The last few weeks have been busy, with some incredibly powerful stories shared, particularly regarding cancer and the work place. I was always aware that this was a much larger issue, than was talked about publicly, and some of the stories I have been told, have reinforced that view. My concern is that there are so many very important issues for people affected by cancer, that rarely get brought out into the open to be discussed properly. It seems that in many instances people feel uncomfortable talking about things publicly, and my impression is that this hinders progress in resolving these problems.
I have found that one of the major obstacles to people dealing with issues is that of course many are coping with the physical and emotional aspects of cancer, and to spend time and energy campaigning for improvements, is just too difficult and traumatic. Thankfully we now have social media which enables like minded people to be able to share work and information effectively. It also enables many more people to get involved, as little or as much as they can. Working together is very much the key!
My subject this week came about from a very surprising conversation I had with one of my fellow patients. I have known this person for more than two years, where we have spent many hours having treatment together. After two years our treatment has been reduced from four days a month to two, hoorah!! But I was then asked, how I would feel when hopefully the treatment finishes eventually. This question shocked me, as of course it would be brilliant for me, but this lady’s answer was more hesitant. She felt unsure about things. She would only be going to hospital for initially six month reviews.
It seems that she has become reliant, on a very caring system that has looked after us for many years. Personally, in the last seven years, I have never gone longer than one month without a visit to the hospital for a check up. I have faced so many issues, that it is thought prudent to keep me close to hospital, and this has proved a good strategy as my health is proving to be very unreliable. I am longing for the day when they say they don’t want to see me for 6 months, and I won’t take it personally! But this made me think, how many people find that the hospital has become their ‘safety net,’ and are becoming too reliant on it?
Of course we need to look after the sick and vulnerable, but I can see that it is a difficult line to drawer, without slowly removing that person’s ability to cope for themselves. During my own numerous and lengthy visits to the hospital, I see many people who seem to visit department after department, almost like a full time job. Naturally everyone who attends hospital, can justify their visit, but I do wonder if many people are attending unnecessarily.
In a lot of cases, cancer treatment and aftercare can continue for a long time, and if you finally get to the stage where you reach six monthly check ups, this can create an issue of it’s own. For most of us, once touched by cancer, the fear of relapse is never far from our minds, despite reassuring words from clinicians. There is an element of ‘security,’ around regular hospital visits. People worry that their blood won’t be checked, and many are concerned that they are no longer having scans they feel they should have. Is this something that affects older people more, possibly but not exclusively. I know many younger people who feel this way too.
Getting back to some form of normality after extensive treatment can be a lot more difficult than you might imagine. Suddenly you leave the hospital for the last time for six months, and the realities of coping at home start to hit. Psychologically this can be a difficult time. For a long time, the focus has been on you. Nurses, doctors etc, all ensuring they do what they can during every visit, friends and family helping too. However, slowly but surely the focus changes.
Like most things about cancer, this can affect us all differently. Adjusting to work, if you are lucky enough to be able to work, is one thing, but getting used to long periods at home when you are not used to it is another. This was a major issue in my own case. Most people can’t wait to spend time at home, but when it is enforced it feels totally different. My wife and I had some massive changes to make. She had her routine, and I had to do my best to fit into that, it wasn’t her fault I wasn’t able to work. I felt I was in a cage and my freedom had been removed. My income had been removed, but I had been given some spare time.
I have seen many relationships break down because of cancer, and I can totally understand that. Not only does it affect the patient, but everyone around them including loved ones. This area of time is rarely discussed, when you are set free from the clutches of your clinicians. They have done their bit, and are on to the next patient. We must now find a way of picking up the threads of our life again, on our own, which in many cases can prove a massive challenge!
Are you pleased to see the end of treatment, or are you unsure of what happens next. If you are in continuing treatment like me, do you foresee treatment ending? What are your thoughts?
ohhh this is so where i am at at the moment, finished 6 months chemo 3 weeks ago, thought i would be glad to see the back of it all, but i am sad to say i miss the weekly vists to flush my line, the reasurrance of the bi-weekly chemo clinic, and people just expect you to go back to the way things were before……i don’t think so….i think this is a subject not really given a great deal of space..thanks for bringing it up
Hi Lucy. Thx for your comments. I am totally aware that this is yet another issue that rarely gets mentioned by professionals, like too many others! Exactly the reason I write these pieces. I am talking to patients daily, and am finding the same issues myself, so always like to provoke some discussion!
