In this blog, one of our Community Champions Jane is sharing some of the emotions she felt whilst having treatment and some of the strategies she used to help cope with the uncertainty.
Jane was diagnosed and treated for endometrial carcinoma sarcoma in 2022. She underwent surgery, chemotherapy and external beam radiotherapy. She became a Community Champion to support others who face cancer whether themselves or a loved one. She regularly supports others through the Online Community, reviewing content and by writing about her experiences.
Having a diagnosis of cancer can make things feel overwhelming and out of control and it is normal to feel anxious about what lies ahead. Along with support from family and friends, that the peer support that can be found through Macmillan’s Online Community really helped me. Acknowledging the fear and anxiety, sharing it with others whilst getting support helped.
With a cancer diagnosis, comes uncertainty. The testing itself can be invasive and unpleasant, and then there is the waiting for the results to come back. I knew from the day of my biopsy that things were looking grave, and it almost felt a relief to know for sure and to get a treatment plan to focus on. After cancer surgery there is more uncertainty while waiting for the post op pathology which will confirm the stage and grade and may lead to further treatment.
The fear that comes with hearing about the treatments is very understandable and this is where sharing with others who have had similar helps chip away at that fear. Some of my fears came from how the treatments are portrayed in the media but some came from the very real risks of them. Reliable information is needed to make an informed choice. The risks of late effects can be very real.
Facing something as massive as cancer had an impact on day to day life. It felt like everything was put on hold while there was endless rounds of appointments and treatments.
One of the first times I contacted Macmillan was regarding my job and finances. To be given advice from a financial expert really helped and I would urge anyone in a similar situation to do the same. It meant I could focus on my recovery. Then came the practical arrangements, travelling to the hospital, shopping, even pet care. I loved my job and missed the day to day structure.
Call the Macmillan Support Line on 0808 808 00 00 for emotional support, practical information and financial guidance. The specialist cancer support teams are available to help 7 days a week from 8am-8pm.
You can also post a question in the Ask an Expert section here on the Community.
Cancer and cancer treatments have physical effects, and it can feel like you lose control over your body for a while. Some effects can be mild and temporary, but some can be more severe and potentially long term. They can be unpleasant, embarrassing and at times limit what you can do. It can be hard to face treatments that you know are going to make you feel ill and may cause pain or distress.
For me the emotional effects were huge at the time. It can certainly feel a roller coaster- and if you are reading this and feel the same- then you are very much not alone. Please do reach out. Cancer is scary, treatments are scary and at times it can be easy to feel isolated even if surrounded by others. I have found that the fears and anxiety can remain after treatment and that this is the same for many on the Online Community.
I was also concerned about feeling a burden on others. To reach out and ask for help and support was hard at times. I was worried about how and when to tell people and also causing them to be upset. Just saying the word cancer out loud can be hard, particularly when you can’t say that you will definitely be fine. I worried about missing work and my commitments there.
If you are worried about asking for help and telling others about your cancer, you may find reading the ‘Breaking the news’ blog and the ‘How to ask for or give support’ blog.
For me and many others, this is important. How we look is part of our identity. Cancer treatment can cause changes that are hard to cope with. I used scalp cooling to try and prevent hair loss through chemotherapy, and although I consider it successful- at times I did look really unwell. When you don’t look your best, you don’t feel your best. Emotionally that can be hard. Physically there can be changes. There is the worry that this will affect future relationships.
Read Jane’s ‘Changing faces of cancer- scalp cooling, hair loss and regrowth’ blog to see a visual timeline alongside hearing of Jane’s personal experience with using the cold cap.
These are some of the things that I found helpful when feeling anxious or worried.
Cancer can take away the feeling of being in control and having accurate information about possible treatment, prognosis and options can help. Consent is important too. I needed to have the right to make decisions about your treatment and to be treated with dignity and respect. The best people to talk to about your care are your doctors and Cancer Nurse Specialist but Macmillan can also offer support in many ways.
Practical planning is also important and for me that was what to pack for hospital days, how I would travel and also things like shopping/collecting medication and pet care.
If you also find practical planning helpful, the following information may be helpful for you to read the What to pack for hospital? Blog and the Pet care information on the Macmillan website
Having information about what will happen, when it will happen and information about expected side effects really can help. For me as well, to get the peer to peer support from people who have faced the same is invaluable. However fantastic our oncologists and CNS’s are- it is the experiences of people who have faced the treatments that is so important. One reason that I have openly shared my journey is the hope that it will make people starting out on their own journey, feel less alone.
Read the power of peer support blog and the Online Community can be a part of your social prescription blog to know how effective peer support can be to your wellbeing
This is important too. To know what to expect and to know the red flags and who to contact can provide reassurance, get support, provide medication and potentially at times save your life. The 24-hour cancer line at my hospital got me admitted on Sepsis alert on one occasion but at other times the nurses were able to give advice over the phone.
If you have any concerning symptoms, please call NHS 111 or 999 if you have an emergency.
I think the thing to remember is that cancer is individual, everyone has individual circumstances and life experiences. But you are at the heart of it all and there are people who will support you. The medical team, the support workers, family, friends and Macmillan. It can be a challenging journey but it is not one that you have to face alone. It is important to feel supported at all stages whether you are worried about cancer, have just had a diagnosis, are going through treatment or are recovering.
The whole person is important. Anything that helps you deal with it all is good. Talking, spending time outside, being artistic, meditation, counselling, and spiritual support can help. Just writing down how you feel and be cathartic. I would advise anyone to call the Support Line and to find out about the options available to support you.
Thank you, Jane, for being so honest with us all and for sharing your coping strategies. We hope you found reading Jane’s blog helpful and if you have any supportive comments for Jane, please add them in the box below.
