These are just some suggested subject areas. You may have other areas that you wish to include:
Diagnosis; Options; Practical help; Hospital vs home; Follow up; Support.
When Doctors speak in "gobble-di-gook..."
If you are having treatment and the doctors start spouting some gobble-di-gook.. ask them exactly what they mean! Some doctors forget who they are talking to and start talking in medical lingo.
If they have explained it better but your still unsure, ask for it to be written down so you can read it at home and make sense of it! (This is why the MNINC Publication is amazeballs)
Remember, this is your treatment, your life and your survivorship (every day!)
What to ask about Radiotherapy..
Here are some questions you might want to ask your doctor or nurse if you`re going to have radiotherapy! BTW it`s a good idea to write their answers down so you can review them again later on!
- How can radiation therapy help?
- What kind of radiation therapy will I get?
- How many weeks will my radiotherapy last?
- What kind of side effects could I expect during or after radiotherapy?
- Will these side effects go away after radiotherapy`s over?
- What kind of late side effects should I expect after its all finished?
- What can I do to manage these side effects?
- What will you do to manage these side effects?
- How can I learn more about radiation therapy?
Don`t go it alone!
Consultations with oncologists can be scary :(
I find it really helps to write down all my questions and read them out, that way I avoid wishing I`d asked a question after I`d left (sorry if you already know this!)
Also, take someone with you if you can! Don`t go it alone!! I RECOMMEND THIS - especially for any results. It`s suprising how two people can hear things differently so its really good to have someone to talk things through with (and to compare notes with) afterwards.
What`s the goal of cancer treatment?
Wherever you are on your cancer journey, don't be afraid to ask questions (and don't be afraid to get a second opinion!) It`s YOU who`ll be having the treatment/procedure/surgery and you`re the one who needs to feel comfortable about whats going to happen (rather than just accepting it!)
I suggest you prepare a list of questions for each appointment and if you don`t understand anything, ask for it to be explained until you do!
One of the questions we all want answers to (but may be abit afriad to ask) is what`s the goal of cancer treatment? I know this may seem like "durrr" but it`s not always as clearcut as you`d think! It`s probably one of the hardest questions to ask, but it`s an important one, as you`ll need to make decisions about your treatment with your team, based on this answer.
The way I understand it, having treatment may be used to achieve different outcomes depending on your type of diagnosis:
- Cure it completely
- Destroy the cancer cells to the point they`re no longer detected and wont grow back!
- Control it
- Keep it from spreading or slow it down
- Manage cancer symptoms such as the pressure of tumours or pain
- Help make people comfortable and manage their symptoms (palliative care)
However, it`s important to know what you hope to achieve with your treatment plan, so ask your oncologist questions!By writing them down and going through as a check list, it`s a great way to help you understand, and will also help your team be reassured you know what`s happening, especially if you`ve taken time to work through your list together! Good luck xox
If you are recommended to have surgery, find out about the benefits, risks and possible side effects. Needing any type of surgery is a daunting thing! By knowing more about what is involved may help you make the decisions that are right for you! Sometimes surgery is the only option or may need to be part of a treatment plan. Do not be afraid to ask questions... it is better to be informed and is the responsibilty of any surgeon, to ensure you understand what is involved, in order for you so sign the consent form, which is a legal requirement.
- Why do I need an operation?
- What are the chances of its success?
- Are there other options for treating this type of cancer?
- What about anaesthetics? Are there risks to me?
- Will you be the operation surgeon? How many operations like this have you done?
- What will you be doing in the operation? What will you be taking out/why?
- How long is the operation?
- Will I need blood? Can you tell me about transfusions? Are they safe?
- What about after? Who will look after me in recovery?
- What about pain/drains etc? What can I expect?
- Will my body work or look different?
- Will I need to consider reconstructive surgery at a later date?
- How long does it take to recover and get my life back to normal ?
- What if I chose not to have surgery?
- What are the chances of surgery curing my cancer? Will I still need chemotherapy or radiotherapy?
- Do I have time to consider my options or get a second opinion?
