Wednesday was the day I was to meet my consultant. Had the last appointment of the day so the morning was spent trying to keep busy. All too soon it was 3pm and we were leaving for the hospital. Had my bloods taken before I met my consultant, obviously by an amateur because my arm went blue he was taking so long!
After another bit of waiting I met my consultant. It was explained that I did have lymphoma which is a type of cancer that originates in lymphocytes of the immune system. Lymphoma is cancer of the lymphatic system. The lymphatic system is made up of a series of vessels and glands, known as lymph nodes. These are spread throughout your body, much like your blood vessels. The lymphatic system is part of your immune system. It carries lymph around your body. Lymph is a fluid full of infection-fighting white blood cells known as lymphocytes.
When a person has lymphoma, some of their lymphocytes are 'out of control'. They divide in an abnormal way, or do not die off when they should. These abnormal lymphocytes can collect in the lymph nodes, which then enlarge as the lymphocytes form tumours. Lymphoma can also affect other organs in the body such as the liver, as in my case. The affected lymphocytes begin to lose their infection-fighting properties, making you more vulnerable to infection. The causes of lymphoma are still unknown.
There are two main types of lymphoma:
i) Hodgkin lymphoma - if the Reed-Sternberg cell is seen under the microscope. Hodgkin lymphoma can occur at any age, although most people diagnosed are between the ages of 15 and 35 or 55 and over. Around 1500 people are diagnosed with Hodgkin lymphoma each year in the UK. Hodgkin lymphoma affects more men than women. Hodgkin lymphoma is now very successfully treated, and the majority of people with it will be completely cured.
ii) Non Hodgkin lymphoma - any lymphoma that is not Hodgkin lymphoma. Around 9500 cases of non-Hodgkin lymphoma are diagnosed each year in the UK. It is more common in those aged over 55, and is one of the most common cancers in those aged 75 and over. There are many different types of non-Hodgkin lymphoma. Some types grow very slowly and others grow very quickly.
The pathologist had been unable to identify my type of lymphoma, but he had narrowed it down to two types, one being Hodgkin's and one being non Hodgkin's. Alarm bells then started ringing because I had read that non Hodgkin's lymphoma is less curable. My consultant explained that depending on what type of lymphoma I had, would determine the type of chemotherapy I had.
My consultant explained that whatever type of cancer I have it was fast growing and aggressive due to the masses evident on my scans, which I was allowed to look at. At the bottom of my scans it said suspected grade IV lymphoma, there it was in black and white, grade IV is as high as it goes. He didn't think I had had the cancer all that long, probably dating back to the end of my travelling trip, October/November time. We discussed the severity of the situation, the fact of it being cancer, and with that there are no guarantees but he did say that usually with these fast growing aggressive types they respond well to chemotherapy. Discussed the option of freezing my eggs, but he said that we didn't really have time, he said it was a gamble but if the lymphoma turned out to be Hodgkin's the type of chemo I would be having had a good rate of fertility with it. We also discussed the option of going privately and the next steps.
Had an examination and the doctor noted my extended abdomen which he suspected was because of the liver being full of lymphoma. He looked at my sores and scars on my feet from my itchy skin, which is a symptom of lymphoma and one he said would soon diminish with chemotherapy. Also went through my other symptoms - the night sweats, at around evening time everyday I would become uncomfortable hot and my temperature would rise to very high levels, back pain - which I was know taking pain killers for, me said he would leave me on them for now but want to take me off them, he suspected the back pain was due to my extended liver pressing on nerves, tiredness - another 'normal' symptom of lymphoma.
Came away feeling disappointed that I still didn't know what type of lymphoma I had and would have to wait for these results before I could get my head around what chemo I would be having and with that we still had lots of unanswered questions because many of them related to chemotherapy and the answers are chemo specific. Draining day, physically and emotionally.
It was twenty (minus fifteen) years ago today…
4 months ago