Hi...so this is intended to start a thread under this heading...idea being not to scare each other witless with horror stories, but to highlight stuff that happens , to help each other anticipate.
Here is my starter story. At first chemo cycle, H was already vv ill. On chemo day one we were handed a bagful of drugs to take as part of the cycle. By day 2, he was an inpatient. By the time he was discharged, a week later, most of the drugs had been changed. On second chemo cycle we brought the bag contents back as instructed and it was handed back with some extras. Some of the drugs issued on discharge started to run out...I phoned several times and each time was told, nothing to worry about. For example, steroids were only needed for 3 days. But eventually everything ran out. Seemed a bit odd. H’s breathing got worse. Made a lot of calls. WE EVENTUALLY FOUND OUT THAT 5-6 OF THESE DRUGS WERE SUPPOSED TO BE LONG TERM, AND WE WERE SUPPOSED TO HAVE BEEN TOLD TO ASK THE GP TO REISSUE THEM. No one had told us this on discharge. I’m shocked by this, and politely but firmly told the Hospital and the GP that their processes need looking at. The discharge letter eventually sent to the GP was also unclear...a box at the end of the letter said no action needed by GP. GP was pretty cross ! Whilst hanging about at the surgery to get all these drugs reissued, I chatted with people and heard similar stories. This sort of mess up is not unusaual.
So...my starter tip is...on discharge from hospital, or on chemo cycles, insist on a drugs briefing. Go through every box they give you..Find out if a drug is supposed to be reissued by the GP ( which means you have to ask them to do it ) or, if it’s a limited term item as part of chemotherapy cycle . I don’t know whether drugs are chemotherapy or “other” without being told, and neither will other carers.
I hope others can post similar stories to share experiences
Great idea to start the thread!
Yours is a pretty good starter tip even without the incompetence /bad communication you experienced. Generally on discharge there should be a full written summary of drugs, but this is sometimes rushed, and not communicated by doctor prescribing the drug so unfortunatly miscommunications around medication are common.
It’s good advice even to have some kind of system yourself about how drugs are stored and labelled as they quickly mount up. A year into my dads oesophageal cancer diagnosis we must have had over 50 different drugs prescribed. And on top of that loads of over-the-counter extras. Feel like we could open a pharmacy with our current stock! He is now on palliative care, so no more chemo drugs, but still loads of antibiotics and different pain relief.
We have a big plastic box with ziploc bags labelled with the frequency (once a day /three times a day etc) and then have written on each box what the function of the drug is in our own words (eg omeprazole = pre meds tablet) We also have a notebook that sits on top of the box where we write down each day what has been given /when. This is helpful when multiple carers are involved, to make handover easier.
My biggest starter tip would be to remember to look after yourself as a carer. Prioritise your own mental and physical health over the one you are caring for. This might sound harsh, but you are of no use as a carer if you are burnt out or are putting your own needs to the side. Self-care might mean accepting support, so that you can take a day off from being the main carer. It could mean fluffy self-care activities like spa or massage. Personally, for me it is taking regular excersise, eating fruit and veg and keeping on top of my own health (smear test up to date /visit to dentist /podiatrist/ chiropractor/ therapist) Your role as a carer might be for only a few months, but it might be also be for a few years, so it’s important not to put off your own care until “after the cancer”
Hope this is useful to someone who needs to hear it!
Thanks Pot noodle...good points there. We are using a simpler system for drugs, but yes, a system is needed. I found those pill organiser things are v useful. Means you count the drugs out once a day, instead of every time a dose is needed. Only a few pounds at pharmacies. Self care...I’m trying, but far from easy. Would welcome others to share their real life tips. I’d feel v mean going for a spa day without Mark (but it would be a grand thing to do, for sure).
Maybe another thread about work plus care would be worth starting, as I’m supposed to be restarting my challenging lonely work part time next week, and I’m dreading this. We have a lot of sleepless nights due to H’s dreadful pain. I’m not sure my cumbersome old fashioned employer will agree part time work, but even if they do....I just don’t know. I work from home. Lots of deadlines...intricate work.
looking forward to reading other responses.
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