Mum saw the doctor today, they’ve paused the chemo and want to deal with the blood clot as she said that was more dangerous that the cancer at the moment and she’s worried the chemo could make it worse if they don’t treat the clot.
They’ve put her on tablets for the clot and then we just have to wait I guess. Mum doesn’t ask many questions and the one she didn’t ask was is the treatment actually working! Ahh
My assumption is that if the chemo wasn’t then there would be no point even discussing going back on it and the doctor would confirm it’s got worse. She didn’t say that, however doesn’t sound like she said a lot! They clearly reviewed the scan, it’s how they saw the clot in the leg.
The combination of my mum who doesn’t ask questions and a doctor who doesn’t give much information is a tough one!!! I respect that mum is the patient, but it does make it so tough when you’re trying to establish what’s going on! Hence my questions here and slight rant!
Mum had 3 chemo sessions in total, is that sometimes considered enough, if she doesn’t have it for a month or so is that normal?
Thanks
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It's tough isn't it when we feel our questions are unanswered especially when the patient doesn't ask questions but if they're of sound mind, clinicians aren't obliged to answer others' questions.
Clinicians have to prioritise the highest clinical 'emergency' in a scale and anything that 'threatens life' including heart issues, breathing and clots would fall in this category and trump conditions even cancer which can be 'controlled' more slowly.
At the moment more people are being admitted to hospital needing airway or heart stents as the pandemic has meant many who required treatment haven't visited their doctor or been referred for such treatments. These have to be done usually before starting cancer treatments.
Most cancer treatments are extremely harsh and if a clinician ignored such a vital issue and continued with treatment, they could be considered 'negligent' and failing their duty to 'first do no harm'.
This can be hard to understand as we often think cancer is ravaging our body every minute that action isn't taken whereas the reality is often we have it for years before experiencing symptoms.
Many patients take a break from chemo if something arises such as infection and the pandemic has interrupted many treatments. Some (when we're not in a pandemic) have a holiday/travel during this period.
Does your mum have a specialist lung nurse? Usually they're able to have a little more time to explain. If not, write down your questions and ask your mum if she'd allow you to call the consultant's secretary for an explanation....
I was similarly frustrated a few years ago when my dad had bowel cancer again (he'd had it 27 years earlier) and needed major surgery. There was fear his heart wouldn't withstand major surgery (he was only about 8stone) but he didn't want to ask any questions... As I'm involved in cancer research I had lots of them but had to respect his approach and priority of 'getting home'. My parents don't often understand what the doctor is telling them - they didn't study biology, understand little about nutrition, health or exercise so just follow medical instructions.
My dad showed me a letter he'd recently had from a consultant as he couldn't understand it. When I translated it into 'plain English' it was as if a weight had lifted from his shoulders - he clearly thought he had skin cancer but because the letter stated initials, he couldn't read it for himself - 'no evidence of SCC' meant nothing. His fear is if he has to go to hospital is that mum would be put into care. Parents want to protect their family from worry ....so by not asking questions, they don't have answers to the family's questions...
Hope this maybe reassures you but you may find this link useful.
You could also call Roy Castle lung cancer foundation nurse led helpline with questions .. roycastle.org/app/uploads/2...
JanetteR57 has given you a good explanation in reply to your post. Please don't hesitate to contact us( the helpline nurses) if you would like to discuss any questions you may have.
Hello Janette, thanks for your advice and kind words. I found out today that in fact the doctor had told my mum her treatment wasn’t working - she just wanted to tell me to my face. Mums decided that it’s best to stop treatment as a fourth option would be very harsh and not likely to work. She said her immune system would be ruined by another treatment round and mum would likely be need hospital treatment should she pick up germs or an infection.
Clearly we’re devastated, but oddly there is some relief that the frantic grasping of hope for treatments which cause such horrid side effects is gone. The doctor was really surprised at how well mum looks and said that she’s looking at up to a year in terms of prognosis. We’re getting the hospice involved now to manage any symptoms and a scan in 3 months to see what’s going on.
Not the news we ever wanted but my hope is now we take charge of this and make the most of the time we have with mum.
Understand the relief - as you say, for some the treatments can outweigh quality of life if they're not working and better to make memories with loved ones if that's her decision. Important that given this that hospice support services arranged - not that it means that anything will happen imminently but have learnt that the earlier they're involved, the better it is for everyone - and often cited as uplifting experiences for all at such difficult times. hope that's the case for you and your family. good luck and keep us posted.
Many thanks, she’s been referred to the hospice for support, they’re coming to the house to discuss what they offer. I’m comforted to know she can be supported now when she’s feeling relatively well In order for her to live well and comfortable for a period of time. I’ve read how this can be left too late.
Thanks you’ve provided such support for so many, it’s been so gratefully appreciated.
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