It seems forever since Tony received his diagnosis -the 9th April, 2015. That date will never leave us but thinking back things had started to happen much earlier than then. The tell tale signs were there - the extreme tiredness, the aches and pains, and then the breathlessness but we had no idea what was causing them or to be on the look out for leukaemia.
Tony was a Carpet Cleaner, which meant lifting and shifting his equipment most days and he had started to complain about how difficult it was becoming. At 63 we just thought it was his age catching up and at first laughed it off.
However he was looking gaunt, his face was drawn and he looked grey. He fell asleep easily. He began to get worse until I said to him he ought to go and see the doctor, especially when he came home almost in tears telling me how he had found himself being helped by a 75 year old to lift his equipment whilst he sat on the kerb feeling exhausted. This just was not a good thing. He had been an active man all his life and suddenly he felt he had less strength than a new baby. He doesn’t do ‘being ill’ well either.
That night though I noticed how rapid and shallow his breathing was. Something wasn’t right but I thought maybe he had a bug or something.
So go to the doctor I said which he initially brushed it off, thinking a couple of pills and it will resolve itself.
Blood tests & GP visits
The Doctor was dismissive (which didn’t go down well) but thankfully he did send Tony for a blood test. Within a couple of hours he was asked back to the surgery. This didn’t sound good so I went along with him.
His blood count was 53 and the Doctor (a different one to earlier) was really concerned. Alarm bells started to sound when he offered him an ambulance as he was that worried. This was not what we expected at all.
The hospital were concerned but not overly so at first and spent two days deciding what might be the cause of the low haemoglobin. There followed a number of tests and at first they kept saying for his haemoglobin to be that low he must be bleeding somewhere.
Fortunately the haemotologist saw the blasts in his blood and things started to happen pretty rapidly from then on. Tony was told he had acute lymphoblastic leukeamia right away, without me or anyone with him and then left to absorb the news.
I didn’t know then that they had said to him was that he had a rapid hitting, acute form of Leukaemia and he would maybe only have 6 months left to live. The hospital didn’t have the capacity to treat him but luckily we have a dedicated cancer unit nearby, with an ALL specialist team too.
He was transferred to the Queens Centre Oncology Unit in Castle Hill Hospital, Hull and the team there rapidly moved in to sort things. We were in shock. Hospital is serious. A cancer unit even more so. They knew how to cope with us and explained things carefully, and then explained it all again. We have a big family so they explained it all to them too.
We still thought it was something that would be over quickly, and it wasn’t until his consultant came to see him and began to explain how things would happen that the serious nature of this began to sink in.
Acute lymphoblastic leukaemia. ALL. Until that point we had never heard of it. We knew leukaemia was a blood disorder, but cancer? We had never thought of it as being that. Blood Cancer. Blimey this was really serious.
Gradually things fell into place and the symptoms he had been suffering all pointed to the diagnosis. At first they needed to take more blood tests to work out the strain of ALL.
We had heard of leukaemia, but still didn’t understand the severity of it even then. It took some to work out. "Come on," we said. "We have a holiday booked in four months time!"
When they said to cancel that that when it really began to get scary. How serious would this get?
The second blow was the wicked Philadelphia Chromosone. ALL PH+. Being told what this meant, that it would not go away, could not be cured was a massive hit. It began to dawn that this was not good. Not good at all. Tony had been strong before he fell ill, but he wasn’t now. Would he be able to cope with what they were going to pour into him? All the chemo? He was already pretty weak. We asked lots of questions and most were answered. The one we daren’t ask was the prognosis.
The third blow - ALL PH+ and a 63 year old man. Age and PH+ meant they would not consider him for a transplant. Heck, that means they don’t expect him to get through this we thought. So Hyper CVAD was the only route, with the TKI Imatinib (Glivec) daily to control the PH+. Where were the positives in this? At this point we couldn’t see any...
How can you go from a quiet, happy life to the furore of chemotherapy overnight!
So the first stage, intensification, began. We remember sitting, watching the Chemo Nurse bring in the pouch of chemo, and start the infusion. I wanted to rip things from his arm and take him away from everything. Protect him. We knew from talking to people what lay ahead. A long, sometimes brutal, path of treatment that would take our normality from us. But hey, we are going to beat this!
The blood counts dropped rapidly and as the treatment progessed he became used to the daily chemo and blood transfusions. The bone marrow biopsies and intrathecal injections. The daily blood checks became a way of life and we began to speak in terms of blood counts and side effects. At that stage vocalizing the word Cancer was very frightening.
