We are hearing the word isolation being used more frequently these days. It is a word that has been associated with cancer for some time, but now we are more aware of our mental health it is being used in that area too. I am finding it very ironic that we live in a time when we have never had more ways of communicating with each other! How can we feel emotionally and socially isolated with so many people around us? We all deal with things differently, and face unique challenges daily. Although we are not the only one to have these issues it feels like we are. Self doubt can creep in very quickly and before we know it we begin to feel detached from everyone.
I can speak with experience regarding the relationship between cancer and depression. My friends and family were as close as they could be, yet there were times when I just wanted to be alone. Suddenly I had nothing in common with my friends as I was the one who was sick. How could they understand what I was going through? I couldn’t see any way out with incurable cancer and constant problems caused by my treatment. Very quickly my mind wouldn’t switch off and I have had to take sleeping tablets ever since. Things felt worse and I was diagnosed with depression. How could this all happen to me? Someone who had very little to be concerned about for most of my life! I don’t know but it did, and if it happened to me it can happen to anyone!
Since my many years of cancer experience, we have thankfully recognised the impact that cancer is having on our mental health. However my concern is like many other aspects of it that we just don’t have the resources to help. I believe that our mental health should be discussed as much as our physical health. If the issues were picked up earlier we may not need such drastic interventions, further down the line. An identical issue to earlier diagnosis of cancer.
How can we help? Sometimes just listening is enough. But what when it isn’t, can we understand the signs when people are really struggling? I’m not sure that most of us would. Not becoming too emotionally attached is difficult also. Something that happens very easily when we just want to help. But there can be consequences for our own health and wellbeing if we are not careful. I have many wonderful friends in the cancer sector, both on and offline, working to help others with very little thought for themselves.
There can be a cumulative impact on us that we don’t feel, but after a time it can surface in our health, physically, emotionally or both. Very few of us are officially trained, and we consider that all we are doing is sharing our experiences. But for the people we are communicating with they may want more. Slowly but surely becoming a drain on your personal resources. This is where things can become very tricky! Please read the below personal experience of a good friend of mine who is very experienced in the cancer world.
“I was introduced to a young lady who had xxxxxxx (have had many such connections in the past). It’s a long story but suffice to say she was the only person I have ever met who literally had nobody. She was living in temporary accommodation in Central London. Her treatment never went well and as a culmination of many factors, being ill, being alone her mental health suffered. She could act very erratically and wasn’t thinking straight, she managed to alienate the lady from xxxxxxx who was helping her – had complaints from her neighbours, didn’t get on well with the medics. She started to call me daily at all hours. I literally pleaded with the organisation to get her help but they were not set up to deal with mental health issues and said I should cut ties. I couldn’t do that. Anyway, in the end she had nobody, she asked if she could visit me. I just didn’t know what to do, and I have a young family so I said that wouldn’t be possible. She called me continually, at home, at work, at night and I distanced myself and stopped answering the calls. I then found out she had died, all on her own. Words cannot describe how deeply that affected me, I was so, so upset and it haunts me still. There is such a huge void in the treatment of cancer; we treat the physical symptoms but not the mental health aspects which are often the worse part. ”
Having heard this situation I was shocked by several things. Firstly this lady was referred to my friend by a healthcare organisation. Once the issues developed there was no ‘end game’ plan for either my friend or the patient. No follow up for either at all. This is an issue that is becoming much more common now, as there just is not enough appropriate support in the system. Of course this won’t stop most of us doing what we do, but I wanted to highlight the possible issues involved.
Are you aware of any similar instances in the work that you do? Do you believe that cancer is given the priority I think it should have in the mental health sector. As usual please feel free to share your own views and experiences below.
Throughout the five years I was monitored following cancer the medics looked purely for clinical signs of recurrence with no concern for mental health. I got myself through. Hope you & your family are OK. Deb X
That’s the same for me Deb, and most people I know. I don’t think clinicians aren’t aware of the psychological issues, but they are concerned about the lack of appropriate support! Like most major decisions in this country, things are left until it is too late. I do see more resources becoming available but as usual nothing like what is really needed.
All good this end thanks Deb and hope the same for you guys XXX
I’m not lonely but alone if that makes sense. Since my diagnosis and surgery my recovery seems great. What a lot of people don’t realise is how awful the ongoing treatment side effects can be. Surgical menopause, not allowed to take HRT, feeling like an old woman, still going to work and feeling knackered. Not knowing if the pain you experience is a side effect or something real and not really having anyone to help. My team at the hospital want me to contact my gp about my side effects queries, but should I be lucky enough to get through, I don’t expect my gp to be an expert in cancer meds. It’s quite overwhelming at times, but I ‘LOOK’ fine…
What you have described Darls I understand totally. Dealing with life after treatment can be a lot more difficult that experiencing the treatment itself! The work I do involves improving the life of people surviving. We don’t want to just survive but thrive, and live life the fullest we can. It seems that society is not ready for so many people living beyond their disease.
Many complex diseases can be ‘invisible’ after treatment, so it becomes difficult for people to understand that you may even be feeling worse! My own treatment involved a stem-cell transplant from a donor. I have had complications from that since 2007, and I look fine too!
It can feel very overwhelming at times, but hopefully you can find a way through. Thank you for sharing your own experience Darls!
A wonderfully well written piece. For those of us in this cancer club, we are the ones who suffer emotionally when friends (some lifelong) head for the hills. “If you’re going to get cancer you may as well get hat one”, we’ve all heard them. The turbulence in your mind as you question whether you’ve been accommodating enough with your progress. “Text me, let me know how you’re getting on”! That’s another. The list goes on.
Unless you’re in this club, you’ll never understand. A very sad situation. We’re not martyrs, we drew a bad hand and the people with the full house should perhaps just take a moment to reflect.
Hi John, thanks so much for your kind words. One of the biggest challenges around cancer is that it affects us all differently. What works for one is not right for somebody else. We’ve all heard those phrases you have mentioned, but I don’t really have a problem with them. I know just how challenging it can be for our friends etc. How can they understand? My work involves talking to people affected by cancer every single day, and there are times that I get lost for words.
Cancer changes so much about our lives! I didn’t want others to struggle so I explained what was happening as I went along. Of course there will be people who find it difficult. Sometimes all they need is a little encouragement.
Very best to you my friend.