breathing exercises for the lungs, added to keeping away from tile adhesive (which triggers lung problems ) and of course the house is finally finished, few odd jobs and some gardening left.

The Cognitive difficulties are also been monitored, I am hopeful that this was more due to other health issues that are been dealt with. But I still have to resolve working issues. If I can fill that gap I seriously believe my overall health will improve.

Teeth ??

Teeth – Keeping in mind that the majority of chemotherapy patients suffer hair loss, “hair” is basically all body growth stops including the production of keratin (Keratin is a protein that helps form hair, nails and your skin’s outer layer (epidermis). It helps support your skin, heal wounds and keep your nails and hair healthy. There are 54 kinds of keratin in your body) , eyebrows, head hair, nails and teeth (Hair and teeth share common developmental mechanisms, though their structural components are distinct. The hair shaft is made of keratin filaments that are highly cross-linked. Tooth enamel matrix is primarily composed of enamel proteins that are degraded and replaced by minerals during enamel maturation and nails share keratin) So take greater care of finger and toe nails (I suggest nail nurse by Rimmel, use before and after each therapy day) and try keeping your mouth well rinsed with mouth wash   (I used KIN products ) your oncology nurse will help indicate what products are best for you. But long term there can be underlying issues and permanent damage And yet another result of aggressive chemotherapy. Tooth decay and gum infections are not uncommon in normal life. But for cancer patients it is more prominent. Keeping in mind that the majority of chemotherapy patients suffer hair loss, “hair” is basically all body growth stops, eyebrows, head hair, nails and teeth. In my case it was bad, ABVD in 2014 took a hard hit at my gums but the excessive level of radiotherapy in December 2014 seriously damaged both the gums and bone. I lost about 4 back teeth within months and my dentist struggled to keep the remaining teeth. The stem cell transplant in 2017 caused even more difficulty with further damage to the gums, which in truth never recovered. By 2023 my lower teeth started to get loose and 4 had to be removed and replaced with dentures, the upper teeth were also in trouble but the dentist helped improve this, the treatment was expensive. I had requested that the top remaining teeth should be extracted, I have two crowns and only 5 natural teeth on the top, and 2 of these teeth were in trouble. By August 2024 they were all in trouble. One of them snapped and another became very loose. As I have moved home I had moved to a new GP and Dentist. I would estimate that my teeth alone have cost about €6,000 to date and the current problem will cost about €1200

So why am I placing what is a medical issue into the mental health section ? I value my smile, and over the past number of years that smile tends to be with my lips closed, the teeth do not have a good appearance and this is difficult for me, it affects my confidence. I need to get back to a beaming smile, it helps others and it seriously helps my own self esteem. I don’t mind dentures and in reality they make life so easy, its not just the smile or self esteem but the enjoyment of eating food. My original dentist would not remove any tooth that she felt could be saved, which I appreciate and she was very aware of my health issues including terminal diagnoses, I got the distinct impression that she felt I was on my way out and investment into dentures would have been a waste of money. Please do not misread this, this wonderful lady was my dentist for nearly 25 years, she was brilliant and I had great respect for her.       

Finance

An interesting article published in Ireland this August. No complaints ? seriously…. People who are denied finance rarely complain, they see it as just a refusal and if they ask why not the general answer is “You do not reach the level of income under our company policy” or some other crappy answer. But it is a very good article, but the discrimination is not just limited to finance as you can see above. With my current income I absolutely know I couldn’t get any form of a loan, so the application would be refused anyway, before any medical situation would be considered. We struggle as it is so a loan would only add greater pressure on us

The Lymphoma Coalition is a global organisation dedicated to improving research and patient treatment with research into patient/survivor experience and expectations. I hope to work with this organisation as their mission is all about awareness and representing cancer victims and survivors.

“The European Initiative to End Discrimination against Cancer Survivors”

Another great read and link to EDACS below

HOME

The Lymphoma Coalition

Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to patients with lymphoma, was formed in 2002 and incorporated as a not for profit organisation in 2010.

The need for a central hub of consistent as well as reliable current information was recognised as well as the need for lymphoma patient organisations to share resources, best practices, and policies and procedures. With this in mind, four lymphoma organisations started the LC. Today, there are over 80 member organisations from over 50 countries.

