I was diagnosed with chronic lymphocytic leukaemia (CLL) in 2005 at the age of 42. My dad was also ill at the same time, so I put my tiredness down to looking after him and working full time.
It was just before Christmas 2004 when it began. I had a sore throat, and it was that bad that I had no voice on Christmas Eve. However, as it would have been busy at work, I went in anyway and did what I could.
The Christmas break saw no improvement, so on the 27th of December I made an appointment to go see my GP after work. He thought it was tonsillitis, so gave me antibiotics and signed me off work for a week. However, at the end of the week, I was no better. I went back and was signed off again with different antibiotics.
I was tired, weak and my throat was sore, and I was still looking after my Dad. Another week passed and there was no improvement, so I went back to the doctors, who suggested I had quinsy and sent off a sputum sample. I returned to work, although still feeling rough, but at least I had had some rest. Yet the result came back negative for quinsy and glandular fever, so they decided I should have a blood test.
A few days later, Dad tried to phone me at work but had to leave a message with a colleague. As he was very poorly by this time, the message wasn’t too clear, so I phoned him to check what it was. He said I had to phone the surgery as soon as possible.
The receptionist made me an appointment for just after lunch. At the appointment, I was told that my white cell count was higher than it should be and that I needed to be referred to a haematologist, who could look into the matter further.
I was relieved, thinking, ‘At least I may get some antibiotics that will actually help me’, and thought nothing more about it. I was still tired, achy and had started to sweat more than usual, but again I put that down to looking after Dad and being stressed about him.
The appointment came around quickly. I thought that odd, considering usual waiting times, but brushed it off. I had more blood tests and the haematologist said she wanted to take a bone marrow sample the next day. I was in cloud cuckoo land and just went along with everything as I was used to dealing with nurses and doctors for Dad.
Meantime, I had also been seen by ENT regarding the swollen tonsils and they had decided that they had to come out, as all I could eat for breakfast, lunch and tea was Weetabix.
I had the bone marrow sample taken. It wasn’t pleasant but it was bearable. She showed me the slide and said that she was 90% positive I had leukaemia and left the room, leaving me half dressed – one leg in my trousers and one still out and with no shoes – with a male nurse. I didn’t mind so much about the male nurse as he had been so sweet during the procedure, but to simply say that and walk off was a bit of a shock. I had gone up there on my own as the neighbour who was going to take me had broken her wrist the day before, and of course Dad was too weak to drive. The nurse tried to make sure I was okay, but I was so in shock that I wasn’t really functioning. All I remember was leaving the hospital, catching the bus and going home, not back to work.
I phoned work and spoke to my top manager rather than my line manager (the latter hadn’t been very helpful during this period, even denying me half a day off to go to the doctors with my dad). The top manager told me to take the rest of the week off, which was just as well as I was bruising from lower back to ankle and beyond.
I had a date for the removal of my tonsils in March and my line manager asked me if it could be delayed as I was needed at work. I said no, as guided by my GP. It was arranged for Dad to go into a local hospice whilst I was having the operation and recuperating, but a couple of days before the operation he fell out of bed, so was in hospital himself.
I went in on the day of my surgery – it was an emergency surgery so I was to be taken down late evening. I went to see Dad, who was to be transferred to the hospice during the morning, waved him off and went up to my ward. I had the tonsils removed and was told by the surgeon that they were the largest he had ever seen and that they had been sent for a biopsy.
As it was gone 11pm before I got back to the ward, I had to stay in rather than be a day patient as I’d thought, and the next day I was in so much pain that they wanted to keep me in another day. That night, my dad died, and rather than send me home to an empty house I stayed in three more days.
I had to arrange a funeral with no voice and whilst recovering from the operation. Seven days after having the op, I returned for the post-op appointment to be told by ENT that I did have leukaemia and that my tonsils were full of dead white blood cells.
The funeral had passed before I had an appointment with the haematologist and she was not nice at all to me. I had tried to ask a few questions and all she could say was that I was in a better position than many she saw as I had CLL and was on Watch and Wait. I hadn’t a clue what that was all about and she wouldn’t explain. I was rushed out of the appointment and left to fend for myself.
A friend in Australia, who was an Ambulance Officer, looked up some information for me and gave me the website details of Leukaemia CARE. I contacted them and was sent a booklet to read about CLL. Finally, I had a friendly voice who I could talk to and ask the questions to. They suggested I ask my GP if I could see an alternative consultant and this was arranged for me.
To cut a long story a little shorter, my new consultant was lovely and he reassured me. I did try to go back to work, but my line manager continued to be very unhelpful. In July, I had a total breakdown, and 18 months later I was retired from work due to ill health.
I do have other health issues now, but we are not sure if they are linked, and I am undergoing further tests. I have learnt to listen to my body. When I am tired, I rest; when I think I have an infection, I phone the surgery and get an appointment for antibiotics.
Before my illness, I was an avid traveller and had been to all the continents, including Antarctica. I thought I’d never be able to travel, but thanks to Saga I can get “standard” insurance, so have been to Tenerife and Gran Canaria.
I am glad to say that the first consultant is no longer working face-to-face with patients. I can only thank Leukaemia CARE for their help in changing consultants to one I could trust.
I would add that following the death of my dad and my diagnosis, I was in need of a gardener to tackle the jungle that had grown. He started working for me in 2005 and a friendship blossomed that in turn became more. In December 2014, we were married, had a penguin themed wedding (my favourite animal) and raised funds via a collection box on the day for the charity as a thank you. Despite all that happened, something good came from it.