My Lymphoma story began in late September 2007 when I was going about my normal activities and noticed a large lump just above my collar bone. It seemed to have just come up out of the blue. It wasn't sore! but it did scare me a whole lot. At the time I was working for a group of chiropractors and was regularly having a treatment from them and they had not noticed anything. So I told myself that cancer doesn't just appear out of the blue like this so I would be fine.
I immediately rang my GP and he sent me off for an ultrasound. Of course I was pretty nervous especially when the technician I had, left and brought back someone more experienced who then left and brought back someone else. Not being told anything was pretty difficult. Several days later I saw my GP for the results and he told me that my lymph nodes were very enlarged and that a needle biopsy was required.
I had the needle biopsy and then a further appointment with my GP for the results which indicated that there was no cancer and the lymph nodes were full of re-active cells, probably due to a virus. However, because they were so enlarged I was referred to a specialist surgeon for cosmetic reasons.
Five weeks later I found myself in the most unexpected situation. I was sitting in the consulting room of Peter Gregory to whom I had been referred and hearing the words Hodgkin Lymphoma. I was stunned. I had been told there wasn't a cancer from the needle biopsy. Not so… a needle biopsy would tell me if I had stomach cancer but not Lymphoma.
I sat in my car and cried on the phone to my husband, Colin. How could this be? I was sort of prepared earlier but had been so re-assured that I wasn't prepared for this at all.
Telling my four children was awful. They all have their own families and out of home, but we are a very close family and this was so hard to face.
Blood tests were needed a CT scan and a surgical biopsy scheduled for later that week. I was admitted to Cabrini Brighton Hospital and the next thing I was aware of was that I was in Cabrini Malvern in intensive care. I had had a huge anaphylactic reaction to one of the anaesthetic agents and had died on the table. It took the medical team over an hour to revive and stabilise me. Then the anaesthetist, Rod Tayler accompanied me by ambulance to the Malvern Hospital and in to ICU. My family were all called to come to the hospital because no-one was sure of what the outcome would be. I was on full life support. The surgical biopsy had been aborted.
Fortunately I made it through that hic-cup and my family survived that drama. I still had to undergo the surgery a few days later which was terrifying for me with the knowledge of what had already happened a few days earlier. However everything went well with a specialist anaesthetist in charge.
I had already been told that the CT scan and the blood tests did indicate the likelihood of a positive for Lymphoma. Yet, I hoped that the nodal biopsy would prove otherwise. Not to be. I was officially diagnosed with Follicular Lymphoma.
By this time I had been dealing with so many things both emotionally and mentally that I just felt empty. I had nearly died but didn't and now I have cancer and could die again. This was impossible for me to process and so I just existed in a ser-real state.
The next step was to see an Oncologist. As I walked through Cabrini Malvern from the car park to the consulting suites I seemed to see signs for Oncology all over the place. Each time was like an electric shock going through me. My senses to cancer were so heightened that when I sat in the waiting room and looked around at the other patients my thoughts were total denial. I don't belong here with these people. These people who look so gaunt and drained and sick. I didn't feel sick. I'm not one of them. It didn't take long for me to fit right in.
When I met with Assoc. Professor Gary Richardson he felt fairly confident that the lymphoma was not just in my neck and I needed further tests. A PET scan and a bone marrow biopsy. More tests, more waiting. That was the hardest part at that stage. The waiting. And the need to report back to loving family members. It was exhausting. So we decided as a family to nominate one person to whom I would relate where I was at and that person would contact other members.
Early December 2007 I was finally told that I had Stage 3 Follicular Lymphoma which needed to be treated by a 12 week course of CHOP plus weekly Mabthera. By then I had become a lot stronger mentally and basically said, bring it on!
Two days later I was meeting with the head nurse of Oncology in Cabrini Brighton, which was to become a very familiar place for me. I was given all the information regarding the drugs I would be given. I was sent back to Cabrini Malvern for a PICC line to be inserted as my veins are terrible.
And so my journey with the treatment for my lymphoma began. My Oncologist, Gary has been and still is an amazing person to have in charge of my treatment. So positive and he instilled in me a real feeling of trust. The Oncology staff at Cabrini Brighton are fantastic people. So very friendly and happy and bright. For me they normalised my treatment and that helped me so much.
Throughout my treatment my family supported me 100%. I could never have coped without their help. Meals were made, household things like cleaning and ironing and shopping were all taken care of. Friends sent me a card every week to help count down the 12 weeks of treatment. Others left special gifts on the doorstep. Many prayers were also said on my behalf. I felt the outpouring of love for me in such a way that every day I knew I could do this. I could manage the nausea and extreme tiredness and not being able to eat anything but ice poles and fruit salad.
Late January 2008 I had a set-back. I had started feeling more unwell and over a day and a half got increasingly sicker to the point where I was sent to Cabrini Malvern and admitted for septicaemia. I had what seemed like a boil come up on the back of my neck at the time I started getting sick. It was very, very painful. It appears that something had gotten in through a hair follicle in my neck and set of blood poisoning. I had no white cell count at all and needed blood transfusions and massive doses of anti-biotics. After two weeks I was finally able to come home from hospital.
I had survived another bullet! Chemotherapy started again late February. I also had to go for a CT scan and PET scan. I still had 5 weeks to go! It was harder to go back to the treatment after having had a break from it. However in mid-March 2008 I was having a shower in the bathroom at the hospital after an overnight stay and my Oncologist, Gary Richardson called me through the bathroom door… my tests showed that the cancer was gone… the treatment was successful!!!!! The best news to get and I wanted to run out and hug him… ..but not appropriate when one is not quite dressed.
I finished my 5 weeks. As the treatment came to an end it was harder to deal with the side effects and the horribleness of it all. It was harder emotionally and mentally. I found myself crying easily at everything. But once I had my last chemo it was just the best feeling. Joy and happiness and more than anything gratitude. Gratitude for all the wonderful medical staff who helped me through everything that I had faced in the last 6 months. Doctors and nurses alike worked hard to help me recover and that means the world to me.
I am on the maintenance program for Mabthera every eight weeks. So I am still being carefully watched with blood tests and scans, but I have been officially in remission now since April 2008.
I could never have coped on this journey without the wonderful support and help of my family, my Church community and a very loving Heavenly Father.
I have dodged 3 bullets ( my daughter-in-laws terminology), an anaphylactic shock, blood poisoning and cancer. So each day is a wonderful blessing for me which I treasure. As I approach my 60th birthday where once I would have been un-happy and a little bit worried at getting older, now I know how lucky I am that I am getting older.
Like any of us I don't know what the future holds for me with regards to my NHL. I can only take one day at a time. I can only live each day in gratitude and appreciation.
Anna Blyth (September 2009)
