Musgrave Triathlon for Lymphoma
Donation protected
As many of you will know my brother in Law, Richard Moore was Diagnosed with Non Hodgkin's, Mantle Cell Lymphoma in February 2015, whilst training for the London Marathon at the age of 45. He was treated with 6 rounds of Chemo-therapy and was fortunate to receive a stem cell transplant all before 2015 was over. He now has a second chance at life which would not have been possible just a few short years ago.
For myself I hoped that this would be the first and last time I heard the word Lymphoma, but this was not the case. Earlier this year one of our members of staff, Hayley Johnson was also diagnosed at the age of 23 and this is her story....
My name is Hayley Johnson, I am a 23 year old, mother of one, and in April this year I was diagnosed with a rare form of HodgkinsLymphoma – Cancer of the lymphnodes.
This rollercoaster I’m on began back in October/November 2017 when I noticed a lump just under my jawline on the right side of my neck. I thought this might have just been a swollen gland as I’m normally well and never usually sick. After much persuasion from friends and family I finally went to my GP in December as the lump hadn’t gone away. My doctor felt the lump and said she didn’t think it was anything to worry about but she would refer me to be seen by an ENT (ear, nose and throat specialist), just to be sure. She also referred me to have an ultrasound done to get a better understanding of what the lump was. I also had a blood test done on the same day and got the results just before Christmas to say my bloods were all clear, sure enough this really put me at ease and I was able to enjoy Christmas without worrying, too much. January passed with no sign of any appointments. I jetted off to Thailand for the first three weeks of February with one of my friends. Needless to say it was the holiday of a lifetime. One night in Thailand I turned to my friend and told her how worried I am about the lump and what it might be. She reassured me it couldn’t be anything too serious, with that we enjoyed the rest of the holiday and I didn’t think any more of it.
Two days after I came home from Thailand I had the ultrasound done on my neck. The result of the ultrasound came back that the lump was reactive, meaning it got bigger and smaller in an attempt to fight infection. I found this strange as I knew myself the lump never got smaller. It got slightly bigger and then just stayed the same, it never fluctuated.On the 12th of March 2018 I had my first appointment with the ENT in Tullamore hospital. He felt the lump and even though the ultrasound results said it was reactive, he didn’t think so. He put a camera down my throat to check my voice box and said it was fine. He then referred me to have a fine needle aspiration (needle biopsy). I had that done on the 26th of March where they took three samples of tissue from the lump. The hospital rang to confirm they could not get a result from the tissue and told me that therefore they wanted to remove the entire lump to look at the cells as a whole. This was scheduled to take place on the 16th of April. From the moment the word biopsy was mentioned I began to think the worst. So the three week wait to this procedure was tough to say the least as my mind was thinking the worst. The procedure itself was a scary experience. I knew the theatre nurse on duty on the day, she was lovely and helped me to stay calm as I was awake for the procedure. I was left with a few stitches and a small scar but was left playing the waiting game again on getting results.
One week later, Monday the 23rd, the ENTnurse rang me wondering was I free to come in for a chat to talk about my results before my appointment the following day. I got a bad feeling about this and decided I would go and meet with her. I went in to talk to her in the outpatients department in Tullamore; it was very quiet as the day care patients had all gone home, the eerie feeling in the halls when I was waiting for the nurse just added to my nerves. I was called into the room where I met the ENT nurse specialist. My friend was with me and the nurse asked me did I want her to come into the room with me but I said no as I was trying to be brave and not think the worst. The nurse sat me down and in a very shaky voice she told me that the result they got from the biopsy was Hodgkins Lymphoma. Those words meant nothing to me as I had never heard of it before. The next few words out of her mouth are what I did not want to hear. “It’s cancer in your lymph nodes”. She barely had the words out of her mouth and I just started to cry. She then called down another doctor to talk to me and inform me a bit more about Hodgkins Lymphoma. To be honest I cannot remember one word they said to me. I was just in shock. They told me I was booked in for an appointment in Oncology the following morning and that I was then finished with the ENT department. I went out to my friend in the waiting room to tell her, she knew it wasn’t good news and it took me a few minutes to gather myself to tell her “it’s cancer”. Not much was said between us in them few moments or for the whole car journey home. At 23 years of age I had to come home and tell my parents that I have cancer. That evening we told all the family and my close friends.
The next morning, Tuesday the 24th of April was my appointment in the Oncology/Haematology unit in Tullamore. My ma came with me to this appointment. We met with one of the oncology doctors and she told us about some tests I was going to have to determine if it was definitely cancer; exactly what sub type and what stage it is at.
She threw a lot of information at me that I found it hard to take it all in. She only spoke briefly about Hodgkins Lymphoma and how it is treated because we were still awaiting the final diagnosis from St James, hospital where my lymphnode was sent for a final investigation by the pathologist there. She mentioned having a fertility treatment also because I am a young woman and chemotherapy, if needed, can sometimes damage fertility.