LC’s current strategy is focused on ensuring impact within two pillars: information and advocacy.

And from their advocacy pillar I have been invited to join with them and advising the guidelines committee EHA on patient values and care with a view to appoint me as an advisor to the EHA Guidelines Committees for the update of the Hodgkin Lymphoma Clinical Practice Guidelines. As a long term Stage 4 survivor it is viewed that my experience with surviving cancer can help within these guidelines

Here are two of the Coalitions reports

GLOBAL HEALTH LITERACY REPORT CARD

INTERNATIONAL LYMPHOMA PATIENT CHARTER

more about this organisation below

Conclusions

I am actually smiling at the start of the conclusion. Why ? because even with all this crap in our lives I remain happy, we have a roof over our heads, food on the table and we get on with life. Yes I am ranting about employment and all the remaining discrimination thrown at cancer survivors and victims, it is wrong and attitudes need to change.

My health is my wealth and that also places a smile on my face, because I am not wealthy, so does that mean I am not healthy… ponder on that if you can.  

But seriously I do have health issues but they are manageable and I tend to adapt my life to improve my health. My diet is good, my weight and physical ability remains stronger than 20 years ago. My original fighting weight as a Middleweight was 85kgs as I gained weight for competitions, which is light for a middleweight but as a Welterweight I would have killed someone – my Grip Strength even at that age was considered extra strong and remains at about >55kgs (great for shaking hands), my training weight was between 78 and 80kgs that was 42 years ago. Today I am not as lean as I was but my physical strength and weight is still averaging 78 to 80kgs.

And as for employment. If any company discriminates against my application because of my medical history then the reality is I would never work for them. It’s simple really, don’t bother advertising for people if you are not prepared to open your minds. What I have learnt over the past number of years is to be very selective and if I decide to forward an application then have the courtesy to respond, For me to return to a working environment would mean having my oncologist certify that he is happy to for me to return to work, which I am sure given the right situation he would not hesitate.. Recruitment people need to also accept that previous employers are “previous” for a reason and they do generally hate to see ex-employees doing well and more to the point that they simply don’t want other businesses to benefit from the employees knowledge. People don’t leave bad jobs they leave bad bosses where the company culture and values have failed

I most certainly will not give up, and I am particularly hard to beat;  and for all cancer victims never give up, our time will come soon enough   I have zero tolerance towards bullies and tend to speak my mind, speaking our minds can lead to disagreements with company directors and this can lead to a situation where the only route open to walk away…

I have featured this song on my website and on some articles within this blog site. It means a lot to me, As I continue to live different parts of the song reflect my life and my shattered dreams. This impressive classic describes a person who’s life has dramatically changed, where every attempt to improve has failed but with the support of friends “Its going to be alright” and “your not beaten yet” It is a song that put mental health into the spotlight covering depression, unemployment and suicide. Hard to believe that it was released 38 years ago.

Don’t Give Up

Song by Peter Gabriel with Kate Bush (1986)

In this proud land we grew up strong, we were wanted all along
I was taught to fight, taught to win I never thought I could fail

No fight left or so it seems I am a man whose dreams have all deserted
I’ve changed my face, I’ve changed my name but no one wants you when you lose

Don’t give up ‘Cause you have friends’ Don’t give up you’re not beaten yet
Don’t give up I know you can make it good

Though I saw it all around never thought I could be affected
Thought that we’d be last to go It is so strange the way things turn

Drove the night toward my home the place that I was born, on the lakeside
As daylight broke, I saw the earth the trees had burned down to the ground

Don’t give up you still have us. Don’t give up we don’t need much of anything
Don’t give up ‘Cause somewhere there’s a place where we belong’

Rest your head, you worry too much It’s going to be alright
When times get rough you can fall back on us
Don’t give up please don’t give up

Got to walk out of here I can’t take anymore
Gonna stand on that bridge keep my eyes down below
Whatever may come and whatever may go
That river’s flowing that river’s flowing

Moved on to another town tried hard to settle down
For every job, so many men so many men no-one needs

