Hearing a Doctor actually say the words can be a traumatic experience, whether you were expecting it or not. If you haven’t experienced any symptoms and just gone in for a routine check-up, it can come as quite a shock. And even if you realised something wasn’t quite right, cancer is often the last thing we think about.
‘It was a whirlwind, I expected to just be seeing a Dr, but then I was having a biopsy and was told I had cancer. I was alone!’ Leanne
There can be lots of mixed emotions - shock, anger, sadness, frustration, disappointment followed by acceptance, determination and courage and inner strength. Virginia
While the diagnoses is often overwhelming, it is important to remember that research and treatment for cancer has come a long way in the last few years, many cancers are treatable and survival rates are continually increasing.
While many people want answers and a definitive plan of what their treatment will consist of, that is not always possible. Because every body is different, how the cancer reacts and how the treatment effects each person and the cancer can also be different. So while your Dr may mention things like chemotherapy, surgery, radiation, immunotherapy, or stem cell treatment, the timing and amount of these things depends on a range of factors including the type of cancer, how fast it has progressed, its location, your age and overall health. What the Drs want to do next can also depend on how your body handles each step of the treatment in terms of both the cancer and the side-effects,
Over the years, research has shown that different treatments and even different combinations of treatments work best on specific cancers. So while breast cancer is often treated with chemotherapy, surgery, and radiation, for prostate cancer a combination of radiation, hormonal therapy and chemotherapy is often used and melanoma is generally treated with surgery if it is an early diagnoses or immunotherapy/ targeted therapy and possibly radiation if more advanced.
Ask your Drs to be as specific as they can be about your upcoming treatment and if you have access to a specialised nurse they can often be very helpful at explaining things simply and easily.
I had to learn new medical language, I researched terminology for clarity.
While it is tempting to just google everything, be careful. Not all websites have your best interest at heart and some can be misleading. But understanding the new terminology and language used by the Drs is important, and a way you can reclaim some control over the process. Stick to local, reputable sites such as Cancer Australia, the NSW Cancer Council or the Cancer Institute NSW for information on a range of cancers. Also, many cancer types do have their own foundation or organisation with reliable information such as the Prostate Cancer Foundation of Australia or Ovarian Cancer Australia. These sites are generally .org or .gov. Some hospitals/ treatment centres also offer excellent resources, ie the Chris O’Brien Lifehouse can be useful resource even if you are not being treated there. And finally some organisations, such as Movember offer useful information and support services for prostate and testicular cancer.
A good resource to use for those terms you may not fully understand is Cancer Australia (https://www.canceraustralia.gov.au/resources/glossary). They explain things simply and is fairly easy to understand.
Who you tell and how much you tell them, is a very personal decision. While some people are private and chose not to tell many people, they need to be careful that in shielding friends and family, they don’t bear the brunt of the diagnoses alone. On the other hand, telling others you have cancer can also use up a lot of your energy. You may need to pick and choose who you tell and how you tell them in a way that allows you to preserve your energy and emotions for what’s ahead.
‘I was diagnosed with cancer on Christmas Eve - I couldn’t give my kids cancer for Christmas.’ Kim
Try to be as open and honest as you can, which isn’t easy, especially if you are still trying to get your head around everything.
‘I did it all wrong, but there’s no right way,’ Heather.
Be prepared for the questions and don’t feel pressured if you don’t have all the answers. While some people will ask questions as a way of trying to be supportive, others, such as children may need to know to help them process what is happening. Be honest, tell them you don’t know but will find out and get back to them.
Other people’s reactions to your cancer diagnoses may be varied and not necessarily what you expect. Some people will leap right in and want to do anything and everything for you, while others may step back a little. Some people may not know how to respond, and be concerned that they will say the wrong thing, so they don’t say anything. Just try to keep the lines of communication as open as possible, tell people what you do and don’t need from them. And remember that odd reactions may just be their ways of coping with your diagnoses, and try not to take it too personally.
Group chats to keep people updated can be useful. They are a great way to keep others in the loop about your treatment, while not having to make so many individual phone calls. They are also a way for you to share each milestone (finished chemo/ radiation) and ask for help if you need it.
Below are links for organisations that may provide useful information. While some are based on a particular type of cancer, the process of telling others is similar regardless of the type, and they may provide you with some good ideas.
‘How do I do it all – kids, family and a diagnosis.’
People lead busy lives, and adding something as time consuming as cancer treatment on top can certainly be a challenge. But a cancer diagnoses can also change your perspective on things and have you reassess what is really important, and what isn’t. Maybe there are certain household chores that don’t happen as often as they used to because you rather spend time with family and friends, or looking after yourself after treatment.
