An Incurable Diagnosis and Palliative care – Managing the News

We are sorry that you have been told your cervical cancer is incurable. Facing an incurable cancer diagnosis can feel overwhelming and very scary and you will be experiencing a range of emotions and thoughts.

Being diagnosed with incurable cervical cancer does not mean that you need to stop doing the things you enjoy in your life. You may want to think about what makes you happy and what is important to you. This could be spending time with your family or planning trips to create lasting memories with your loved ones. Try to make sure you prioritize activities that make you feel good. This is very important because it can offer you a chance to do something that makes you happy and it can help support your loved ones. Some women see incurable cancer as a chance to reassess what they want out of their life and they often choose different lifestyles as a result. While others may decide they want to change as little as possible. There is no right or wrong way and you will know what feels best for you.

At the moment, getting support and information, be that for the mind or body, is really important; it’s not a luxury, it makes sense. Your family and friends may also need to seek support as well.

In this section we will provide you with information on different places to find support and practical tips on how to make decisions and plan but also to ensure you can do the things you want. We will provide you with links to other organizations that can offer you specific support according to your own needs.

Getting Support for You

At the moment you may need different types of support both physical and emotional. Make sure you ask for help as and when you need it (no matter how big or small the help you require is). You can seek support from family or friends or your healthcare team. You may not need anything immediately but this section can direct you in case you need support in the future.

You can be referred to any of the following services via the hospital where you received your treatment or your GP:

  • Pain clinics
  • Counselling
  • Physiotherapy
  • Occupational therapy
  • Social services
  • Dieticians
  • Chaplaincy
  • Complementary therapy.

You can also use local support such as your District Nurse and where applicable a Community Nurse or local Hospice Nurse. If you have a good relationship with your Gynae-CNS or your GP please do talk to them about your options so that you can get more support as and when you need it.

Referral to a Hospice

You might want to consider a referral to your local hospice or community palliative care team. Don’t be concerned by this, palliative care is about a holistic approach to care, for both mind and body, that can be given at any point after diagnosis.

Whilst it is true that some people choose to spend their last days in a hospice, people who are active and well also benefit from therapeutic services that are given to out-patients such as massage or counselling.

At a hospice you can access pain management teams who are experts in helping you to live life to the full.

The hospice can:

  • Provide you with a team of highly specialised professionals including specialist nurses and doctors who will support you and answer your questions about treatment.
  • Help you access hospice nurses who are very experienced at supporting women and their families and can help with issues, such as managing your relationships, which can understandably be strained at this time. Your Gynae-CNS or palliative care team can assist in facilitating conversations if you or your family are finding this difficult.
  • Offer the opportunity for you to visit for the day and they may also have a ‘Hospice at Home’ service that provides support in your home and this also provides respite for family/carers.
  • Help you find other services such as financial or social support.

Resources


Physical Support

 

You may have some physical symptoms that are caused by your cancer. These can usually be managed with the help of your health care team. It is difficult to give you a full list of symptoms that you may experience because everyone is individual and the symptoms that one person reports may be different for someone else. Generally more pain, fatigue, loss of appetite, or sickness should be monitored.

Listen to your body and contact a health care team if your condition changes or you are worried or concerned.

Your health care team will want to know how the symptoms you’re experiencing affect your life and if anything makes them better or worse. There are options to help you have the best quality of life – the important thing is to report any symptoms that are causing you discomfort or preventing you from doing things. Your team can often work with you to minimize your symptoms to ensure that you remain as independent as possible and that your quality of life is the best that it can be.

Complementary Therapies

Your local cancer support centre or hospice and some hospitals will have a range of holistic therapies available, free of charge to people undergoing treatment for cancer. Complementary therapies can be used alongside other medical treatment you may be receiving.

These treatments can help you to relax, ease tense muscles and help you to return to a sense of equilibrium at this difficult time. They can also help to manage some of the physical symptoms. Your health care team should be happy to refer you to these services.

There are a range of therapies available which should be delivered by a qualified therapist, these include:

  • acupuncture
  • aromatherapy
  • massage
  • reiki
  • reflexology

Spiritual Support

If you have a spiritual belief you might find that this becomes more important to you. You may be thinking about what happens to you after you die. At this time, many people find the support of their religious community comforting. You can contact a local minister or religious leader for spiritual support. It does not matter if you have not previously had any involvement with your local place of worship, they will usually be happy to help and can provide spiritual guidance and support. Hospital chaplains are also a great resource if you are an inpatient. Some women who face incurable cancer find they may experience a loss of faith, if you are experiencing this do seek some support to discuss how you are feeling.

Spiritual beliefs do not have to be connected to religion, if this is your situation you may find talking to friends or family who share your belief system a useful source of support. Your health care team will also be able to help to signpost you to the relevant person to suit your preferences and wishes.