Don’t give up ‘Cause you have friends Don’t give up You’re not the only one
Don’t give up No reason to be ashamed Don’t give up You still have us
Don’t give up now We’re proud of who you are
Don’t give up you know it’s never been easy, Don’t give up ‘Cause I believe there’s a place
There’s a place where we belong

Songwriters: Peter Gabriel

Don’t Give Up lyrics © BMG Rights Management, O/B/O DistroKid, Sony/ATV Music Publishing LLC, Warner Chappell Music, Inc

Blood cancer awareness month September and World Lymphoma Awareness Day on 15 September 2024

Today marks the 20^th anniversary of World Lymphoma Awareness Day (WLAD which is over two decades of raising a lot of awareness about lymphomas and the needs of patients and caregivers . This year they’re focused on the emotional effects of living with lymphoma and the campaign theme for WLAD is “Honest Talk: It’s time to get honest about how we’re feeling”. Honest conversations between people with lymphoma and their healthcare team can help address any emotional concerns and connect patients to specialists and resources.

Lymphoma Coalition is encouraging individuals to download the Honest Talk Conversation Starter, here. If having the conversation feels awkward, the Honest Talk postcard can be shared with healthcare teams or others to help open a dialogue and address concerns. 

And the Lymphoma Coalition have commenced their “Lets talk about it” open discussions aimed at getting patients and survivors to openly discuss issues with their medical teams. Throughout my articles and consulting with patients I keep advising people to have open discussions with their medical teams, it helps everyone involved. The coalition are set it getting more local support to help with this and this is something that I have been involved with for many years with The Cork Cancer Centre, originally formed as The Girls Club and Blankets of Hope, This centre has provided support for all forms of Cancer since it was formed in January 2014 by Ann Dowling Spillane and Linda Goggin James, Ann unfortunately passed away in Sept 2017 but Linda has run the operation herself since then.

This centre have been promoting “Lets talk about Cancer” and “Say NO to Cancer” for many years and it is how I originally met them. But like most organizations they are self funded.

The truth is living with lymphomas and CLL can be hard and affects how people are feeling. According to the most recent Global Patient Survey on Lymphomas & CLL (2024), two-thirds of people diagnosed with lymphoma (67%) said in the past six months, they had experienced emotional effects related to lymphoma including:

• Fear of cancer relapse or progression: 46%
• Anxiety: 35%
• Depression: 27%
• Isolation: 20%

People diagnosed with lymphomas and CLL are not talking to medical teams about how they are feeling, according to the Global Patient Survey (2024):

• 30% of people experiencing depression didn’t speak to their doctor
• 28% of people experiencing anxiety didn’t speak to their doctor
• 27% of people with fear of recurrence and fear of progression didn’t speak to their doctor

The Global Patient Survey (2024) also showed that most caregivers (91%) had experienced emotional effects in the past 6 months related to their loved one’s lymphoma.

Some very interesting facts raised here and I can relate to them so I definitely fall inside the 67% .

• Fear of cancer relapse or progression: 46% If it returns I will battle it again
• Anxiety: 35%  Unfortunately yes but this would be more due to employment issues
• Depression: 27% Unfortunately yes but this would be more due to employment issues
• Isolation: 20% With Cancer you find out who your real friends are

The fear of cancer relapse or progression is something that I feel would lead to anxiety and depression. I would be interested to see if a survey was carried out again would they consider digging deeper in to see if the anxiety and depression are related to the fear of relapse or other factors.

Isolation: That’s an interesting one as we all have long experiences of this during COVID lockdown and the lockdown itself has created a massive level of Anxiety and depression. I originally felt that Anita and myself were okay during lockdown, really because we were isolated in 2017 following my Stem Cell Transplant

• 30% of people experiencing depression didn’t speak to their doctor
• 28% of people experiencing anxiety didn’t speak to their doctor
• 27% of people with fear of recurrence and fear of progression didn’t speak to their doctor

I spoke to both my GP and oncologist about these and I continue to encourage people to do the same. But the medical team agreed that it was more anxiety and depression due to work and not so much directly with my remission I have very regular blood tests and if anything looks like an issue my oncologist would not hesitate to investigate generally with CT Scans. But with nearly 7 years in remission  

