Today has been one of fluctuations. I started connected up to multiple IV drips but by the middle of the day all had been disconnected.
This is because the medical team have changed their plans to some extent. The anti-fungal drug that they need to manage my lung infection (Aspergillus fungal infection) is best treated with an IV drug called Ambisonne. And the medical team want this infection to be well treated prior to administering any further Chemotherapy.
With this in mind the main focus of the drugs is to attack this fungal infection and all others are merely to keep me in good health. And given there is only one dose of Ambisonne daily they believe I can be released again for 10 days or so under the “hospital at home” program where a nurse visits daily to help out with the IV medication. With the decision made then it is a matter of waiting a day or so (even more) for the team to put this into action. This starts with a visit from the hospital at home doctor, then the hospital at home nurse, then the pharmacist who organises the drugs. Nothing happens quickly in hospital so there is a lot of waiting around.
Which brings me to resilience. What is it and why is it important for my situation?
Resilience can be described as the ability to manage through the tough times – to bounce back from adversity (it’s a pity our children are not taught this more often – we seem to only focus on keeping everyone happy rather than acknowledging that tough times exist for all of us and our children).
And for me the tough times are either the process of working through the cancer treatment or more often the extreme amounts of time just waiting around for the next dose of IV drugs without anything in particular to do. So how to you keep on top of things?
To be resilient you need to be strong. You need a positive attitude and the ability to keep going when you encounter small setbacks. You need to be able to adapt well to change.
You must accept reality (in my case stuck in Hospital longer than I would think is necessary).
You need a deep belief in the outcome and have to back this up with strong values.
You need to be able to improvise.
So if I think about the main thing that requires my resilience at the moment it would be the potential boredom of waiting in hospital when I don’t feel particularly sick and require just one dose of IV drugs per day to treat the fungal infection. I am used to being busy and keeping busy on a day by day basis – there is rarely any waiting around in my previous life.
So how do I handle this? There are several things I have found that help me with resilience and to a certain extent is involves learning new behaviours, thoughts and actions.
I avoid seeing this issue as insurmountable – I am realistic. Time will cure this if managed well.
I acknowledge that the overall condition has and will cause a significant change in my life with adjustments required.
I set goals that are realistic and based generally on daily or sometimes hourly timeframes.
I take a positive attitude towards the recovery process (generally optimistic).
I value and keep my connections with family and friends, which helps me with the resilience process.
Hopefully tomorrow I will get to return to home again for another week or so.
Stop Press: Since writing up the blog this afternoon I have had another visit from the medical team to affirm that the “home hospital” release won’t happen until Monday. However Dr Jo has thought innovatively and has worked out a plan to release me over night and perhaps during the day, given that I only need to be on site for the Ambisonne for a period of 2 hours or so around about 6pm each day. Yipee this means I can check out overnight and go and sleep in my own bed tonight as long as I’m back at the Hospital by 10.00am.