Wednesday, 15 June 2016

Joining the dots in cancer support.

As some of you will know I am a cancer survivor. I was diagnosed with womb cancer at the end of 2009 and had a hysterectomy followed by chemotherapy and then external radiotherapy.

Anyone who has had cancer will tell you that it's tough to deal with. It is something we all fear and according to statistics, by 2020, 1 in 2 of us will be diagnosed with it.

Cancer changes your life forever and only those who have gone through it themselves will ever truly understand. Having a good support network around you can really help to get you through the dark times, and believe me there are a lot of them.
Whether that support comes from close family and friends or from being part of a support group it all helps to make us feel less alone and frightened.

Sadly, not all cancer patients have a support network. Some live alone or don't have family members close by; some live in isolated or rural communities and are unable to access support groups.

Social media can help fill this void and is being used by increasing numbers of patients to help them through their cancer journey.

Sharing your story on Facebook, Twitter or Instagram can give you back some control at a time when it often feels like you are powerless against this demon called cancer that has taken over your life.

I certainly wish that I had thought of doing it when I was diagnosed but I wasn't as social media savvy as I am now and the thought never crossed my mind. It is certainly something that I would recommend as it gives you the chance to look back over your journey and realise that the bad days were not as bad as you thought they were because you managed to survive them, didn't you?

Having been left with several long term side effects from my treatment means that my cancer journey has no real end. Due to the fact that I had no follow up appointments (long story!!) even though it is now over 6 years since I was diagnosed, I have never heard the words " There is N.E.D" or "You are cancer free, congratulations" .

Support for many cancer patients seems to end once treatment does and that can mean that many of us struggle to get our lives back on track. Trying to access extra support can be hard; that's if the support is there in the first place. NHS and council health service cutbacks mean that in some areas of the UK the support available is patchy if non existent.

Again, social media has a role to play here and there are many small and local support groups who work online to help and support cancer patients.

Through my own organisation, Womb Cancer Support UK, I have realised that many patients value the opportunity to access support in a way that means they can choose to remain somewhat anonymous - they don't have to leave home and mix with other patients if they don't want to. WCSUK has a private chat group on FB and many of the women will use it a kind of release valve to offload in a secure space - often talking about things that they don't want their family to know about because they don't want to worry them.

Physical care is only part of cancer care - but sadly it seems to be the bit that the medical profession focus on. Emotional and psychological care is very often lacking yet this can be the areas that take the longest to heal, if they ever do.

We need a much more holistic approach to cancer care;  patients who are able to access all forms of support make a much better recovery from their cancer experience. This kind of approach needs to be available to every cancer patient.
It need not cost much money - sometimes it's just a case of thinking outside the box, These services often already exist but many cancer patients are not aware of them and seemingly many GP's are reluctant to refer patients to charity organisations who may offer this support.

Everyone who is involved with cancer care and support needs to be working together for the benefit of cancer patients. Until this happens, many patients will struggle to cope and will not have the support they need to fully recover from their cancer journey.

We need to join the dots and give cancer patients the support they deserve.

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