The 12th September 2013 had been nothing unusual. As normal a day as any other. I was managing a small retail kiosk in Bluewater Shopping Centre and it had been an uneventful and not particularly busy day.
My phone rang. I don’t usually take personal calls at work, particularly as I was working alone that afternoon, but it was quiet and I saw that it was my Mum. At last, something a little unusual about the day! Mum never rings! I answered and immediately knew something was wrong. She was panicky, flustered, breathless and worried. Mum doesn’t like to bother people, especially with anything about herself, but this was different. Turns out she’d been struggling for a while with shortness of breath and extreme exhaustion. Finally, after being unable to walk to the end of the road, she’d arranged for her local doctor to see her and she was told in no uncertain terms that she needed to get to the hospital for tests. She was a bit unclear on what needed to be done so I took the doctor’s number and gave her a call.
“What do you think might be wrong?” I asked her doctor after a short explanation about how things had got to this point. “I think she has Leukemia…”
The next thing I remember is being at Colchester Hospital with my sister and brother gathered around Mum in a bed. Tests had been done and we were waiting for a visit from the specialist Dr Michael Hamblin. When he arrived it was clear that the news wasn’t going to be good. He did his best but in simple terms he told us not to plan to spend Christmas together as a family as Mum wouldn’t be around. Christmas was a little over three months away.
To say it was a shock is an understatement. For us three ‘Kids’, all in our 50s, the thought of losing Mum was absolutely devastating, but that’s nothing. Who can possibly imagine how it was for Mum. She’d be losing much, much more. Nothing could have prepared her for the news, or how to process it.
Dr Hamblin went through the options for the future. Mum had Acute Myeloid Leukemia (AML). Conventional chemotherapy was really not a sensible option. Mum was 77 years of age and her blood counts were so low her body would be unable to cope. This left two options. Doing nothing and letting the disease take its course being the first. After much deliberation and many tears Mum chose the second option, to receive a controlling cocktail of drugs intended to stabilise her as much as possible for the little time she had left.
We were given as much information as we could handle about blood counts and decided to monitor them each time she was tested. At the time of diagnosis the relevant numbers were:
Haemoglobin: Hemoglobin in the blood carries oxygen from the lungs to the rest of the body. There it releases the oxygen to permit aerobic respiration to provide energy. If Haemoglobin is low patients are classed as anaemic.
Normal count = 115 – 165
Mum’s count was 59.
White Blood Cells: are the cells of the immune system which protect the body against both infectious disease and foreign invaders.
Normal count = 4 – 11.
Mum’s count was 0.6
Neutrophils: Another form of white blood cell which fights infection.
Normal count = 2 – 7.5
Below 1.5 = grade 1 Neutropenia
Below 0.5 = Profound Neutropenia, meaning that even the bacteria normally present in the mouth, for instance, can cause infection.
Mum’s count was 0.2
Platelets: These clot the blood to prevent bleeding.
Normal Count = 150 – 440
Mum’s count was 32
There are other counts and all told the same story. In general if the counts are considerably below normal the patient is extremely susceptible to infection, bleeding and bruising, exhaustion etc and is likely to need hospitalisation and blood transfusion. Mum’s numbers were on the floor, meaning she had no ability to fight infection. She had to be extremely careful what she ate, who she was close to and what possible causes of disease, illness or infection she was exposed to.
Mum’s blood was tested weekly at the hospital. We noted the numbers from her blood counts in a spreadsheet and watched them drop as we prepared ourselves for the inevitable. On October 16th her Neutrophils had dropped to zero and platelets to 4. Dramatically low. We were all worried. If the doctors felt she would be strong enough she was given monthly doses of the chosen treatment, a cocktail of drugs which included a very low dose of Cytarabine, a chemotherapy drug used in AML treatment.
Nothing much changed over the weeks. There were regular all-day visits to the hospital for treatments and tests, and despite keeping a brave face Mum really struggled with the treatments, and the side effects.
On the 31st of October one of her blood counts, the platelets, showed a normal reading for the first time since the diagnosis. Everything else was still on the floor so infection was still a major concern, but was this a positive sign? It was not. By the 25th of November the platelets had plummeted again and all her counts were so low she was transfused with two bags of blood.
Over the next few weeks all of Mum’s blood counts started to show signs of improvement. Initially gradual, then dramatic. Unbelievably dramatic. So dramatic in fact that in Mid December, around the time we had been expecting to say goodbye to Mum, Dr Hamblin announced that she was “in remission”!
We didn’t really know exactly what that meant long term but it was incredible news. The donors of the blood which Mum was given in November deserve our immense gratitude.
Despite being in remission, Mum was to continue with the low dose treatment as normal. Dr Hamblin decided that it would be risky to stop the treatment as there was no way of knowing what would happen if she stopped. If the Leukemia relapsed the chances of achieving remission again were low.
And that’s where we are today… almost five years from the horrible day in September 2013, when we all thought we had only a few weeks left together as a family. It’s still been up and down since then, with Mum’s blood counts going down from time to time but overall she’s a very healthy 82 year old living as full a life as possible. She self-injects her six-weekly low dose chemotherapy treatment, as she has done almost since the start, at home. She hates the exhaustion and nausea which are side effects of the treatment, but realises it’s a necessary evil. After 45 courses of treatment, and at her age, she is seen as something of a miracle in the eyes of Dr Hamblin… And her children.
I’ve rather glossed over the time since we heard Mum’s Leukemia was in remission. Despite the good news things were still tough for Mum. Not just with the treatment and its side effects, but with the number of ongoing questions and the general emotional state which must come about after any devastating news. We’d been aware of her confusion and depression since diagnosis. People need help and support after any kind of trauma and we – my brother, myself, and especially my sister – do as much as we can but Mum, sadly but understandably, never really talks openly with us about how she’s feeling. She’s never wanted to be defined by the Leukemia by us or by anyone else, and she’s proudly and determinedly achieved that.
However, after a while she accepted that she needed to talk. to have a resource available to her where questions could be answered and support could be given. For Mum, that resource has been Leukemia Care, a national blood cancer support charity dedicated to ensuring that anyone affected by blood cancer receives the right information, advice and support. They understand that feelings of shock, anger and loneliness are all common at the time of diagnosis, during treatment and recovery and having someone to talk to, as well as the right information available can be a huge comfort.
For 2019 we, along with Sofa-to-Saddle are aiming to raise £10,000 for Leukaemia Care. Mum would be over the moon if you would be prepared to make a small donation, to help them carry on their great work.
You can donate to Leukemia Care
UPDATE: after almost six years of treatment mum has been given as close to an ‘all clear’ as it is possible for her to receive and has been taken off the treatment which she hated so much.