Centers like The Cork Cancer Care Centre are fantastic for helping patient’s recovery by offering specialized care and open discussion meetings. There are many centers throughout Ireland at a local level offering support but they need funding to stay in operation. This is one of the big steps that governments need to look at, funding local support organizations would have a positive effect on our already stretched medical service. I really need to look into all of this closer and intend to create another article specifically aimed at suggestions and solutions about outreach centers, it is the way forward.  It also falls in line with many comments I have made over the years about open talks and discussions about Cancer. Awareness is vital; I created this site to get my own story out to Lymphoma and Cancer victims and over the past 10 years this site has reached over 45,000 views and this article is post 118 – the first post was released in Feb 2014 but only really started explaining and detailing my approach and treatment in April 2017 when I relapsed. Its promotes Awareness, The need to talk about Cancer openly and together we are stronger, I also need to establish exactly how I can contribute to The Lymphoma Coalition as a patient advocate CAB and I will include this in my next article.  

I have read so many articles written by cancer survivors about their experience following treatment and how they struggle like we do financially. The vast majority of these articles shows the frustration of been unable to secure work. It’s not that they can’t work or don’t want to work but more like me – someone who can run a company. If we are not able to do the job in real terms we wouldn’t apply.

Whats the point in raising these concerns or highlighting them without solutions. There are a number of solutions but the majority need government intervention. These interventions could be achieved by offering employers tax reductions for employing cancer survivors. And governments should create a funding system to support survivors financially . Global financial impact on countries where their citizens have been diagnosed with cancer is now in advanced research – but some factors remain hidden, like the cost to the victims. Without employment we have to rely on government support such as invalidity payments or long term illness benefits.   

Just a quick reference back to The Lymphoma Coalition some of their initiatives can be found on this link https://lymphomacoalition.org/lymphoma-coalition-research/ and their Patient Charter which needs to be fully integrated worldwide. LLC are the next level of support for Lymphoma patients, and what a great organisation. They have strong links with EHA (The European Haematology Association) AND WHO (The World Health organisation).

Barriers in access to oncology drugs — a global crisis

Why ? Cancer does not decimate, race, religion age it affects all of us. I can understand that FDA and EDA approval is necessary and drug testing must be controlled but beyond that there should be no boarders or barriers in anyone’s way to access life saving treatment. We have all read articles about governments not been able to afford introducing cancer drugs into their national health service due to costs…. This needs to change rapidly. The private health services in some countries have also refused to cover patients undergoing some expensive procedures. There should never be any question over this, in simple terms “find the money” to help victims.   “A substantial minority of Americans have religious beliefs against one or more medical treatments. Some groups promote exclusive reliance on prayer and ritual for healing nearly all diseases.” Again WHY? Prayer alone will not cure cancer, sorry if I am upsetting people with this comment but the only real known cure for cancer is medical intervention. I am not just picking on Americans for this but the vast majority of studies into these barriers have been conducted by US Universities .

On occasions over the past number of years when I mention “Stem Cell transplant” a lot of people have remarked that they thought stem cell treatment was prohibited. The confusion rests in what they are confusing SCT with this is not about changing or directly manipulating stem cells it is about helping the body generate stem cells.

CARS-T cell trials is now recognized as the next step towards cancer treatment. This was an option open to my own medical team 10 years ago but SCT was more advanced and available in Ireland. Clinical trials in CARS-T cell is now very advanced and the results are stunning.

CARS-T cell research is based on a form of  immunotherapy,  

Immunotherapy

Description

Immunotherapy or biological therapy is the treatment of disease by activating or suppressing the immune system. Immunotherapies designed to elicit or amplify an immune response are classified as activation immunotherapies, while immunotherapies that reduce or suppress are classified as suppression immunotherapies. Wikipedia

The IVIG that I have received over the past 2 years is part of the studies of how medical science can transform and strengthen our immune system to fight cancer. Cars t cell is the next level and involves the manipulation of cells to help find and kill cancer cells. therapies that enlist and strengthen the power of a patient’s immune system to attack tumors—has rapidly become what many call the “fifth pillar” of cancer treatment. That’s because immune system–boosting drugs have shown the ability to shrink, and even eradicate, tumors in some people with advanced cancer. CARS T Cell is rapidly becoming the First Pillar of cancer treatment and researchers believe that this treatment will become the first line treatment in years to come.

