I was diagnosed with non hodgkins lymphoma towards the end of January after I went to my GP about a lump in my groin.
The lump had been there since November and was growing quite big. Initially my GP ordered an ultrasound and it seemed like they thought it was an infection but I wasn’t sick. Then over Christmas I got the chills and night sweats and my sense of taste changed. I was weak and unwell. I thought it was COVID. I recovered from the chills but was still having night sweats.
I went back to work in mid January and tried to see my GP again. He was on holidays so I saw a new doctor in the practice. She was onto it straight away especially when I told her that I had asthma like symptoms but my preventive puffer wasn’t really working. She ordered numerous tests which confirmed my lymphoma diagnosis and she referred me to Genises Care to see a haematologist. More tests were ordered to determine sub type.
I was diagnosed with stage 3 DLBCL.
Whilst waiting for my chemo treatment to start based on test results, my leg swelled up like a balloon as the lump was clearing blocking blood supply. I was really sick and scared. I called Genises Care and they saw me immediately. I was started on steroid medication and other Allipurinol and blood thinning medication. Tests confirmed that there were no clots and my heart was in good working order.
I was fast tracked to Chemo 6 cycles plus two tops ups of targeted therapy. I was offered the chance to go on clinical trials across the city but there was no guarantee that I would get onto the trial and the risk around blood clotting was too high to wait so I decided to go with the standard treatment which started on 1 February.
My treatment involves 3 days of infusions involving many chemo drugs. This is supported by 5 days of steroid medication and others to protect kidneys, bacterial pneumonia and shingles. After cycle 2 I came out in an almighty rash which was an allergic reaction to the antibiotic and Allipurinol. They were discontinued and the antibiotic was replaced by another drug provided by infusion once a month. I hated it and my breathing was impacted and I had a strange feeling of numbness or cold on my face. Symptoms disappeared quickly though. I also discovered that this antibiotic was not covered by Medicare. I was lucky enough to claim it on private health care.
Now for symptoms. I have to say I was pretty lucky even though I had some real rough days. I had one day of diarrhea, nausea and allergic reaction. I had bad reflux but that can be managed. Skin was generally good but I moisturised twice a day and more when I was getting dry patches. I was super sensitive to the sun so I only went outside early morning or late afternoon during the summer. Sunscreen was part of my daily routine. I am cycle 6 now and the fatigue was at its worst in cycle 5. Days 6 to 10 if each cycle were the most difficult for me. But cycle 5 was the worst. I just found out I need a blood transfusion to get me through cycle 6 which explains the worsening fatigue. Dental hygiene is so important and I was hyperfocused on it. Still got the odd mouth ucer which I managed with orabase protective.
I haven’t experienced severe pain or tingling in my hand and legs. I did exercise as much as my body allowed. I did walks with my dog and swam in the salt water ocean pools on good days. Yoga was also really useful to keep legs and hands moving.
I am still in treatment but scans are showing that the treatment is working and I first noticed this in the first cycle. It was like a miracle. The lump in my groin just disappeared and the swelling in my leg went down. I just could not believe it. As with many patients I did lose my hair but not my eyebrows or eyelashes. I just didn’t really care about losing my hair. Survival is my goal.
I have great support from friends and family and I have a child in the last year of school who is coping remarkably well and was my support crew for one of my chemo sessions. I was lucky enough to have a lot of annual leave accrued at work because I have been there a long time. I also got a lovely support kit from Lymphoma Australia and regularly look at the resources available.
I’m still on the journey and fighting this awful disease. My next scan is in May just before my last treatment. That is my story so far.
What advice would you give someone who has recently received a lymphoma/CLL diagnosis?
Get to your GP early. Don’t let them tell you it’s just an infection. Unlike other cancers there is no screening so if you are feeling like you have a flu that is going on forever ask for blood tests and ask to be tested for cancer.
Also dental hygiene will stand you in good stead. Rinsing with salt water and baking soda is really good for keeping mouth ulcers at bay. Oh and drink lots of water. Rest when you feel tired and enjoy the good days and treat yourself to coffee with a friend or a walk in the fresh air.
How has Lymphoma Australia helped you?
The resources and patient packs have been amazing. I tend not to join webinars on relapses as I’m not ready for that. I did find the nurses webinars really useful and they confirmed many things I had been told through Genises Care.
