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My youngest son, Andrew, was born by caesarean section on September 6th 2000. It was a traumatic birth. I had haemorrhaged and was given a blood transfusion. Over the next few years, I remember feeling exhausted all the time and had some discomfort from my caesarean scar. I shrugged it off and put it down to being so busy looking after four boys, so I just carried on regardless.
Eventually, I knew something wasn’t right. The tiredness wasn’t easing and my scar was still painful so I decided to visit my GP who referred me to Birmingham Women’s Hospital to get checked out. My GP told me my symptoms were probably due to me being an older mother! After a few appointments and an MRI scan, I was told that the discomfort was likely due to scar tissue after having two caesareans, and I was sent on my way.
By this time it was December 2003. I decided that as I was43 and had four children, I would be sterilised and have a laparoscopy (key hole surgery) done to investigate what was wrong. I had my pre-op appointment and blood tests were taken. Two days before Christmas, I had a call from the hospital telling me that the blood tests had shown that my white cells and platelet counts were low. I was told to be careful that I didn’t cut myself over Christmas, as there could be a problem with the blood clotting. Needless to say, I was absolutely petrified!
An appointment was made for early January 2004 to find out why my blood counts were low. When I was examined, the doctor found that my spleen was enlarged and said that I would need further tests to establish what was wrong. I had CT scans and a bone marrow biopsy, which was rather painful. Months later we were still no further forward with a diagnosis and I was called the ‘mystery lady’ by one of the consultants!
The medical team decided to explore a different route and arranged for another bone marrow biopsy to be done. Finally, in November 2004 I was told that I had hairy cell leukaemia (HCL) which is a type of chronic leukaemia and apparently unusual in someone of my age. I had never heard of hairy cell leukaemia before and whilst I was relieved to receive a diagnosis, I felt a mixture of emotions; confused, upset and then angry. I also had lots of questions; Why me? What had I done to deserve this? I was told that no-one knew why; it wasn’t hereditary and it was just one of those things. If it wasn’t for the routine blood test being carried out ahead of my operation, who knows when I would have found out what was wrong.
One of the hardest things I’ve ever had to do was tell my four sons. As their mother, I was meant to be the strong one and to be the one doing the looking after – not the other way around. Thankfully, I have always had my husband, Martin, by my side to support me.
The way I dealt with my diagnosis was to be armed with information about the condition – the more I knew the better. I wanted to know what to expect and to try and answer some of the questions I had. I found Leukaemia CARE who were so helpful and often sent me information about HCL. At a time when everything seemed so confusing and daunting, this was a great support to me. As far as I was concerned, knowledge was everything and I found I needed to understand my illness so I could cope with the diagnosis a bit better. I subscribed to Leukaemia CARE’s journey magazine and found the patient’s stories so inspirational. It gave me some comfort knowing I wasn’t the only one going through what I was experiencing. Martin and I both give a monthly donation to help support the work they do.
I was booked to go into Birmingham’s Queen Elizabeth Hospital in February 2005 to start my chemotherapy treatment. I had a PICC line inserted and I had decided to have Cladribine as a seven-day continuous treatment cycle. Martin and I felt it would be better for us all as a family to get the treatment over and done with as quickly as possible so we could get back to ‘normal’. In March 2005, my treatment began. I remember feeling nauseous quite a lot so had to take antisickness tablets and I didn’t have much appetite. I found the treatment very invasive as I couldn’t dress myself because the PICC line was attached to a drip. Three days after my treatment began, I was examined. My spleen had started to shrink and that was when I realised there was light at the end of the tunnel. It was working! A low point was when it was Mother’s Day and Martin and the boys came to visit me with cards and presents. I felt so guilty that I wasn’t at home with them. I felt helpless.
After my treatment stopped, I developed a high temperature. I had an infection in the PICC line so I couldn’t go home. This was a set-back and I just sat and cried. All I wanted was to continue myrecovery with my family around me. I had missed them all so much and just wanted to be at home with them. I was given penicillin to treat the infection and the PICC line was removed. I discovered I was allergic to penicillin and my medication had to be changed.
Finally, I was allowed home on March 14th 2005, a great day and one I’ll certainly never forget. I was happy to be back home, although in those first weeks I felt very tired and depressed. I had to have my bloods taken weekly, then fortnightly, then monthly. It was exhausting but I knew it was for the best. I was glad that I was being monitored as I could have relapsed at any time, and I didn’t want that. In October 2005, I was told that my blood count was stable, just inside the normal level. I heard those words every cancer patient wants to hear. I was in remission. I was over the moon, I had beaten leukaemia and was ready to carry on living my life.
Of course, I still have check ups, and my bloods are still stable nine years on. I cannot thank the hospital staff enough for everything they done for me and Leukaemia CARE for providing me with information to help me cope with my illness and to understand what to expect. Throughout all of this, I have realised what is important in life – health and family. I will always be grateful for the love and support I received from Martin, my four sons and our families. I cannot thank them enough.