“Making a CAR T Cell”

A growing number of CAR T-cell therapies are being developed and tested in clinical studies. Although there are important differences between each specific therapy that can affect how they function in patients, they all share similar components. Each CAR bridges the cell membrane. Part of the receptor is located outside the cell and part within the cell. The part of the CAR that extends out from the cell’s surface is usually composed of fragments, or domains, of lab-made antibodies. Which domains are used affects how well the receptor recognizes or binds to the antigen on tumor cells. The internal part of each CAR has signaling and “co-stimulatory” domains. These transmit signals into the cell after the receptor interacts with an antigen. The different domains that are used can affect the cells’ overall function.” Extract from National Cancer Institute The National Cancer Institute (NCI) is the American federal government’s principal agency for cancer research and training.

I am still studying CARS T Cell and would prefer to write about this when I feel I can approach the treatment with a clear understanding of the treatment.  

Battlefield terminology My use of battlefield terminology has had various reactions, some see it as fitting while others tend to object. And just to clarify why I use battlefield terminology – first I will define the words Battlefield a place where a battle is fought and/or an area of conflict. Terminology is the body of terms used with a particular technical application in a subject of study, profession, etc

My view is that cancer is the enemy and my body is the battlefield, the use of war terms is easy to relay darning descriptions of approaching my war against cancer. I remember saying to my oncologist “consider me to be the weapon and your drugs are the ammunition and together we will destroy this cancer” and we did.  

WHO estimate that by 2050 some 35 million cancer cases are predicted. 2022 studies showed that there were 22 million new cases with 9.7 million deaths.

But as a cancer victim I find it soul destroying to watch the news, worldwide conflicts rage with thousands of deaths and billions spent. Yes it’s the money that really seems to be shown more and more, billions spent on weapons to kill people, where in my view the money should be spent on saving people. We fear World War 3 but in my mind we are already engaged in WW3, and have been since 3000bc. The Edwin Smith Papyrus is an ancient Egyptian medical text, named after Edwin Smith who bought it in 1862, and the oldest known surgical treatise on trauma. This document, which may have been a manual of military surgery, describes 48 cases of injuries, fractures, wounds, dislocations and tumors It dates to Dynasties 16 -17 of the Second Intermediate Period in ancient Egypt, c. 1600 BCE  The papyrus is unique among the four principal medical papyri that survive today. While other papyri, such as the Ebers Papyrus and London Medical Papyrus, are medical texts based in magic, the Edwin Smith Papyrus presents a rational and scientific approach to medicine in ancient Egypt, in which medicine and magic do not conflict. Magic would be more prevalent had the cases of illness been mysterious, such as internal disease. The first real medical reference to Cancer. With an average of  nearly 10 million deaths every year this is a war that needs billions to battle. Many years ago WHO indicated that 1 in every 3 people would be effected by cancer but this seems small now, as so many people that I know have been diagnosed and when I talk to people it now seems to affect everyone – There was a time that cancer felt rare whereas now its more about rare forms of cancer. Using advanced technology like CARS T cell, immunotherapy and Stem Cell transplants is now within our arsenal of weapons that can finally destroy cancer with less impact and causalities to the warriors fighting this war,   

Gofundme and Etsy Shop

I am also announcing the closure of our only fundraiser on gofundme as it has failed to raise the necessary funds to sustain both this blog site and the hlai website. I might be able to finance them myself for the coming year. The campaign will end in September. Our Etsy shop will close October 1 2024 and currently we are selling the remaining stock at half price…

Two articles to follow

The Lymphoma Coalition

CARS-T Cell

Disclaimer: I am not a licensed medical professional. The information in these articles are based on my personal experience and research, and it’s not meant to be a replacement for professional medical advice. Always consult with a qualified healthcare provider before making any changes to your lifestyle, especially if you have any pre-existing medical conditions. The site is about Awareness to Lymphoma and explores my own medical, mental and physical approach to therapy and continues into Living with Cancer.

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