When you're diagnosed with blood cancer one thing you get used to very quickly is spending a lot of time in and out of hospital for appointments. In the beginning these appointments are frequent and you're in and out of hospital all the time as they check your blood levels, take bone marrow samples and send you for scans on anything and everything as they prime you for treatment.
During treatment you become the centre of attention or at least that was the case in my experience when I went in for my bone marrow transplant with doctors and nurses in attendance every day.
In the weeks and months immediately after treatment the appointments begin to become less frequent and you're left to get on with the rest of your life. Great right? Well, actually it's not as great as it sounds. Yes, it's fantastic to be in remission and yes it's brilliant that your life no longer revolves around hospital appointments. However at the same time you feel like you've had the safety net taken away and you're not as prepared as you'd like to be for the real world again.
Being in a state of limbo
You don't want to bother your consultant with that cough you've had as it's probably only part of a cold, while you don't have confidence that your GP has either the time or the expertise to be able to make the call on what's happening either so more often than not you ignore it.
When you do go to the GP you're fobbed off with it being a cold or possibly a mild form of asthma and so you carry on. It wasn't until I actually mentioned the cough to my consultant at one of my haematology check-ups that the issue was taken seriously and I was sent for the tests that picked up my rare form of pulmonary fibrosis.
Need for change in care provision post-treatment
Looking back I'm disappointed with myself for not telling my consultant how much it was bothering me sooner but in my defence I was getting by despite the cough and otherwise fighting fit. Nobody told me this was something I should be looking out for or that pulmonary problems are something to look out for after bone marrow transplants. Had they done so I'd have reported it earlier.
However, I'm also frustrated that the various GPs when I did go weren't aware of my history or the need to be on the look out for symptoms like the ones I was presenting with. GPs need to be made more aware of side-effects to look out for with patients who have been through treatment for blood cancer and need to have more than ten minutes to deal with patients with more complicated back histories.
I'm not having a go at GPs or my consultants - it's the system that needs to change. It needs to be easier for you to book appointments and GPs need to be given the freedom to be able to spend more time with patients. They also need to be in more regular dialgoue with GPs and made aware of warning signs to flag up as I'm convinced that my condition could have been picked up much sooner had that been the case. Last but by no means least, hospitals also need to do more to prepare patients for the outside world after treatment and make them aware of signs and symptoms to look out for.
Learning from my mistakes
The need for care doesn't stop once you enter remission and if I had my time over I'd do things very differently.
For starters I'd find a GP surgery and GP that works for me and understands my condition. I'd also get getting repeat prescriptions set up in a way that works for me and I wouldn't be afraid to stand my ground to get an appointment.
Most importantly, I'd make sure that I tell my consultant absolutely everything at check-ups no matter how trivial. That isn't meant to scaremonger as the chances are that when you have a chest infection/cough/cold it is exactly that but it's better to be safe than sorry and it doesn't hurt to say.