So you have a new sidekick called Breast Cancer who you just can’t shake off. This new sidekick follows you everywhere, constantly at your side, whispering scary things in your ear, clutching your heart, shaking you by the shoulders, sitting on your chest, distracting you every minute of the day and waking you up at night. And the whirlwind begins: hospitals, doctors, surgeons, oncologists (now there is a person you hoped never to meet in your life), appointments, scans and tests.
It can feel pants. It can feel crap. It can feel horrible. It can feel unfair.
I know that everyone has their own way of taking the news, absorbing it, processing it and working out what it means for them but if you are open to advice, pop the kettle on, make a nice cup of (green) tea and here are my top ten things to think about at this stage:
1. Relax. Take a deep breath. Everything I have read on breast cancer recovery has impressed upon me the need to relax during all this crap. Yes it can feel impossible to relax when you can barely breathe, but relaxation will help get through this detour in your life. Take a look at the section on relaxation.
2. Have patience and take each step at a time. It can be a long haul getting through the treatment for breast cancer. If, like me, you are used to ploughing through life in the fast lane then be prepared for life to slow down – welcome to the crawler lane. Start learning the art of patience now. Think of it a bit like a Toblerone chocolate bar. Break down the treatment stages into manageable chunks and deal with them one at a time as and when you get to them.
3. Trust. You will need to put your trust in your breast surgeon, oncologist, chemo nurses and radiography nurses. But do not be afraid to ask questions and to seek a second opinion if you feel that you need to.
4. Take back some control. Yes your life is now in the hands of doctors, oncologists, breast surgeons, radiographers and a whole host of other people you will meet over the coming months (plus plenty more behind the scenes) but take control where you can. For me, part of the scariness of diagnosis was the feeling of losing control over my life. But I managed to regain an element of control by getting myself into organise-mode and preparing as much as possible for each stage of treatment. (One thing to remember at this stage is that if you have health insurance or critical illness insurance – now is the time to dig out the policy and give them a call to see if you are covered.)
5. Medical appointments:
a. Take someone with you. If you are reeling from your diagnosis then you won’t take in a word of what anyone says to you at your subsequent appointments. Someone else can listen for you and make notes.
b. Take a notebook and pen so that your companion can make a note of everything that is discussed during the appointment and you can read this at home when you are feeling calmer.
c. Go prepared with a list of questions – don’t be scared to ask anything that you are worried about. Make a note of any questions/concerns that you have as and when you think of them because you will forget them as soon as you have thought of them – your head is still reeling from the news of diagnosis and there isn’t much room in there for anything else just now.
d. If help is offered from the hospital then accept it. Most hospitals give you a nominated breast care nurse who is a point of contact and support for you from diagnosis and through treatment. If you are given the contact details for a breast care nurse then do not be afraid to contact her with any questions or concerns.
6. You are the no. 1 priority now. Now is the time to put yourself and your own needs first for a change. It is ok to be selfish and think of yourself. Yes, you can (and should) have a mid day nap on the sofa. Yes, it is ok to tell people to sod-off. Yes, you can ask for help.
7. Ask for, and accept, help from friends and family NOW. It is an alien concept for some us to accept or ask for help, but you will need help and now is the time to adjust to this. Everyone who offers you help really means it and wants to help so don’t feel embarrassed or uncomfortable in accepting it.
8. Rest. Don’t hesitate to take a rest – put your feet up, take a nap or sit down for a cuppa. And DO NOT feel guilty about it.
9. Do NOT Google breast cancer. There is an overwhelming amount of information online about breast cancer treatment, different cancer drugs, survival statistics, medical terminology and so on. Some of it is quite scary and startling, some of it is out of date, some of it is incorrect, some of it is not relevant to you and some of it is just rubbish. Stick to the well known, up to date, recognised websites (take a look at the Useful Links and Resources section.). And don’t feel any pressure to find out more information about your diagnosis now – it’s perfectly OK to take your time and avoid all websites, forums, books, patient leaflets and anywhere that talks about breast cancer and its treatment until you are ready.
10. You are not alone. If you are feeling up to it and you want to read about the breast cancer journeys of some amazing women there are some excellent blogs out there. I have popped a list of some of these blogs in the Useful Links and Resources section. Reading these blogs make you realise that you are not alone on this journey, and that there are so many more women just like you. Just a word of advice about reading blogs and joining chat groups, forums and so on if you are feeling a bit scared and overwhelmed at the moment. Whilst I do not talk about statistics, grades and stages of cancer, survival rates and such things, some of these blogs do discuss them. It is also worth remembering that everyone has a different breast cancer story: there is more than one type of breast cancer and there are many different treatment plans. So do not compare your diagnosis and treatment plan with those you read about, or with those people whom you meet along the way.
Hopefully this website can help you a little bit as you go through it. But you can do it. You’ve got this. I wish you all the very best. x
HELPFUL RESOURCES AND MORE INFORMATION
There is a lot of really helpful information available to help you through your breast cancer treatment. Resources available to you include:
1. There are A LOT of websites providing information about breast cancer treatment. I have popped a list of super-helpful websites and links in the Useful Links and Resources section of this website.
2. Throughout this website I direct you to online resources which provide more detail about each particular topic.
3. Ask your chemo nurses and oncologists any questions at any time.
5. Local cancer centres often have drop in sessions for breast cancer patients and sometimes telephone helplines – ask your GP or breast care nurse for more information.
6. And if you want to connect with others going through breast cancer treatment then there are plenty of ways to do this (see the section You Are Not Alone: Groups and Online Forums).
7. The absolute best place to get advice on being diagnosed with and going through breast cancer is to get a copy of the book “The Complete Guide to Breast Cancer” by Professor Trisha Greenhalgh and Dr Liz O’Riordan (breast cancer professionals who have also had breast cancer). Their book is full of helpful information about going through breast cancer and understanding the medical side of things.
8. Glossary of breast cancer terminology – An excellent A to Z list of terms and words you may come across during your breast cancer journey, and what they mean (on the Breast Cancer Now website).
9. If you would like to read more information about your diagnosis, such as what the terminology means, the types, grades and stages the have a look at this Breast Cancer Now section on diagnosis. And for iInformation about breast cancer treatment – more information about diagnosis, tests, staging and grades of breast cancer and treatment then you may wish to download (or order a hard copy to be sent to you in the post) the Breast Cancer Now Booklet called The Best Treatment Your Guide to Breast Cancer Treatment.
“This booklet sets out the standards of care that women undergoing treatment for early breast cancer can expect in England and Wales. It explains the diagnosis and treatment of early breast cancer, which is breast cancer that has not spread beyond the breast and armpit lymph nodes. It talks through the care that women diagnosed with breast cancer may experience.”
Note that this booklet goes into quite a lot of detail about each step of the process from diagnosis onwards and is an excellent resource if you are looking for information at that level of detail.
10. Here is an excellent article called Patient Advocacy: Understanding Your Illness by Marie Ennis-O’Connor from the Patient Empowerment Network which gives a list of things to think about after receiving a diagnosis.