Remission & support
Then the first glimmer of good news - remission after the first round of chemo! Wow. That was fabulous to hear. Slowly the reality of it all began to creep in. This was a long haul thing. Life changed overnight back then, and we began to look for the new ‘normals’.
The Macmillian Team were fantastic. They were there to answer all our questions, and there were plenty. But more than that, they took control of the important stuff we had no idea about, like blue badges (ALL patients are registered disabled) for parking, and social care benefits. Tony worked all his life, and the money side of things didn’t occur to us. Audra visited him on the Ward and completed all the forms with him – a real advocate of the best kind and so supportive without being overbearing.
We like Audra, Nicola and the rest of the Team at Castle Hill. Whenever we needed a chat about stuff they were there to help to listen, to answer our questions. They talked sense about everything.
Tony developed numerous allergies during treatment. The weirdest was him now being unable to eat red meat. He breaks out in random rashes and upset tummys.
We 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. In the night he had risen to use the bathroom and as he sat on the edge of the bed was dizzy and fell face first flat to the floor. The swearing coming from his room alerted his Nurses, and they rushed in to deal with him. A portable Xray showed nothing was broken thankfully but my goodness he had two wonderful black eyes and still carries the marks today from the episode.
The neuropathy caused by some of the chemo medication was really hard for him to cope with. He struggled to get around in the early days as his feet first tingled and then became numb. For a while he developed the Neuropathy stumbling gait as his feet seemed to take on a life of their own.
So after the first stage of treatment he came home. The plan at first was to start the consolidation stage of treatment as an outpatient. Well, that was soon out of the question.
On top of the side effects from the chemo Tony developed was Stephens Johnstone Syndrome - a reaction to the chemo and we were told a very rare situation. He was 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.
They stopped the consolidation and rested him a week or two, deciding to take him straight onto the Maintenance phase and he was given a carrier bag full of tablets to take at home. He managed the first treatment.
Again the ulcers appeared. This time not so bad as to need tube feeding, and this time not Stephen's Johnstone Syndrome - 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 chemo treatment, apart from the TKI Imatiib to control his philadeplphia chromosome would be stopped. What a scary moment that was. We had been told he need 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, so his Medical Team decided enough was enough.
They told him that if he had raised temps then we must go straight back to the hospital within the golden hour of it starting. We live 40 minutes from the hospital. 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 / sepsis he developed. Direct access to the specialist Cancer Ward and Medical teams was reassuring.
The consultants told us they were pleased with his progress but that if we were wanting to have a holiday then early on in the year might be good. This sounded ominous but we never discussed that.
Coming to terms with life with ALL
What began from October 2015 were regular weekly visits to the blood cancer clinic, which fell back to fortnightly and then monthly. A pattern developed, and each Sunday, before the visit the following day the anxiety started whilst we wondered what would be revealed by the following days blood test.
We knew, know, that the ALL is there, the PH+ lurking in the background but for now it's under control.
The regular bone marrow biopsies are on hold until such time as things kick off again. That’s the time bomb with ALL PH+. Not if, but when. But the consultant visits have dropped back to bi-monthly, with a monthly visit for blood test and two pints of blood given monthly to cope with the anaemia. His counts have been stable for several months now - even the bcr/abl which is the significant measure for the PH+ which will signify things are back.
Other than that life is almost back to normal. We cant live life like we used to, can't go abroad, and prefer to stay close to home just in case. However we still set goals to aim for. Our Son married last October, our daughter gave birth to our second grandchild, a couple of landmark birthdays meant family parties, and now we are even thinking about Christmas 2016. We never thought that would happen this time last year.
Hope is something that has returned to our vocabulary. We take the odd weekend away and spend as much time as we can with our close and extended family. The support from our children, his family and our close friends has been immense. Something brilliant that happened and we now see his sisters and brothers more regularly, which cheers him up. Our children are particularly protective of him.
We have moments when life is not ruled by blood counts and treatments again, but its always there, lurking. People think he 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 and have to remind them that he is still very poorly.
When I asked him last August what the best thing about his birthday was he said it was not having to have a blood test that day. This year it was watching England beat Pakistan at the One day Inernational Cricket Match live at Headingley - a special birthday present for his 65th Birthday. ALL is still there, but it has taken a back seat for now.
Credit to Aden Priest Photography for the pictures of Tony.