1. With knowledge comes power
Gather all the necessary information about your own cancer. Find out the type of cancer you have, stage/grade, and hormone receptive details. This information is critical if you want to understand your disease. It can help determine the best treatment option available for your condition. The About Cancer section of Cancer Research UK is a great resource page for cancer.
Consider Phase 1 clinical trials if you are done with standard treatments, then visit your nearest Experimental Cancer Medicine Center (ECMC). Strict criteria are followed to determine if one is eligible or not. Always ensure you have an understanding of the trial’s objectives. The outcome of phase 1 trials may determine whether doctors decide to proceed further with the new treatment. These results will also point out the side effects of the new treatment. Doctors may, however, not expect to witness any benefits from the participants.
Are you interested in being part of a clinical trial? There are lots of hospitals that are probably offering trials. It isn’t just your local general hospital that’s doing this. You can find out where trials are being conducted near you by looking at the trials database at Cancer Research UK. Check out their website to find out more about these trials. Consult your local oncologist/GP to offer local referrals that you can visit.
Find out more about clinical trials and what they entail in this blog from ICON.
2. Ask many questions
Don’t be shy to ask questions. Note any questions down that you want to ask. Visit your healthcare team with an individual that you trust. Make sure you’ve talked to them before the appointment for them to understand your objectives. This will ensure they have a better understanding of what you want. They can help you out during the appointment if need be.
You’d better ask whether what’s on your mind is offered. If it isn’t, ask why not. You can make an informed decision when you understand all aspects of your disease. You can learn all about possible treatments by asking questions.
3. Don’t rush, talk things through
There are side effects to all cancer treatments and drugs. They don’t affect everyone the same way. They have unique reactions to every patient. Talk to your trial team to figure out if the pros outweigh the cons.
Never rush into a decision without critically analyzing the situation if you are offered a trial place. Make an informed decision once you have gathered all the critical information. Discuss this issue with healthcare experts as well as your loved ones. A research nurse should be available to discuss the details with you. Still, you can contact Cancer Research UK on Freephone 0808 800 4040 to speak to one of their nurses. The decision has to come from you. The nurses will only help to inform you about the ups and downs.
4. Don’t let the trial paperwork slow you down
Always carry all paperwork home to read. Note down any statements that require clarification. You can seek clarification when you get back to the hospital. You’ll have to sign the paperwork for trials to begin. Don’t forget that you can stop the treatment in case you have a change of mind. This can be done at any time.
5. Devise a plan
Always have a plan if you decide to proceed with a trial. Planning is great for me. It helps me feel in charge. Well, this is ultimately my body. With that said, just have a Plan B ready in case Plan A doesn’t work out.
6. Assemble your team and build a tool-box
The individuals that will stick with you throughout, including your family, relatives, friends, doctors, workmates, and health care experts are your team. These people are there for you. They offer support and play roles in whichever way possible. Inform them of any needs that you have.
Over the years, I have been building my toolbox. This hasn’t stopped yet. Here are some examples:
• Develop a great relationship built on honesty with your research nurse. He or she will offer support throughout your trial treatment.
• Find ways to deal with anxiety as well as difficult hospital appointments. A complementary therapist helped me develop these techniques.
• Talking is therapeutic. Your clinical psychologist should be a great listener. He or she should take note of your concerns. I can’t even share some of my concerns with my loved ones.
• Grab your close friends for lunch dates while you’re still undergoing treatment
• It’s always great spending time with my family. It’s something that I always look forward to. It’s nice to idle around in my garden.
These boxes are unique. They are personal to everyone and so is mine. My toolbox has significantly helped me deal with the “fear factor”.
7. Hospital visits
Close monitoring is done in any trial. Get ready. Always have someone by your side. Companionship is important. However, don’t bring your whole family to the hospital. Find a book or magazine to read. Tablets and cross-words can also keep you busy. Don’t forget to drink and eat while on trials. There are lots of excellent facilities that you can find in cancer hospitals. You’ll find some great places to eat, a shop, and a place to relax.
8. Keep a personal journal
You won’t easily forget things you’ve noted down. Your trial team will want to find out every tiny detail about your progress every time you go to the hospital. Never forget to note down what you are experiencing. Remember, it’s a trial so they need all the information they can get to help you and others after you.
9. Don’t let fear slow you down!
10. Live your life
Living your life is the most important thing that you can do. It is time-consuming to be on a trial. You have to visit the hospital regularly. Make a plan to treat yourself in-between visits. Do this when you are feeling better. You have something to look forward to whilst undergoing treatment.