I have just seen the new advert for Macmillan Cancer Support and my feeling was that it really summed up exactly how I feel at times. Even after more than seven long years there are times I feel totally confused and lost, so it prompted me to share some thoughts about feeling alone.The feeling of isolation is one of the major side effects of a cancer diagnosis, and one that unfortunately is very difficult to deal with. It can be a very destructive force, both mentally and then eventually physically. The first major hurdle is actually recognising the problem,then an even bigger issue is acceptance. If you have never had those feelings it will be very difficult to understand, how someone can feel that way, particularly when they are continually surrounded by family and friends, which many of us are.
During my frequent meetings, with people affected by cancer, I am continually shocked, how I have to actually ask people if they feel isolated. It is something I have encountered, that affects almost everyone I talk to. However, many people feel awkward about mentioning it and I have also found it is a subject that is hardly ever discussed between partners. The main reason I have discovered for this, is the fear that the other person will not understand. This is yet another side effect, that is rarely talked about openly, Doctors don’t ask, and patients don’t mention it. Something else to make the situation more complicated! Every diagnosis of cancer is unique, and will affect everyone differently, that is why there is not one single answer to this. But in most cases, it is not about taking more drugs or seeing a counsellor, which tend to be the common alternatives, if you mention that you feel differently, either psychologically or emotionally.
My feeling is that unfortunately, we are all seen as our disease, and not necessarily as a ‘person.’ When we see our clinicians, rarely are they able to see beyond what is wrong with us, into our life, and the part we play in society. A father, a husband, an entrepreneur etc, none of that seems to come into the picture, this is where I feel we need a much more holistic approach to treatment.There are signs that at last these issues are being recognised, with the introduction of a Holistic Needs Assessment Tool, developed by Macmillan Cancer Support. Also the very successful #NotAlone campaign, which is raising awareness of the isolation issue. But in my opinion, so much is still left unsaid to the patient.
For me, social-media has been one of the greatest tools to help combat that feeling. Of course, I am the only one travelling my journey, but I am aided by others who have also travelled it, who are there for me when needed. There are no hidden agendas, and they ask for nothing in return, they just ‘get it!’ Unfortunately, many people who would also benefit, are as yet unable to sample the joys of the Internet, due to lack of knowledge, or affordable equipment.
However in the seven years plus that I have been on my journey, I have seen incredible advances in raising awareness of these issues publicly. The fact that we are now seeing adverts like this on main stream television is an indicator of that. I remember when the first advert for this campaign came out, there was some resistance to it, and some viewed it as too hard hitting. My opinion was that again, it really summed up how I felt when I was given my cancer diagnosis, and was certainly representative of things for me at that time. Even if you didn’t agree with how the advert portrayed things the fact that this issue is being discussed publicly is a really positive step forward! In summary, the feeling of isolation after a cancer diagnosis is fairly normal, and is one of the main reason’s I started this blog. I can’t pretend to know the answer, but my offer for improvement is to make patients aware of it early on, so they don’t feel that they are the only people feeling like that, as many still are today!
How has the feeling of isolation affected you? What is your opinion of this latest advert from Macmillan Cancer Support? Does it reflect how you feel or have felt since cancer entered your life? As always please feel free to share your own thoughts and experiences below.
Hi Chris. When I had my Benign, but utterly life changing brain tumour I felt completely alone once the shock wore off and I achieved the physical challenge of sort of walking again. When I saw the old Macmillan cancer advert on TV, with a patient falling but being caught by a Macmillan nurse I sobbed! After that I turned Ithe TV over as I couldn’t bare to watch it, it reminded me so much of the pain I had been through and the anger that the support for people with benign but devastating brain tumours is/was so inadequate. As you know more recently I have had ‘proper Cancer’ (Breast) and as a result have received lots of emotional support. This new advert is powerful, but for me brought home the still ever present feelings of isolation I had after my brain tumour surgery.
As always Chris you hone in on an important hot topic!
Dawn x
Hi Dawn. I have also heard of similar instances to what you describe above, about lack of support for benign tumour patients, and I don’t know why that is but something that I will enquire about in future conversations.
Yes, I agree the adverts can be a painful reminder for many, about our personal experiences. I also felt the same, but came to the conclusion that it needed to have that sort of impact for people not directly affected, to be able to understand.
It is always a fine line to tread, and I have had several discussions with the team at Macmillan, about these adverts, and the overall conclusion was that they had been received positively. My view is that we have come a long way in recent years, and it’s great to hear that you received positive support after your breast cancer. Thanks as always for sharing your own experiences Dawn xx
I forgot to say I have bee in contact with the hospital and charities and had discussions on how they can improve the links and therefore the support to people who are diagnosed with ANY brain tumour. I live in hope that others will not suffer the initial isolation I had through not being immediately directed to sources of support provided by Macmillan and brain tumour charities Dawn
That’s really good to hear Dawn. We are all chipping away at this massive issue around emotional support for people affected by cancer. Well done for doing your bit! Chris x