When diagnosed with any serious illness, there are many questions that may arise. A lot of them may surface out of fear. It is important they are addressed as quickly as possible so you can take time to process your situation and become proactive in your treatment options
- What does this diagnosis mean to me?
- Do I have any treatment options?
- What are the benefits of treatment?
- What are the risks?
- Are there any long term side effects?
- Will it affect the way I live?
- What about children and fertility?
Please do not be discouraged if you don't get all the answers, as you may need to start a treatment program, be monitored and re-assessed. Do ask your team any questions again, if
you feel it's necessary.
Modern medicine is advancing all the time and your medical team will be aware of the most appropriate options for your diagnosis. These may seem scary; however they have undergone a rigorous testing process in order to be regulated for use. There is a comprehensive resource of information available, so do ask and be guided by your medical team, or visit one of our links for further reliable information. Try to avoid searching un- reputable sites for information as these are generally not helpful and can make you confused and unsure. If you have any reservations, it is always best to talk this over with your specialist nurse or consultant.
- With treatment, what will happen to the cancer?
- Will I be able to live a normal life after treatment?
- How will I be monitored?
- What about the risk of infection/swine flu etc?
- How have others reacted to treatment in a similar situation?
- Can I stay at home or do I need to be in hospital?
- What if there is a relapse or my treatment needs more of a boost?
- What other treatment options are there?
Sometimes, medical facilities are under pressure because of the volume of work. This is not your problem! It's important you are given explanation, and time, to understand your situation and the information given to you. This is YOUR life... your body! If, for any reason, you haven’t understood (and that may be due to the medical words used) or overwhelmed and hurried, do make your team aware of this!
There may be a range of investigations that need to be performed as part of diagnosis, assessment or monitoring. No investigation will be requested unless your team feel it necessary. It's perfectly reasonable and normal to feel nervous and slightly anxious, as this is not generally something you are familiar with!
Although highly trained and skilled, professionals may need a gentle reminder that this is not something that you have dealt with before, and should be receptive to your feelings.
- Is this investigation necessary?
- Can I avoid having it done?
- Will it hurt?
- What is involved with the procedure?
- Is sedation an option?
- Will it need to be repeated and if so how often?
- Will I need a central line or something similar?
- What are the benefits?
- Will I need blood or platelet transfusions?
- How safe are they?
Investigations can become a regular routine in your treatment program. You will find different ways to approach each and more information can be found in our other areas of ‘Coping with Cancer’ If you have hints and tips that could help others, please contact us
Being in hospital
There may be occasions you will be in hospital. It could be part of your treatment program, investigation or support. Taking something familiar is always a good option as this gives you a sense of your own space (even if it's just a photo)
If you need to be a day patient/in patient:
- What can I bring?
- Who can visit me?
- What are the visiting hours?
- Do my family and friends need to take precautions? (re hand washing/ be in good
- general health)
- What about food and eating?
- Is there a television?
- Can I bring my mobile phone?
- Is there laptop or internet access?
- How long will I need to be in hospital for?
- What support services are available?
Staying at home
Support services in the community have increased and there are many organisations that can help (see our links)
Your GP will normally liaise with your Consultant if you are receiving treatment or being supported at home. There are a range of professionals that may also be involved in your care: District nurses; Occupational Therapist; Community Physiotherapist; Macmillan nurses and social workers; Marie Curie; Clic Sargent. Ask your Team for more information or discuss the support you may need.
- Can I stay at home whilst receiving treatment?
- Who will support me?
- What organisations are available in my area that can help?
- What about transport to hospital if needed?
- How often will I receive care?
- What kind of time frame are you talking about?
- What happens after treatment?
- Why has this happened to me?
- Can you tell me about follow up care/what's next?
Modern hospice facilities are adapting and expanding the range of facilities and support on offer for members of the community who are seriously ill, as well as supporting people who are life limited. This may be Complimentary Therapy; Physiotherapy; Aqua therapy; Counselling, Social Groups, Day care. Do not be put off by the word 'hospice' as they may help focus on wellness and support your ability to retain your identity and sense of self.
We hope you have found this section useful. If you would like to contribute to the coping with cancer section, please contact us