Our next issue of Lymphoma Matters will be out shortly. In it you can read Mary's experience of chemo brain as well as medical opinion on this condition, a clinical trials update and how treatment for diffuse large B-cell lymphoma has developed. As usual the magazine is packed with personal stories, medical updates, fundraising opportunities and information about what is happening in your area.
In the meantime, here's the background to Mary's story...
Six years ago at Christmas 2018 would have marked the end of regular visits to see my haematologist. After being diagnosed with lymphoma in November 2012, I had received treatment and had gradually reduced the time between check ups to just once yearly. To be honest, once the treatment had finished I lived life as though nothing had happened to upset the balance. However, it’s probably best to start at the very beginning.
My original symptoms consisted of nothing more than a small lump on the right side of my neck. Having noticed it just after a throat infection, I put it down to a swollen gland. When it was still there 5-6 weeks later I decided to get it checked out with the doctor.
She first of all told me that it wasn’t a gland but she didn’t seem unduly worried. However, after thinking about it for a few minutes she decided to do a referral to the local hospital ‘just to be on the safe side.’ Thank goodness she did.
The referral from the ear, nose, throat and ‘neck lump’ clinic came through in less than two weeks. I felt a little amused by the appointment letter as ‘neck lump’ was handwritten as an addition to the clinic title. This was obviously a fairly new part of their remit.
When the appointed day came along, I presented myself at a very busy clinic with a number of different waiting areas. I was interviewed by a nurse who took details about my medical history before I was moved along to another area where I was told that a needle biopsy would be taken. Not quite knowing what to expect, I wasn’t unduly worried as I sat and read my book while awaiting my turn.
Eventually, my name was called and I was shown to a small side room where a nurse and a doctor were waiting. Introductions were made and the doctor explained that she was going to insert a needle into to lump to take a sample of tissues and cells so that they could be tested. It was only when the nurse offered to hold my hand that I became wary.
After a short while the results came. ‘Inconclusive.’ As a consequence of this I was scheduled for an ultra sound guided biopsy in a few days’ time.
This was so much more civilised than the needle biopsies. For a start, I was given a local anaesthetic while I lay on the ultrasound table so there was no pain or discomfort involved apart from the first slight scratch of the needle. The image from the scanner was then used to guide the needle into the correct place on the neck so the doctor could take samples. It was all over in 20-30 minutes and I was allowed to go home and await the results.
These arrived about a week after the procedure and simply requested that I attend the consultant’s clinic to discuss the results in a few days’ time. Because I felt okay in myself the thought of it being cancer had not even entered my head, so you can imagine my surprise and shock at the events that followed.
I was introduced to the nurse in attendance and also to a lady introduced as a Macmillan nurse. To be honest, I did wonder what she was doing there. My husband and I were shocked to hear I had cancer. Events seemed to move quickly after that with the Macmillan nurse saying that she would answer our questions.
The hardest part was walking through the crowded waiting area, trying not to cry while she guided us to another side room. We sat down with the poor Macmillan nurse who tried to be as reassuring as she could. She couldn’t give us the answers we wanted and was bright enough to realise that we were in total shock and just needed time to pull ourselves together. I’m still not sure what was said in that room but after a while we left with the nurse’s contact details and the promise of a more detailed explanation to follow.
Within days, a letter arrived with an appointment for a consultant in the Haematology Department. By this time we still weren’t sure what we were dealing with but we had formulated quite a list of questions. Time dragged until the day of the consultation and it was with fear and trepidation that we entered into this hitherto unknown part of the hospital.
Thankfully, the wait to see my new consultant was a short one. He started off by explaining that the results of the biopsy showed I had a particular type of non Hodgkin lymphoma called follicular lymphoma. Further testing would be needed to identify the stage of the lymphoma so that treatment options could be explored. Once scans and a bone marrow biopsy had been taken the doctors would have a clearer picture of what they were dealing with.
Somehow we got through the following weeks of tests and found ourselves once more in the consultant’s office. The cancer was stage 1 and limited to just one group of lymph nodes. I wouldn’t need aggressive treatment, just an operation to remove the affected lymph node and follow-up radiotherapy. It was better than we’d expected so we left the hospital that day feeling that we’d been given a reprieve.
This sense of optimism carried us through the next few weeks of the operation and radiotherapy. It wasn’t all plain sailing. The radiotherapy consisted of 15 sessions spread over 3 weeks. It was tiring visiting the hospital so frequently and my skin developed a red flush and increased sensitivity. I didn’t particularly like wearing the moulded mask which held my body still and allowed the radiographers to line up the machine accurately while the radiotherapy took. To be fair, most of the time in the radiography department was spent in fitting the mask and setting up the machine so that the beams of radiation hit the target. This takes only a few minutes. Afterwards, the mask is unclipped, the table lowered and you are free to go.
Once the last treatment was finished I was given regular follow-up appointments with my consultant. They started at 3-monthly intervals, then 6-monthly intervals and finally yearly intervals. At these appointments I would have blood tests and a physical examination.
I honestly thought I had beaten it until this latest episode. My follicular lymphoma had transformed from a low grade one to a much more aggressive type which in turn needed more aggressive treatment. In hindsight I should have recognised the symptoms; persistent back pain, tiredness, shortness of breath and the occasional night sweat. The good news is that high grade lymphomas tend to respond better to treatment and can often be cured.
So, here’s hoping!
We'll be sharing more of Mary's experience of lymphoma over the next few weeks. You can also read about her experience of chemo brain in the next issue of Lymphoma Matters, which is due out shortly. If you don't already receive our magazine, sign up to receive your free copy.