Self advocacy, dealing with pre-existing conditions and variations in cancer care - a place to share your experiences and support one another

This is an important topic as self advocacy is hard, really hard, for most of us.  We're all conscious that Doctors are busy; we don't want to ask “stupid questions; we're scared to admit when we don't understand something; some stuff is just really embarrassing to talk about; some medical staff can be quite intimidating.   Somehow though, we have to get over these fears and concerns and remember that WE are the most important people in this situation.

My top tips, even though at times I have to push myself to do this:

• Write a list of questions beforehand, and tick them off in the discussion
• Ask when you don't understand something, and ask again until you do understand 
• Ask “why” - it's a powerful word to gain better understanding 
• Repeat what you're being told in your own words to check you understood 
• Make notes, and don't be afraid to say “hang on, slow down” to make sure you capture everything
• Call your medical team when you have a concern and be politely insistent to speak to the right person
• And if this is still difficult, bring a friend or family member with you and ask them to support you actively in the discussion 

It's great that Macmillan are encouraging self advocacy and bringing this topic for discussion. 

Hello Steph (Steph - Macmillan) 

Yes - I have had many delays in my treatment. Personal advice, anyone you come into contact with on your journey, CNS, consultant, get their name, e-mail address and telephone number. You never know when you might need it!

Always be polite but firm and remind them you are ill - you may have anxiety and you are easily available to take any cancellation that would bring forward your next appointment.

A "Thank you" and a box of chocolates can get you a long way. .

It is hard and if you are on the diagnostic path remind the staff of the cancer pathway time line.

PALS (PASS in Scotland) - Patient Advice and Liaison Service are always there to help.

My CNS said "Brian, he who shouts in the NHS gets" - I did laugh and shouted at her and got what I needed but we were having a laugh at that point.

I wish you all the best with your personal journey.

Best wishes - Brian.

I have very long standing Ulcerative Colitis plus several other autoimmune conditions. When I started chemotherapy the pharmacist told a nurse to tell me that  I couldn’t take my UC medication during thr 6 months of treatment . I asked why and they couldn’t give an answer . I asked if they would speak to my UC consultant for an alternative, pharmacist said no. All of this via the nurse despite the pharmacist being in a room a few paces away. I explained that if I had a flare up of UC I would almost certainly  end up in hospital if I don’t have medication. To be honest it was the last thing I needed at my first chemo session and not even done face to face. I was furious that no one cared about my underlying conditions and even more that they weren’t prepared to speak to my consultant. It’s so arrogant and lacking in care. In the end I dug my heels in and stuck with the medication. The UC consultant was not impressed that I was put in this position . He said there were no contraindications with chemo treatment .

i had other incidents where I had to advocate for myself and was encouraged to do so by the chemo nurses. The thing is when you feel so ill with treatment and all your energy is used to keep going it really is the last thing you need.
 

I am just at the beginning of my cancer journey, and I find the thought of having to advocate for myself quite terrifying. I am quiet and shy by nature, and find medical staff a little intimidating. When I go to the doctor for any reason, I just want them to tell me what to do, and I am relying on their expertise to know the best way forward. I realise I don’t really ask questions I usually panic and just want out of there as quick as possible. I have now been assigned a Macmillan nurse and I’m hoping she will be able to help me. I’m very interested in how other people feel about this.

Hi Pricilla

Hi from me, and welcome. I hope you find these forums helpful and supportive.

Is it possible for you to be accompanied by someone when you go to appointments? A friend or family member? 

If you have discussed your situation beforehand, and written down any questions you have, the person with you can support you through the appointment, maybe write down what is said, remind you to ask things.,...my friend did this for me at one appointment, and it was really useful!

There are advocacy services available too.....if you do a bit of research online, you may find a local organisation that can help you.

You don't have to be alone as you go through this initial stage. I hope you get good news at your next appointments!

best wishes

Kate

Thank you Kate. I am going to take someone with me to my next appointment and that’s a good idea to write down some questions as my mind goes blank when I get in there.

Hello Pricilla 

I hope you don't mind me joining this chat - here's a link you may find helpful in listing your questions before the meeting;

Questions-to-ask-your-healthcare-team

Best wishes - Brian.

Thank you that’s very helpful 

Hi Pricilla, I understand the nerves when asking doctors questions and often forget what I wanted to ask during appointments. I make a list of questions and take them with me to appointments. I have also emailed my oncologist a couple of times with my list of questions. Emailing took all the nerves out of it. 

I finished treatment in July and am recovering at home. When I first met the oncologist in December I gave her a list of my diagnoses as I have a few. The most important one being my lung disease which affects my mobility. I got very breathless after my last 2 chemotherapy sessions. I spoke to my GP and bloods were taken which showed a low iron count. My GP messaged the oncologist requesting an iron infusion for me. My oncologist replied that my iron was not yet low enough for that. My GP pointed out that I have lung disease and so will feel breathless sooner than the average person with a low iron count. The oncologist didn't reply. However when I saw the oncologist a week later and she saw how breathless I was, she rethought her plans and delayed my next lot of treatment, radiotherapy. Clear and firm reminders of our other health conditions are too often needed and when we are feeling ill, that can be very difficult to do. It took my oncologist seeing me so breathless and with that in mind, I would suggest sending a recorded video of yourself via email if it might help remind them of your other health conditions (depending on what it is or course). 

I have a macmillan support worker as well as a macmillan nurse and they are very supportive. The macmillan support worker helped me get red cross transport. 

Lots of good answers here and hope they help you through your treatment with the consultants/oncologist keeping your other health conditions in mind.  

Thank you