Exactly one week later on the 1st of May, it was confirmed by phone call that it was in fact Hodgkins Lymphoma. I was now awaiting an appointment for scan known as a PET CT. This scan would determine if there was any more cancer in my body and where. I also had to have a test done on my heart and lungs to make sure there was no existing problems before starting treatment that may worsen.
Friday the 4th of May I had the scan in St.James Hospital Dublin. It was almost an hour long scan that consisted of having an injection that would light up any affected areas in my body. It was twelve days later, on the 16th of May that I was told the results of the scan. Stage 3, Nodular Lymphocyte Predominant Hodgkins Lymphoma – a subtype of Hodgkins Lymphoma.
The following week I met with a nurse in the oncology unit of Tullamore for my education talk. She talked me through the type of cancer I have and the type of treatment I would receive. She told me I would need 6 months of ABVD (each letter stands for a drug) chemotherapy which is the typical treatment for my type of cancer. She showed me around the day ward, where there were people in having treatment and that is the moment it all felt real to me. Up until that point I kind of felt like they had made a mistake.
On the 30th of May, I had my first chemotherapy session. It was a long day and luckily I only suffered minor side effects from it. I have chemo every 2 weeks in Tullamore. I don’t mind spending the day in there once I have plenty of snacks to keep me going. That brings me to today, the 1st of August, three months on and almost halfway through my treatment. Since starting my treatment I have found that I get short of breath more easily, my arms and hands hurt at the site of injection and my digestive system doesn’t really know what’s going on, tiredness was always an issue for me so I can’t even blame chemotherapy for that. The nurse told me I would lose all the hair on my body as a side effect of the chemo I would receive, so I got my hair cut from 2 inches passed my shoulder, into a short pixie hairstyle, in an attempt to cope better with it falling out. My hair started to fall out very slowly after the first treatment and then more and more as the weeks went on so I just got it shaved tight to my head. Most of it is still there because it must be as stubborn as me, but I have a few bald patches here and there.
The past few weeks have been an absolute rollercoaster for not only me but my family and friends too. Between coming to appointments with me, sending me positive messages of support, helping with my son, I am blessed to have all the people I have with me on this mad journey to get better. Overall I am well and hope it stays that way for the rest of my treatment.
Hayley J
x
This is what gave me the push to actually do something and try help others. Every year the triathlon notice arrives in the post and goes in the bin but this time I said let’s go for it and do it for Lymphoma on the 25th August. When Richard was diagnosed I saw first hand the pain and hurt that Richard, my sister Olga and there 3 young kids went through, so hopefully this will go a long way to helping others.
If you see me head down in the pool, running or cycling the roads don’t be shocked this is the reason why and when I’m thinking about giving up I say, “Richard & Hayley didn’t give up!”, so I keep going.
Please give what you can, every little really does help and I am truly grateful.
Thanks
Deasún.
For myself I hoped that this would be the first and last time I heard the word Lymphoma, but this was not the case. Earlier this year one of our members of staff, Hayley Johnson was also diagnosed at the age of 23 and this is her story....
My name is Hayley Johnson, I am a 23 year old, mother of one, and in April this year I was diagnosed with a rare form of HodgkinsLymphoma – Cancer of the lymphnodes.
This rollercoaster I’m on began back in October/November 2017 when I noticed a lump just under my jawline on the right side of my neck. I thought this might have just been a swollen gland as I’m normally well and never usually sick. After much persuasion from friends and family I finally went to my GP in December as the lump hadn’t gone away. My doctor felt the lump and said she didn’t think it was anything to worry about but she would refer me to be seen by an ENT (ear, nose and throat specialist), just to be sure. She also referred me to have an ultrasound done to get a better understanding of what the lump was. I also had a blood test done on the same day and got the results just before Christmas to say my bloods were all clear, sure enough this really put me at ease and I was able to enjoy Christmas without worrying, too much. January passed with no sign of any appointments. I jetted off to Thailand for the first three weeks of February with one of my friends. Needless to say it was the holiday of a lifetime. One night in Thailand I turned to my friend and told her how worried I am about the lump and what it might be. She reassured me it couldn’t be anything too serious, with that we enjoyed the rest of the holiday and I didn’t think any more of it.
Two days after I came home from Thailand I had the ultrasound done on my neck. The result of the ultrasound came back that the lump was reactive, meaning it got bigger and smaller in an attempt to fight infection. I found this strange as I knew myself the lump never got smaller. It got slightly bigger and then just stayed the same, it never fluctuated.On the 12th of March 2018 I had my first appointment with the ENT in Tullamore hospital. He felt the lump and even though the ultrasound results said it was reactive, he didn’t think so. He put a camera down my throat to check my voice box and said it was fine. He then referred me to have a fine needle aspiration (needle biopsy). I had that done on the 26th of March where they took three samples of tissue from the lump. The hospital rang to confirm they could not get a result from the tissue and told me that therefore they wanted to remove the entire lump to look at the cells as a whole. This was scheduled to take place on the 16th of April. From the moment the word biopsy was mentioned I began to think the worst. So the three week wait to this procedure was tough to say the least as my mind was thinking the worst. The procedure itself was a scary experience. I knew the theatre nurse on duty on the day, she was lovely and helped me to stay calm as I was awake for the procedure. I was left with a few stitches and a small scar but was left playing the waiting game again on getting results.
