Being on watch & wait brings many challenges, not the least of which is worrying about whether symptoms that I am experiencing are related to my lymphoma. For many years before diagnosis, I explained “away” various symptoms which individually did not seem worrisome but when you look at them collectively the picture is much clearer.
When I was pregnant, I had lots of skin itching & also suffered night sweats which continued after my son was born. The tiredness, I attributed to being a new mum, who was breastfeeding & having never had a baby before, I assumed that the night sweats were a way of my body getting rid of the excess fluid that I retained. I also developed a big lump in my armpit which my midwife said was most likely a blocked milk duct. When Dan was 15 weeks old & 3 days before Christmas, I suddenly developed huge bruises all over my body & a rash that did not disappear when pressed with a glass. We went to A&E because we were concerned that I had meningitis & were worried about our baby & were absolutely flabbergasted to be told that they thought I might have leukaemia! After a bone marrow biopsy came back negative we were told that it was most likely an idiopathic condition that can happen following a virus (I was extremely run-down) but that I had to remain in hospital until my platelet count started to rise again. I reacted badly to the meds given & developed a meningitis strength headache so spent Dan’s first Christmas Day in hospital.
Over the next 7 years, I was treated as a Haematology Outpatient with the length of time between checks varying from one week to up to 6 months, with one further stay in hospital when my platelets crashed again in 2008. At one clinical check, I picked up a leaflet about lymphoma & was quite surprised to realise that I had every symptom but even then I didn’t join the dots because my bloods weren’t showing anything. It really is that easy to miss things – I’ve struggled with fatigue for years but then again, what full-time working parent doesn’t? I developed a lump in my neck that went up & down in size but since I had glandular fever at 19, was used to my glands enlarging when I got a bit run-down so wasn’t particularly concerned about that.
I lost a stone & a half in 2 weeks when my marriage broke up in February 2010 & found a large lump in my groin which sent me back to my Doctor. In this instance I attributed that symptom (loss of more than 10% of body weight in a short space of time) to the stress of the end of my marriage so wasn’t especially worried initially, however my worries started to build when the lump got bigger & the other symptoms started to mount up. In my first blog, I said that in some respects it was almost a relief to be diagnosed since everything finally started to add up & I felt almost vindicated about the symptoms that I had experienced over the years.
Diagnosis of lymphoma is incredibly challenging because there are so many different types & sub-types, and so many of the symptoms are seemingly unrelated. Unless there is a lump to biopsy & if your bloods are not showing any abnormalities it isn't that easy to diagnose. I would like to see more done to raise awareness of symptoms so that people get themselves checked out sooner - I read somewhere that most lymphomas are diagnosed at Stage 3 or above which puts most into the "treatable but not curable" box. If more could be picked up at Stage 1 with isolated tumours, I like to think that more people could be completely cured.