Collated by Dr. Lydia Makaroff, CEO, Fight Bladder Cancer
We knew the members of our private support forum would be full of great advice, but even we were delighted with the response to our request for some tips and tricks for family members for the Carers’ edition of Fight magazine.
PAPERWORK
Get printed copies of everything: lab results, pathology tests, scans, ultrasounds, x-rays. If you need a second opinion, these will be necessary. Having copies means that you know exactly what is found. Knowledge is power.
Have a list of medications with you at all times!
Family members can sort out paperwork and bills, contact Macmillan for budget advice, apply for benefits, blue badges, etc.
Keep a list of contact numbers for medical teams and also family and friends so you can ring or text with updates.
Start a book, write down every appointment, result, phone call – you will surprised how thick and fast they come in the early days and if you are referred to different hospitals you will have all the information to hand
PROCEDURES
Try to be at the hospital when the stoma nurse is present so you can learn the procedure.
Never assume anything, always ask, however trivial the matter in question.
Take a note book – my sister-in-law came to all appointments and brought the said notebook – it proved very useful.
APPOINTMENTS
Make sure the patient has a phone and charger to keep in touch.
Insist on coming along to all doctors appointments, whenever possible. This is scary stuff, and my partner was nervous every time she went to the doc, and she didn’t always hear everything that was said or remember it.
If you have to drop off and pick up, do something relaxing like taking a walk or distracting, like a crossword or sudoku, instead of sitting in the car worrying.
You may have to advocate for them, ask questions at appointments and demand attention from professionals when you know something is wrong.
AFTER TREATMENT
The patient will be worried, tired, uncomfortable. After an RC they are in a bad way for the first few days and look dreadful.
As a visiting family member, remember that you need to eat and sleep too. Make time for yourself. Casseroles and easy meals are essential.
Buy extra bedding and pyjamas so they can always have one on, one in the wash and a spare.
Don’t hog the bathroom; they often need the loo at short notice.
Post RC, try to get them moved to a regular hospital room as soon as possible if they are experiencing confusion or delirium. It seems to help orient them.
TAKE CARE OF YOURSELF
The best thing a family member can do is … do not go on like it’s a big deal, like it’s ‘the end’. A diagnosis of bladder cancer IS NOT a death sentence. You are not to worry. Worrying is the doctor’s job.
Please try to maintain some normalcy. Go out to dinner, have friends over, go on a hike and talk about something other than cancer.
Breathe … when things start to overwhelm you, just breathe! Stand up with your arms raised, and do three big, slow breaths in and then out.
Try and have something to look forward to during and after treatment … we would go to Wagamama’s … or take a picnic and go for a walk.
Don’t try to be brave. Cry your eyes out as much as you want and do not feel guilty! Try to laugh every day.
Have patience but also remember it’s ok to be frustrated or angry. We are human and it is unreasonable for us to be positive all the time when in these situations; there’s nothing wrong with allowing ourselves to be real about our feelings.
JOIN THE FIGHT BLADDER CANCER FORUM & GET SUPPORT
The forum has been a revelation. Fight Bladder Cancer is a highly proactive charity: they do what they say they will do. They are highly approachable and incredibly supportive.
Join the Fight Bladder Cancer support groups.
Sign up for the Fight Bladder Cancer Fight magazine.
The tips and tricks were previously shared in Fight 11: https://fightbladdercancer.co.uk/sites/default/files/downloads/Fight_Mag_11.pdf