Managing your Lifestyle

Despite your cancer being advanced it does not mean that your health will deteriorate immediately. Women with incurable cancer can live life as normally as possible depending on their individual situation such as the type of treatment you require to manage your cancer and any symptoms you may be experiencing. This may mean you may require support from health/social care or through adaptations enabling you to lead as independent a life as possible.

There may be some adjustments to be made to your lifestyle. For example, you might find you get tired more easily and breaking any planned activities into small chunks in case you need a break. Planning more restful activities can be helpful but let your body guide you as to what you can and cannot do. Over time it is likely that you will have increasing health issues (both physical and emotional) to manage, and you may need more treatment to help with controlling these issues. Your health care team will be able to help you choose the right treatment.

Remember to tell your health team about any new symptoms so that they can help you manage these. Your health care team may refer you to physiotherapy and/ or occupational therapy services, these specialists can recommend exercises, help with mobility aids and manage breathlessness and suggest adaptations within your home that might help you and your family.

Going to Work

Some women facing an incurable cancer are able and wish to continue working. This is entirely up to you and your own situation. Working can be important because it provides stability, normality and an opportunity to think about other things in a safe environment. Do talk to your employer about the type of support you require, this may change over time. Your employer may be able to tailor your working hours or the nature of your work according to your needs.

Let your body be your guide, if you feel things are not manageable do make sure you seek support.

You and Your Partner

Intimacy with a partner may be a very important thing for you right now. It’s just as natural now as it’s always been to have these feelings. The chemicals your body releases when you are intimate or receive affection from another person make you feel good and also feel close to your partner. Some of the treatment you have had may make this challenging. Please talk to your clinical nurse specialist if you need support or advice with this.

Those facing incurable cancer and their loved ones may feel isolated which can lead women to feel distanced from friends, family and colleagues, it is normal to find it more difficult to tell your family how you feel, your thoughts, fears and feelings to try and protect them at this difficult time. So it is important to get the support that you need at this time from people you feel more comfortable talking to or your health care team. Take time out to care for yourself and ask for help when you need it.

If you want to talk to other women in a similar situation as you, you can find support on our website.

Making Decisions and Plans

 

Intimacy with a partner may be a very important thing for you right now. It’s just as natural now as it’s always been to have these feelings. The chemicals your body releases when you are intimate or receive affection from another person make you feel good and also feel close to your partner. Some of the treatment you have had may make this challenging. Please talk to your clinical nurse specialist if you need support or advice with this.

Those facing incurable cancer and their loved ones may feel isolated which can lead women to feel distanced from friends, family and colleagues, it is normal to find it more difficult to tell your family how you feel, your thoughts, fears and feelings to try and protect them at this difficult time. So it is important to get the support that you need at this time from people you feel more comfortable talking to or your health care team. Take time out to care for yourself and ask for help when you need it.

If you want to talk to other women in a similar situation as you, you can find support on our website.

There will be decisions to be made about how you want the end of your life to be. This section will provide information on how you can start to plan and what sort of things you might want to think about.

Treatment Plans and Priorities

The treatments you want now may be different to the treatments you would choose if you become more poorly. It can be helpful to plan your care with your medical team and your carer. There may come a point when you don’t want any more treatment or there are certain procedures you would not wish to have. Although this can be a painful process, some women actually find it very therapeutic to make plans when they are well enough. Making sure your wishes are met is part of Advance Care Planning which means you will discuss what you want with your health care team – your decisions will be documented.

There is also a document called Preferred Priorities of Care (PPC) which can be a written or verbal agreement which tells other where you would like to spend your last days of life (this can be home, hospice or hospital). You can discuss this with your health care team.

‘Putting your House in Order’

At the moment you may be making decisions about different aspects of your life. You may also want to think about organising your personal affairs. This includes thinking about practical issues such as:

  • your bank account
  • mortgage or rent
  • what sort of funeral you would prefer
  • what might happen to your treasured possessions.

Sometimes when people die, family and friends aren’t aware what that person really wanted, but organising this side of things can ensure you live on in people’s hearts and minds in the way you wish.

In the next section we will give you a starting point and suggestions of how you can do this. There will also be links of other organisations that can help you further. This can be a painful and difficult process, so do ask for help and emotional support from your family and friends if you need it.

Topics in the next section:

References

Worried About it Coming Back?

  1. Pistrang N, et al,. 2012. Telephone peer support for women with gynaecological cancer: benefits and challenges for supporters. Psycho-Oncology 22(4), 886-94.
  2. Johnson R.L, et al,. 2010. Distress in women with gynecologic cancer. Psycho-Oncology, 19 (6), 665-668.
  3. Macmillan Cancer Support website: The emotional effects of cancer http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Emotionaleffects/Emotionaleffects.aspx. Accessed 28.07.13

If your Cancer has Come Back.

  1. Cancer Research UK website: http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/complementary-alternative/research/complementary-and-alternative-therapy-research. Accessed 14.06.2013

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