'I had to get a cleaner, I couldn’t manage.’
While it may be difficult to accept at first, help from friends and family can really make things easier for you. And it makes them feel good because they are able to help you! Letting them help with meals, shopping, cleaning and driving the kids to school or soccer will take some of the pressure off.
There are transport options available for Hawkesbury residents having treatment at surrounding hospitals such as Blacktown, Nepean and Westmead Hospitals. Peppercorn Transport offers a door to door service Monday to Friday which is free to cancer patients receiving treatment. This can be especially useful for those undergoing radiation treatment which, in some cases, is everyday for a number of weeks. You can contact Peppercorn on 02 4504 7022 - email@example.com - Community Transport - peppercorn.org.au. If you haven't done so already you should register your interest with Peppercorn Transport by telephoning 0245 047 022 or by emailing firstname.lastname@example.org.
This is an area that can be stressful. Many people need to take time off from work because of their treatment which can make it difficult to meet current and additional expenses.
‘Money became tricky with out of pocket expenses, specialist fees, scans and surgery.’
It’s a good idea to look at all the options available to you, such as the NSW Cancer Council https://www.cancercouncil.com.au/get-support/financial-assistance/ financial assistance.
Check to see if your Super has Loss of Income Insurance or allows you to access some money on compassionate grounds.
If you have children in private schools, you may be able to have school fees reduced or waived.
If you are unable to work due to your diagnoses, you may be eligible for disability payments through Centrelink.
Each person handles a diagnoses differently, but it is important to realise that reaching out to someone who has had cancer or a support group, can help you connect and feel less alone. While there are most likely thoughts running through your head that you do not want to share with family, someone who has been on a similar journey is more likely to understand your thoughts and fears. It’s also reassuring to talk to others about their treatment and how they managed or coped. Ensuring you have someone to talk to about your journey is especially important if you live alone.
‘Living alone is challenging, I have no-one to talk to’ Pam
NSW Cancer Council offers a range of services that help you connect with health professionals, others going through cancer and counsellors Get Support | Cancer Council NSW
Self-care is extremely important during treatment. It’s not about being indulgent (although a little of that is always nice) but more about prioritising you and ensuring you look after your body and mind while undergoing treatment. Most treatments will impact you in some way so ensuring your body has time to recover is really important.
Below is a list of items that people who have gone through cancer treatment have suggested.
- Silk pillow - hair loss can make your scalp sensitive.
- Soft towel - skin can be sensitive.
- Moisturize often –chemo can dry your skin and radiation can cause changes in skin texture
- Crucial during radiation treatment (before, during and after)
- Side pillow for sleeping depending on surgery location.
- Sunscreen - apply daily, even for short walks.
- After breast surgery - bras without wires, post surgery bras.
- Gum – for dry mouth caused by chemo
‘It’s really is like a fog that rises and disappears over hours.’ VS
Being aware of this can be a relief and allow you to put things in place to help you manage. A diary and notebook are essential tools for cancer treatment. They allow you to keep all the dates and appointments in one place so you know what you need to do from one week to the next. Use the notebook to write things down that you need to do while your mind is clear and that will help you when your ability to concentrate fades. Write down those shopping lists and anything else that you can to take the pressure off your memory.
Click here to see Jane’s tips for managing the medications.
Studies have shown that exercise during treatment can help you deal with the side effects, enhance your recovery and generally make you feel better physical and mentally. On the tough days, this may mean just walking around the house. While on your better days a nice walk around the neighbourhood can make a big difference to how you are feeling.
Whatever you do, it is important to listen to your body and pay attention to what it needs, including getting plenty of sleep and rest when needed to allow your body to heal.
For more information on different types of exercise and how to get started, click here Exercise During Cancer Treatment | Cancer Council NSW
It is important to remember that every body is different, and every body does not necessarily react the same way to the cancer or the treatment. Try not to compare your diagnoses and journey to others. In saying that, it’s ok and recommended to ask other people on a similar journey questions, but use their answers a a very rough guide to what might be true for you. This journey is tough enough without you getting impatient or angry with yourself for taking a little longer at any stage along the way.
It is also important to acknowledge that diagnoses and treatment have substantially progressed in the last 20, 10 and even 5 years. So when someone tells you about their Aunt Mable who had the same type of cancer 20 years but didn’t make it, don’t take it personally. Firstly, they are just trying to connect with you in some way. And secondly, that was Mable’s journey, and while it is sad, that was 20 years ago, and so many things have changed since then.