Things I'd Wish I'd Known (1)

 

“I wish the team had told me that the recovery process would be ongoing”

At the end of active treatment for Primary Breast Cancer, we are all told to go and pick up our lives where we left off, but we are not given any clue how to go about it. In our BRiC Sunday Discussion we asked what people would like to have known or discussed with their team afterwards, if they’d been given the opportunity. The list is quite extensive;

• Detailed discussion about reconstruction options

• Psychological impact of a quick diagnosis, followed by complications

• What now, how to move on?

• How to cope with anxiety, depression and cognitive decline

• Why are MRIs not standard monitoring?

• How to process what has happened to you

• How your sex life might drastically change, becoming difficult or impossible

• Secondary cancer – risks and what to look out for

• How to manage fatigue and menopausal symptoms

• That the recovery process is ongoing

• The blue dye injected for my lumpectomy took over two years to fade

• More information about sentinel lymph node biopsies

• That I would probably never feel the same again

• Detailed information about surgery

• Support and awareness around neuropathy symptoms

• Information about a more holistic approach to being healthy

• One key person for support, rather than Consultant, BCN, Oncologist, etc.

• Physiological problems that can occur years down the line

• Information about PIP (Personal Independence Payment) which supports those of us left with disabilities

• Numerous ongoing side effects of all treatment

• How bad nerve pain could be from Axillary Node Clearance

• The possibility of more surgery and extended treatment

• Failure post-surgery to keep in touch with next of kin

    As you can see the queries and issues are varied and personal, ranging from questions about the treatment we’ve just received, to how to move forward and recover, and a wish to air complaints when things have gone wrong. Most of them are not the kind of questions you would want to bother a busy Breast Care Nurse with, but still, those unanswered thoughts play on our minds and prevent us from having a better recovery.

    The other issue that can affect us is that too much information at once can be a problem for people who are already struggling at the end of treatment. When you are only just coping with day-to-day tasks, your mind just isn’t ready to absorb lots of new information. Trauma can also make it difficult to speak up for yourself, especially when things go wrong with your treatment plan. Feeling completely abandoned with nowhere to turn can lead to depression, anxiety and suicidal thoughts.

    What is clear from this discussion is the complete lack of a support pathway. I floundered around for about six months post treatment. I sourced my own counselling through a local cancer charity and when that didn’t help as much as I thought it might, I drifted into awful, disruptive anxiety followed by deep depression.

    "I only found BRiC by chance, through a friend of a friend, and it has been my go-to support for nearly two years. Wake up at 3am with a question? No problem, the ladies on here would have me feeling buoyed and listened to by 7am! Had a bad day? Wednesday Wobble gave me a safe outlet where I wouldn’t offend anybody! The concept of this group, although based on rather complicated science, is amazingly simple. Mostly, we need somebody to listen, empathise and maybe have some practical input from personal experience. It makes such a huge difference when we feel scared and alone."

    So, what can be done to give everyone the opportunity to access this kind of support, without having to battle for it when they are at their lowest point? What is the point in the NHS spending thousands of pounds on treatment to save our lives, only to have us crumble into a traumatised heap afterwards? It seems their expectations of our recovery are at best optimistic and at worst negligent. And the ones that do care have no access to funding for us, even if they do want to help. A much different approach is needed to guide us and our families as we embark on the journey into our new, vastly altered lives.