The 9th April will always be a date we remember. It’s the day my husband Tony was told he was very poorly with Acute Lymphoblastic Leukaemia (ALL). All I could think was ‘heck, that sounds bad’. We had never heard of it. We knew leukaemia was a blood disorder but we had never thought of it as being a type of blood cancer. Looking back all the signs were there; the extreme tiredness, the aches and pains, and the breathlessness but we put it down to just getting old!
Tony had a physical job. He was a carpet cleaner and was finding it increasingly more difficult to carry on. He was losing weight, looking gaunt and his complexion started to appear grey and ‘pinched’. Eventually he went to the GP who was dismissive (this didn’t go down well) but thankfully sent him for a blood test. Within a couple of hours Tony was asked back to the surgery. It didn’t sound good so I went along with him.
With a hemoglobin level (the protein in red blood cells that carries oxygen throughout the body) of 53 (it should normally be around 135-175 for men) the doctor sent him direct to A&E for a blood transfusion. The offer of an ambulance set alarm bells ringing. The hospital didn’t seem too worried but he was admitted as a precaution. At first they were unable to discover the cause, but then the bombshell was dropped when the resident haemotologist saw the blasts (immature cells) in his blood. Things started to happen pretty rapidly from then on. Tony had 60% blasts.
After these tests he was told he had ALL, without me or anyone else in the room and then left to absorb the news alone. I didn’t know either that they had told also told him he had an acute form of leukaemia and, without treatment, he would maybe only have six months to live.
Looking back all the signs were there; the extreme tiredness, the aches and pains
Then we had the first glimmer of good news – remission after the first round of chemo. It was fabulous to hear but slowly the reality of it all was creeping in. Life had changed overnight and we began to look for the new ‘normals’. The Macmillian cancer team were fantastic. They were there to answer all our questions, and boy, were there plenty. But more than that, they took control of the important stuff we had no idea about, like blue badges for parking, and social care benefits. Tony worked all his life but the money side of things didn’t occur to us.
As time moved on, Tony developed numerous allergies during his treatment. The weirdest is that he became intolerant red meat and he now breaks out in random rashes and an upset tummy.
He and I kept in touch whilst he was in hospital by Skyping nightly. Then one morning he came on screen looking like he had been three rounds with Mike Tyson. It transpired that in the night he had got up to use the bathroom and as he sat on the edge of the bed felt dizzy and fell face first flat to the floor. The swearing coming from his room alerted his nurses and they rushed in to help him. A portable X-ray showed nothing was broken but my goodness he had two wonderful black eyes and still carries the marks from the episode today.
Life had changed overnight and we began to look for the new ‘normals’
He also had symptoms of neuropathy (when the nerve fibres react) caused by some of the chemo medication which were hard for him to cope with. He struggled to get around in the early days as his feet first tingled and then became numb. It has eased a little, but still to this day lingers.
After the first stage of treatment Tony came home. The plan at first was to start the consolidation stage of treatment (used to kill any remaining cancer cells after remission) as an outpatient, but that was soon out of the question. On top of the side effects from the chemo, Tony developed what’s known as Stephens Johnston Syndrome – a rare disorder of your skin and mucus membranes. In this case, Tony got it as a reaction to the chemo. It left him having to be tube fed with a morphine driver for the intense pain from his ulcerated lips, mouth and throat. Twice I stayed overnight, not expecting him to be alive the next day. Somehow he was. These were some of the darkest times of 2015.
The doctors stopped the consolidation and rested him a week or two, deciding to take him straight onto the maintenance phase (to avoid the cancer returning) and he was given a carrier bag full of tablets to take at home. He managed the first treatment but again the ulcers appeared. This time not so bad as to need tube feeding, and this time not the same Stephens Johnston Syndrome. It turned out to be a bad bout of herpatic ulcers. He was readmitted again.
The consultants reviewed his case and decided that this time enough was enough and all of Tony’s chemo treatment, apart from the TKI Imatiib to control the PH+, was to stop. He was removed from the trial too. It was a terrifying and confusing moment. We had been told he needed the chemo to live and now they were stopping it all. He was told that sometimes having a decent quality of life outweighs the attempts to beat the cancer.
We have moments when life is not ruled by blood counts and treatments again, but it’s always there in the background
The medical team then told him that if he had a raised temperature then we must go straight back to the hospital within the ‘golden hour’ of it starting. We live 40 minutes from the hospital so that was scary too. A couple of times early on his temperature rose, and he was readmitted for IV antibiotic to cope with the infection and sepsis he developed. Direct access to the specialist cancer ward and medical teams was reassuring.
We now know that the ALL is there, the PH+ is lurking in the background but at this present time it’s all under control. The regular bone marrow biopsies are also on hold until such time as things kick off again. And that’s the time bomb with Tony’s illness. It’s not if, but when. He has regular blood transfusions that have been set roughly three weeks apart, and he sees his consultant every ten weeks. Everyone knows him in the hospital, even the pharmacy. In a strange way, it’s like a home from home.
Other than that life is (almost) back to normal. We can't live life like we used to, we can’t go abroad, and we prefer to stay close to home, just in case. But we set goals to aim for and, at the moment, we are awaiting the arrival of our third grandchild – after all they are our future now. The support from our children, Tony’s family and our close friends has been immense. We see them all more regularly which cheers him up. Our children are particularly protective of him.
The one thing that matters now is more than two years after we first heard about ALL Tony is still here
We have moments when life is not ruled by blood counts and treatments again, but it’s always there in the background. People think Tony is fine now, and outwardly I suppose it must appear so. But I see the depression that often hits him now, and how quickly he tires. I often have to remind them that he is still very poorly. Even the common cold means a trip to see his consultant team as our GP wont deal with it.
But the one thing that matters now is more than two years after we first heard about ALL Tony is still here, enjoying a different lifestyle for sure, but still in remission, which is good.
Photography by Aden Priest Photography