Patient Story | My Leukaemia Diagnosis - A Male Perspective
In this week's Patient Story, Paul Golding shares with us his cancer story and offers some great tips on getting through a cancer diagnosis and treatment as well as some insights into how you could best support a loved one going through cancer.
How did you find out you had cancer?
I had a really intense toothache and was off work for a few weeks. I saw the dentist a couple of times who sent me to the doctor. The doctor did a blood test and within 6 hours I was being treated in hospital. I went from initial symptoms to being in hospital with a diagnosis in about 3 weeks.
Were you reluctant to go to the doctor about your concerns?
Nope! I was in pain. I knew something was wrong so I booked an appointment for as soon as I could. I was fortunate that my dentist could see me so quickly and that I could get an appointment with my GP within a day or two. My cancer was very aggressive so I understand that if I had had to wait for a few weeks then my outcome may have been very different.
What were your initial thoughts upon receiving your diagnosis?
Before I was ill I had a career working with organisations in distress. My memory (although it is a bit blurred) is that I went in to 'work crisis' mode. I was keen to understand what I could do: Could I start treatment? What treatments were available? Who could I ask for help? I don’t remember being full of emotions for the first few days.
My emotions did come later. I had moments of life changing fear, of concern, of gratitude that there was a treatment for what I had, of love for my friends and family that did so much to support me. A real mix of emotions – some of which are still coming though years later.
Did you/others feel comfortable speaking openly about your diagnosis or did you/they shy away from it?
I was ok to talk about it (both then and now). On the first day I mailed 1 friend and 1 colleague and asked them to pass on the message. It really helped to not have to tell everyone myself.
My dad did admit that he found it very hard to tell people, and I know that my friends had very mixed experiences. For many of my friends I was the first close friend (and not elderly relative) to get really ill and so that felt hard for some.
How did your cancer and treatment impact on your day to day life? Job, friends, family?
I was diagnosed with Acute Myeloid Leukaemia. The treatment I had was in an isolation room and I had all my treatments in there. I was diagnosed in April. Other than a few weekends, and the odd week outside in between rounds of chemo I wasn’t properly released until just before Christmas. It was a massive life changer for me. I stopped work and for large parts of my treatment I was really quite ill. Some days I would struggle to make it the 5 yards to the shower and toilet in my isolation room. It felt like it put my life on hold for about 18 months. Before the global pandemic, only a handful of people used to tell me they knew how that felt. Now there are lots of people that say they have experienced the same thing.
What helped you through your diagnosis and treatment?
The thing I kept returning to was to focus on what I could control – and then do what I could that would be helpful to me. If it was outside my control then for me it was about learning to accept it.
There is a more elegant way to describe it in the traditional serenity prayer:
“God grant me the serenity to accept the things I can not change, the courage to change the things I can and the wisdom to know the difference.”
For some people that has been enough to help; but I know others who say that is all well and good but can you be more specific?! Which is fine by me… So some more specific things I found useful:
I actively asked my friends to write to me. Emails, cards, letters. I pinned them all up on my wall. Whenever I felt down, or anxious I just used to stare at the wall and think how lucky I am to have friends and family that care for me.
My treatment meant I really didn’t want to eat. I was sick lots. I lost my sense of taste. So my previous joy of eating disappeared entirely. But I forced myself to get calories and nutrients into me. I didn’t eat anything that wasn’t recommended by the doctors or nutritionist.
I had some wonderful doctors who would share with me as much as I needed to know about my treatment. I didn’t spend time googling treatments or options. I stayed to well known sources like MacMillan, or Anthony Nolan. Friends of mine that did go down that path often found people claiming that they could definitely cure you if you just do exactly what they say… One friend was told to leave all her treatment and go to a retreat in the US. It has always felt to me that there are those who prey on those searching for hope. Perhaps I would sum it up by suggesting … make a choice who you choose to trust in providing you info on your treatment and options.
What do you wish people around you could have done more of but you didn't necessarily feel comfortable asking them to do?
That’s a great question, and I am lucky enough to say that those around me did everything I asked of them and more. I also felt comfortable asking for anything that came to mind. I know not everyone is in that position. Perhaps that means that if you are reading this as a carer what you can do is let the person know you are there for them.
What can friends/carers/helpers/family do more to support someone going through treatment?
Firstly, let them know you care. Everybody will show and experience that in different ways (for example some people are very uncomfortable if you make a fuss over them); so have a think about what will be most helpful for them.
Secondly, listen to what the person is saying:
Sometimes all they are after is to have someone listen to them when they share how hard / unfair / unkind / frustrating it is – and that can be enough and really helpful.
Sometimes you will be able to do something - fix a problem, deal with something or someone.
Sometimes they will want you to bolster them up.
I wish I could say that its always easy and obvious what someone wants or needs. All you can do is listen and do your best.
Thirdly, (this is the hardest one for some – particularly when you care so much), look after yourself – so that you can look after them. My dad used a phrase that helped me: "you cant save someone from drowning if you are drowning yourself".
What are your top tips about dealing with this particular cancer type?
AML is quite rare. It was a beast to me – so my advice to those who have it is that this will be a marathon not a sprint. There will be ups and downs. All you can do is keep going the best you can.
As the immune system is almost non existent with AML it's also critical that you take hygiene and cleanliness (for you and anyone who visits you) really seriously. Everyone has more of an idea how to do that after the events of the global pandemic.
Were there any specific products you used that could help others?
I found ginger tea (or even fresh ginger in water) a good help for the mild sickness. There were times that the sickness was so bad there was nothing that helped.
Do you have any hints or tips that could help others?
I truly believe that everyone has their own coping mechanisms. My tip would be to keep looking for ways that help you. If things don’t work then keep looking. That could be physical or mental. It's also strange but what works at one stage may not work at another.
Early in my treatment I had lots of time on my hands so I did things like make airfix models. It was great for then – it was also very odd as I had never made one before – and haven’t since…. Later on in my treatment I found it much more helpful just listening to music and reading.
How has your experience changed your outlook on life and plans for the future?
I have said to a few friends over the years that once cancer has laid its hands on you then it never really lets go. What I have tried to do is learn how to live a life where I am content even if its still there.
Parts of my life are worse than before - I still get fatigue, I missed out on some work promotions, and parts of my life are much better - I changed career and LOVE what I do now, I know how important real connection with family and friends is to me.
If you are reading this, then I guess cancer has laid its hand on you, or someone you love. I hope you can find contentment in whatever lies ahead.
If you or a loved one are going through a similar experience to Paul, we have a range of products to help ease the awful side effects of cancer treatment in the CancerPal Marketplace as well as a range of Men's Care Boxes, full of products to help comfort and support.
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