One thing that you dont really get told when sitting in a cancer diagnosis is all the admin work that will need to be done. And there is alot of organisation that is needed. I think we are lucky in that we are both able to keep track, but the things that need remembering must be overwhelming for many people. I would worry were an elderly relative of mine having to be on top of all the items we have to do.
First up is the many tablets that are taken each day. We now have a daily ticklist, as there are currently 8 different tablets required throughout the day. This then increases during the time of any treatment, and that can get very confusing as there are additional tablets for a few days, then going down after 24 hours, while the normal tablets are sometimes dropped, sometimes not depending on the treatment drug. And this change takes place during a period of very high stress, so it can be hard to recall what needs to be done. Particularly as the hospital dont give out a day by day list, but verbal instructions that we need to make sure we catch adequately. In that moment of pain and confusion, it can be an awful lot to take in.
Next to manage are all the appointments. A regular scan and check up with the specialist will entail seperate appointments with different departments, all needing to be coordinated to ensure there is enough time between the bloods and the MRI to get across the building. If treatment is happening, then that entails more pre-scans, followed by bloods, and insertion of the tube for the drip, followed by the actual day in the chair. There is help of course, but you need to know when to be where, and sometimes an appointment will get missed by the nurse team (no fault given), and you have to be on top of picking up that.
Luckily we have private health care, so all the appointments and drugs and treatment have been covered, but yet again, we need to be on top of the authorisations, making sure they are ready before the appointment. And they dont always authorise everything you need straight away, some times you have a scan, then go back to approve a follow up. A new consultant or drug will need some extra paperwork, especially if it is a little out of the ordinary, or is something new.
Then we have all the other little appointments that you need to make. Reflexology to try and keep calm, haircuts to make yourself feel good, someone to pick up the children if you are running late at an appointment (because hospital appointments never run on time of god forbid early!). Then there are all the school things that need recalling, making sure they have the right bag and clothes for the day, making sure we know when to collect them, making sure we have planned for dinner. These are the usual tasks in any household, but with an impaired brain they can take much longer, and need real thought.
This does sound a little like moaning, but this is a realistic list of things that need to be addressed on a regular if not daily basis. When coupled with the worry and concern of the disease as well, it can be a miracle that the children are fed and wearing the right clothes for the day. I think as a household we now exist on a higher level of stress, held together by coffee and gin, with just the love of our family keeping us sane.
It can almost be counter productive when a relative offers to come and stay to help. They dont always know the routine, and just small things being out of place can cause my wife to get frustrated. The right tablets are needed at the right times, and the list needs to be ticked to ensure we know they have been taken. It is a fine balance to keep her alive. Everything needs to be planned to ensure her logical brain can cope with the information it gets, a change can send her in a spin.
That is a snap shot of the issues that are dealt with here. I am sure that many people experience much worse, and I have full sympathy and empathy with their struggles. Sometimes it helps to know that others have a similar battle, and that you are not just battling with these things in isolation. I know it has sometimes helped to chat with a friend in the similar situation to me, as friends who arnt in that situation maybe dont fully grasp the implications.