I really was shocked to have an informed discussion about this and find that people feel ‘too safe,’ within the structured system we have. I really don’t know the answer, but I am aware that people miss the safety of the hospital, after long term treatment.
It is quite a major readjustment for most and a very understated issue. No one seems to ask how your life is going once you leave the hospital.
Thx for sharing your experience, and I hope your craving for the safety net starts to fade! Chris
I also feel that once somebody goes on to 6 monthly or even yearly scans or checkups, other people assume it is an all clear and the patient will be fine. They seem surprised that issues like depression, anxiety etc are still a problem and haven’t miraculously disappeared. Although saying that, you are sometimes offered an open appointment to contact the clinic or Specialist, before the 6 months/year is up, in case you are worried
Hi Eileen. Yes there is always option to contact the clinic in between appointments, which is important. You are absolutely right about other peoples perceptions of when you finish hospital appointments. They think that immediately you will be back to normal! If only eh?
Like most things in life I think. unless you have experienced it, it is difficult to really understand. Thanks so much for sharing your thoughts, Chris
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Good post. I’ve been on 6-monthly visits and annual mammograms for 4 years now. When they decided what my treatment options should be they gave me a printout with the percentage chances of survival over 5 years for the different kinds of treatment; lumpectomy and lympectomy X%, radiation therapy Y% more, Chemo Z% more, hormone pills H% more. Because I was on a low radiation trial I see the consultant usually. I am not sure whether this makes a difference to how often I go in though.
But what has been worrying me as I come up to the 4th year mammogram and visit is what after 5 years? Initially I think they said the hormone pills were for 5 years. Do I then stop and stop the visits too?
There are other meds to go with the hormones because they affect bones adversely, calcium and other ones. Do I stop those? I’ll have to remember to ask when I see the consultant. I did register for a skype chat with someone on Macmillan website but they never got back to me with a contact.
Hi Vicky. Thanks as always for sharing your thoughts. I have seen this same issue come up very frequently, in fact I was with someone recently, who had the same thoughts as you.
I am always asking questions about my treatment, to enable me to make judgements about things, but many do not have the confidence to have long conversations with their clinicians. My experience shows me that there is a great deal of uncertainty, as people enter their last phase of treatment. I am not sure if this anxiety is fully understood by health professionals?
Re your point about Macmillan and Skype. This is unusual, that no one has contacted you from this particular project, as I understand it is working well. I would be happy to progress things for you if you would like. Please let me know.
My best to you Vicky, Chris
Oh what a fabulous post Chris and such an emotive subject for me. After my brain tumour and brain abscess I was left virtually unable to move & was dependent on nursing care and once home the intermediate care team before community Physio OPD took over in helping me gain as much of my mobility as possible. When the Physios felt I had reached my potential, I found it incredibly hard to let go of my appts as I could not walk properly or far (still can’t) and accepting that this was ‘as good as it gets’ was beyond me. I wanted to be back where I had started. When an attempt to return to my national nursing role also didn’t work out that I completely crumbled. With a benign but devastating brain tumour, post surgery support was absent and I had a huge new normal that I needed to adapt to! I discovered the charity Brain Tumour Support who helped and also started writing my blog http://Www.mindthegapa-blogspot.com. I was almost there (accepting my new normal) when a breast cancer diagnosis hit me this year. I hope that this journey will be a blip rather than another massive change in lifestyle. This time I am positively craving for my last hosp and clinic visit!
Dawn, I am always inspired when I see your work, and am grateful that you share some of your vast catalogue of experience here. We can all learn so much from you.
I have trouble adapting to one new normal, and you have two! I am with you, positively craving for my last hospital visit! But I’m sure it will feel very strange.
The conversation I had that sparked this post, quite shocked me, how dependent we become on the system. I am not convinced that professionals fully understand this issue.
Your sharing is much valued, and through your own blog I know you are helping and inspiring many! Thx for your comments, and good luck as you continue your own journey, Chris