One week later, Monday the 23rd, the ENTnurse rang me wondering was I free to come in for a chat to talk about my results before my appointment the following day. I got a bad feeling about this and decided I would go and meet with her. I went in to talk to her in the outpatients department in Tullamore; it was very quiet as the day care patients had all gone home, the eerie feeling in the halls when I was waiting for the nurse just added to my nerves. I was called into the room where I met the ENT nurse specialist. My friend was with me and the nurse asked me did I want her to come into the room with me but I said no as I was trying to be brave and not think the worst. The nurse sat me down and in a very shaky voice she told me that the result they got from the biopsy was Hodgkins Lymphoma. Those words meant nothing to me as I had never heard of it before. The next few words out of her mouth are what I did not want to hear. “It’s cancer in your lymph nodes”. She barely had the words out of her mouth and I just started to cry. She then called down another doctor to talk to me and inform me a bit more about Hodgkins Lymphoma. To be honest I cannot remember one word they said to me. I was just in shock. They told me I was booked in for an appointment in Oncology the following morning and that I was then finished with the ENT department. I went out to my friend in the waiting room to tell her, she knew it wasn’t good news and it took me a few minutes to gather myself to tell her “it’s cancer”. Not much was said between us in them few moments or for the whole car journey home. At 23 years of age I had to come home and tell my parents that I have cancer. That evening we told all the family and my close friends.
The next morning, Tuesday the 24th of April was my appointment in the Oncology/Haematology unit in Tullamore. My ma came with me to this appointment. We met with one of the oncology doctors and she told us about some tests I was going to have to determine if it was definitely cancer; exactly what sub type and what stage it is at.
She threw a lot of information at me that I found it hard to take it all in. She only spoke briefly about Hodgkins Lymphoma and how it is treated because we were still awaiting the final diagnosis from St James, hospital where my lymphnode was sent for a final investigation by the pathologist there. She mentioned having a fertility treatment also because I am a young woman and chemotherapy, if needed, can sometimes damage fertility.
Exactly one week later on the 1st of May, it was confirmed by phone call that it was in fact Hodgkins Lymphoma. I was now awaiting an appointment for scan known as a PET CT. This scan would determine if there was any more cancer in my body and where. I also had to have a test done on my heart and lungs to make sure there was no existing problems before starting treatment that may worsen.
Friday the 4th of May I had the scan in St.James Hospital Dublin. It was almost an hour long scan that consisted of having an injection that would light up any affected areas in my body. It was twelve days later, on the 16th of May that I was told the results of the scan. Stage 3, Nodular Lymphocyte Predominant Hodgkins Lymphoma – a subtype of Hodgkins Lymphoma.
The following week I met with a nurse in the oncology unit of Tullamore for my education talk. She talked me through the type of cancer I have and the type of treatment I would receive. She told me I would need 6 months of ABVD (each letter stands for a drug) chemotherapy which is the typical treatment for my type of cancer. She showed me around the day ward, where there were people in having treatment and that is the moment it all felt real to me. Up until that point I kind of felt like they had made a mistake.
On the 30th of May, I had my first chemotherapy session. It was a long day and luckily I only suffered minor side effects from it. I have chemo every 2 weeks in Tullamore. I don’t mind spending the day in there once I have plenty of snacks to keep me going. That brings me to today, the 1st of August, three months on and almost halfway through my treatment. Since starting my treatment I have found that I get short of breath more easily, my arms and hands hurt at the site of injection and my digestive system doesn’t really know what’s going on, tiredness was always an issue for me so I can’t even blame chemotherapy for that. The nurse told me I would lose all the hair on my body as a side effect of the chemo I would receive, so I got my hair cut from 2 inches passed my shoulder, into a short pixie hairstyle, in an attempt to cope better with it falling out. My hair started to fall out very slowly after the first treatment and then more and more as the weeks went on so I just got it shaved tight to my head. Most of it is still there because it must be as stubborn as me, but I have a few bald patches here and there.
The past few weeks have been an absolute rollercoaster for not only me but my family and friends too. Between coming to appointments with me, sending me positive messages of support, helping with my son, I am blessed to have all the people I have with me on this mad journey to get better. Overall I am well and hope it stays that way for the rest of my treatment.
Hayley J
x
This is what gave me the push to actually do something and try help others. Every year the triathlon notice arrives in the post and goes in the bin but this time I said let’s go for it and do it for Lymphoma on the 25th August. When Richard was diagnosed I saw first hand the pain and hurt that Richard, my sister Olga and there 3 young kids went through, so hopefully this will go a long way to helping others.
If you see me head down in the pool, running or cycling the roads don’t be shocked this is the reason why and when I’m thinking about giving up I say, “Richard & Hayley didn’t give up!”, so I keep going.
Please give what you can, every little really does help and I am truly grateful.
Thanks
Deasún.
Organizer
Deasún Baggot
Organizer
