My journey started with a lump on the right side of my neck it was the first week of August 2022.
Originally my Doctor thought it was a blocked saliva gland and sent me for an ultrasound. Results showed my lymph node was slightly swollen and she attributed it to fighting an infection. It was not sore however the swelling grew at an alarming rate and after an appointment with my periodontist 2 weeks after detection of the lump – he sent me for a 3D scan to see if I had an infection beneath my gums or with my teeth.
When the scan ruled out that there was no teeth or sinus infection to be causing the swelling my periodontist who stressed not to wait and to investigate further, referred to me a specialist. I was able to see my ENT the next day who really did not like what he saw on my tonsil and booked me for a biopsy 3 days later. The result from the biopsy was ambiguous.
My ENT being extremely thorough, did not send me home with a dose of steroids but referred me to Head & Neck Cancer specialist at St Vincent’s hospital.
It was all quite a whirlwind from there – within 3 days I was booked for PET scans, blood tests etc and appointment with the Specialist where he advised I definitely had some form of cancer, either Lymphoma or HPV – the positive was that the PET scan did not show any spreading and my blood tests were “good”.
A core biopsy on my neck confirmed the results one week later of Hodgkin’s lymphoma.
A week after that I was booked for a neck dissection removing the lymph node. A week later I was meeting with the haematologist at the Kinghorn Centre discussing chemotherapy. Another round of tests, blood, lung stress and heart stress tests and I was ready to start chemo.
I found Lymphoma Australia website was extremely helpful here, I was able to read and found the information on the site was informative. I avoided scouring the internet and just focused on slowly digesting all the information on the website here.
I was really pleased when I received my little care package as it was a lovely gesture and all the products where helpful as my various symptoms eventuated with my treatment.
On 1 November 2022 I had my first chemo – a four-month journey, every fortnight with ABVD (doxorubicin, bleomycin, vinblastine, and dacarbazine on day 1 and day 15 of each cycle).
I was determined that cancer would not beat me, and I tried to be positive. I was very lucky in that I had supportive family, friends, and workplace. I was able to work from home and had flexibility in the hours that I worked which alleviated a lot of the stress re: finances.
Side effects…
Side effects were mild especially in the beginning. The most confronting thing was losing my hair after my second treatment – I think at that stage it really dawned on me that I had cancer. I was devastated and even now I hate my hairstyle (vanity!!). I suffered from reflux so then started medication to alleviate that. Prednisone was part of the treatment on the week of Chemo and it was making me very erratic, I was unable to sleep – so then started with sleeping tablets to help with that, then the following week I would come crashing down and was very emotional. This was challenging as I would find myself crying uncontrollably and my daughters would start to worry. I found dealing with all the medication I was on difficult as I really did not like even taking Panadol for headaches before this. I suffered from mouth ulcers at one stage. I suffered from itchy eyes at another stage and felt like tearing my eyes out. I was exhausted emotionally and physically but determined to walk every day – drinking copious amounts of water trying to flush my system. I started to really watch what I was eating and trying to be healthy, a lot of veggies and fruits. I was lucky that I did not lose any weight either (although I could have done with some of that as I am a little overweight).
My veins were struggling and trying to find one for the catheter was getting difficult. Trying to be positive was exhausting. It was summer and time to get out and about but COVID was a big worry and so I had to be careful. I limited my activities, but I was determined not to wrap myself in a bubble. I found that was also very depressing as I am generally a very upbeat person and love to be out, so no summer festivals or markets for me!
My mid-way PET scan had showed improvement (but there was some shading on my left tonsil now showing) so I was worried about that.
Finally, my chemo treatment was over, 27 February 2023. Four months of hell. My PET scan 3 weeks after the end of treatment showed no trace of cancer – hallelujah!
However, there was still some shading showing on my left tonsil, so no celebration yet. Another 3 weeks and another PET scan was still showing shading, therefore my ENT decided to proceed with a tonsillectomy.
20 June 2023, my haematologist advised the ALL CLEAR – the results were negative for any cancer, just an over-reactive tonsil. It was 11 months since I had detected the lump.
My friends and family organised a surprise party – this was the most beautiful and touching moment and I am so grateful that I had my daughters, sisters and such wonderful friends that provided me an amazing support system.
Now my journey to recovery started. Aches and pains, exhaustion but I booked my holiday to the Greek Islands, my mantra through this journey that I would be on Paros Island celebrating my twin girls 20th Birthday with them on the 10 July and I made it there!! Sun, sea, swimming and walking. I am back and now working on my recovery and health. I still tire easily, still have aches and pains and a bit of an itch happening, so another PET scan this week and waiting for results. Trying not to stress about that.
Cancer is a life sentence but I am determined it will not beat me!
What advice would you give someone who has recently received a lymphoma/CLL diagnosis? Is there anything you wish you had known before your treatment or things that helped you along the way you want to share?
Take each day as it comes and get yourself the deck of My Little Bag of Sweary Affirmations (this helped my humour and my positive energy! Try not to look at too much information especially if it is not related to your type of lymphoma.
How has Lymphoma Australia helped you in your lymphoma cancer journey? eg. through resources, attending webinars, patient packs, online support groups, Facebook groups, connecting with nurses, help to access trials etc.
The information on the website was very informative, the pack of goodies received was fabulous. belong to the Facebook group Lymphoma Down Under really helped as I learnt so much about what other people where experiencing and so many times I could identify and so that helped to know I was not alone.
Thank you Clare for sharing your lymphoma story with us. We wish you continued good health!
