Hi All,
To cut a very long story short… After 6 years of extremely successful treatment with oral meds for metastatic breast cancer (and zero side effects), this year my partner has developed tumours in both her brain and spine. This led to two recent operations, each with accompanying radiotherapy. However, this also highlighted an ‘issue’ and I was wondering if anyone else had a similar experience.
The concurrent brain and spinal tumours created overlapping neurological symptoms, which also happened to be similar to side effects of the medication used to tackle each problem and, in turn, also mimicked certain ‘red flag’ signs I was meant to look out for indicating the need for urgent admission via the nearest A&E department.
Untangling this mix of symptoms and side effects proved impossible. Two trips to A&E, one of which resulted in a completely pointless admission, were unbelievably distressing. As a result, we decided to ‘wait it out’ for the surgeries.
Today’s example: My partner appears to be quite confused. Is it a result of the brain tumour? The radiotherapy? The morphine? Coming to the end of the latest course of dexamethasone? An infection? Should I be worried and, if so, how worried should I be? These are the questions I ask regularly of myself, Google, and the various care teams. There are plenty of other examples involving pain, nausea, neurological issues, constipation...
I began by worrying about each and every little thing being a sign of something more sinister. This became intolerable/unmanageable and, as time went on, I had to settle on monitoring some ‘key’ indicators such as temperature and O2 saturation.
Unfortunately, being under the care of several different teams only adds yet another layer of complexity to understanding what my partner is experiencing. This usually results in a round of telephone calls and emails to the brain team, the spinal team, the oncology team and the local GP, district nurse and pharmacy services - followed by me trying to make sense of whatever advice any or all of them can provide.
I think I just wanted to highlight how confusing and difficult I find it as a carer to navigate the landscape of cancer care.
With love and gratitude.
Hi
I get what you mean about things being confusing. At one point Janice was under gynae, heart, lung and gastro teams - sometimes meaning even the doctors lost track of her notes.
Then of course if there is one thing more difficult than being admitted to hispital it can be getting out again.
<<hugs>>
Steve
Hello, I get it, my wife with stage four breast cancer, heart failure, diabetes out of control, now lost the use of her bowels from everything, two strokes in... Yadda yadda. Last appointment the daughter took a list of all the symptoms, l was fed up of not being listened too, she took was dismissed it felt, kidney team as she has CKD too has re-reffered elsewhere and so the merry-go-round continues.
I've shouted from the rafters about everything that worries me, but have just had to start to let it go. My wife is clearly now in cognitive decline, possibly early aktziemers. I'm only human. As yo
are too. You can only do your best.
I make sure she eats, drinks, takes her meds personal care has gone, but she's safe.
Can't do anymore but stand beside her
