Living with remission

I have titled this post 'Living with, rather than in, remission', as I feel that there is a big difference between the two. To explain that further, I have taken a dictionary definition of the word remission, in a cancer context.

'A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body'.

Over the years, I have spoken to many people about remission. Of course, it is a word that you are hoping to hear, as you go from diagnosis to prognosis to treatment. If things go as you hope, you may eventually hear those words, "Congratulations, you are now in remission".But what does life have in store for you now, once you have reached this stage?

Well unfortunately, the shadow of cancer that has walked with you this far in your life, will always be a constant companion. There is no hiding place from it. Despite being told the above, you will still have hospital appointments on the calendar, even if they are less frequent. You will still need to be tested/scanned at various stages, to monitor your progress and check for any sign of relapse.

Cancer, can be like carrying an extra bag around with you. There are times when you can put it down, and even leave it somewhere, but you can never forget about it totally, and fairly soon, you will be reacquainted with it!

Is it possible, to leave the hospital, having been told that you are in complete remission, and carry on your life as if nothing has happened? Personally, I don't think so. I know many people that are in that position, but it seems their lives are very different now. A lot of people don't even mention their experience, and it is only their chosen group of friends, that are aware that anything has happened. That is their way of coping. It seems like they have shut the door, bolted it tight, and are doing their utmost to forget about the experience.

Others are quite the reverse. Like to let everyone know, maybe do some fundraising, and awareness raising, generally sharing their experience. Which ever camp you belong to, your life has changed forever.Things that seemed important before, just don't have the same priority.One area where this can be very apparent is work.

Work is a very important component of life for most of us. It is always difficult to strike the right, work/life balance, at the best of times, but how do we view it once we have experienced cancer? Firstly there is the issue, of whether you are actually physically able enough to return to work. Sure we all need money to survive, so it can be extremely difficult to return to work, if maybe you have been off sick for a long time. Maybe lost your job because of your illness, and are looking to be re employed.Possibly having to change careers in later life as you cannot find the job you want.

In my own instance, I will never be able to return to what I was doing before my illness. I have been sick for more than five years now, and just don't have the hunger to get back into the cut and thrust world of business. My life is now dedicated to helping others. I am in remission, but am suffering the severe after effects of my treatment. Of course I am happy to be in remission, it is a miracle in itself, but my original life is behind me. I have had to make a new one, but am still lucky to be alive

I liken my remission, to living in the shadow of a massive tree. At times, you see some sunlight, but more often than not, you are living in gloom. Being grateful for what you have, but also never sure how long you will have it. Finding it difficult to make a long term plan, just in case! Never quite knowing what the next call or letter will bring. Always having that feeling of uncertainty.

On the positive side, life is never really boring, as I never know, what is going to occur, good or bad. There have been some fantastic highs as well as some very low spots. I am a very different person now, and at times, struggle living my new life.A part of me wants to go back to my old life, but the other part is glad that I found my new one. Whatever I really think, I have to live my life with remission, until something changes!

"How are you?"

"How are you?" This is possibly the most common greeting that we use today. In fact we probably use it so frequently, that we have almost forgotten what it actually means. It is a question, not a statement and therefore prompts an answer, which may then start a conversation! In truth, that is not what we necessarily want to do. What we are actually doing is acknowledging that person.

"I'm fine" is generally the answer which comes back, and for most of us that is probably a relief, as we will not then get involved in a heavy conversation.We all have issues of course, in most instances, not really of interest to anyone else, and if they were, possibly far too complex to be discussing in a brief encounter.

However, when I am involved in a cancer environment, the question is asked slightly differently, with the expectation of a more complex response.In my five years of personal experience, I think that I have encountered, most situations, good and bad, yet still, things arise that shock me. This was what happened a few days ago.

I was at a social function, where I saw two people who I hadn't seen for some time. Both looked extremely well, and it was great to see them. So when I greeted them with "How are you?" I also expected the reply of "I'm fine". However the response in both instances was far from fine! I was shocked. In both cases their cancers had returned, more aggressively. They were both having treatment. I was not prepared for those answers, as they looked so well, but I considered it a compliment, that they felt they could share their story with me.

In both instances, we talked for some time, and they appeared grateful, to be able to talk to someone who understood. Would they have responded in this way if they weren't aware of my own situation? I don't think so. To most people they would be saying that they were fine.That is the most convenient response for both parties.

Most people who ask me how I am, ask for genuine reasons, and have a concern for my health. But I find that I have to tailor my response, individually.My issues are very complex, and I struggle at times to understand them, so how can I expect anyone else to? Some people have a better grasp on what is going on, and others just want to touch the surface. In truth, I still want to say everything is fine, and move on! It just seems easier.

A friend of mine, Allan Smith, a fellow Lymphoma patient, wrote the following, which I feel sums up brilliantly, "How are you?"

 

"How are you?" everyone asks, "I'm fine"

"You are looking well" everyone says, "Yes, I'm fine"

"How's it all going?" some people say, "Oh, I'm fine"

"You must be strong" people say, "Oh I'm fine"

The simplest of phrases that won't let you know, all the pain and the fears that I don't want to show.

I can't tell you I cry when I sit on my own, and that my mind is in turmoil, I don't want you to know.

My body's in pain and it just won't subside, and I feel like I have left my life far behind

If I told you these things, how could you see, your world is so far from my reality.

It's falling to pieces inside of my head, so I tell you "I'm fine" as this puts it to bed.

You smile as I say it and you look so relaxed, so I'll say it each time when you venture to ask, "I'm fine"

 

 What response do you hope for when you ask "How are you?"

Cancer support using social media

This week has been an absolutely incredibly busy and fulfilling time. I have spent my week, communicating with people around the world. I have spoken to patients, charities, complementary therapists, cancer service providers, media people, volunteers and NHS professionals.

Most of this is happening because organisations are beginning to use this blog as a resource in the work that they do, helping people affected by cancer. I have always been aware of the many varying needs of patients and families, but am now starting to discover, how many organisations there are out there, all helping people with different aspects of their care.

The beauty of the internet, is that we are now finding each other, and working together, slowly forming a worldwide community.What I am also seeing is that because this is a relatively new way of working, no one has really worked out any official set of rules, so that even Governments and regulatory bodies are not exactly sure how they can control things. The down side of that is that there is a lot of unwelcome stuff out there for people to access. However, the very massive positive for me, is that because there is very little red tape, we can actually cut away a lot of the unnecessary barriers that are put up by vast public organisations, and be available quickly to the people who need us most.

I would like to clarify, that I am not looking to turn our organisations into a ' wild west ' with no rules or regulations at all. Of course, we all need protection, and the knowledge that those who are in a position of trust, deserve to be there, and that we are all safe, and receiving the care we deserve. However, it seems that over the years, we have turned too far the other way, and are making it very difficult for people to help.

This blog is independent, and not sponsored at all. I work with numerous charities around the world, and they very kindly signpost their supporters to it. Anyone can find it online, with a simple search, so it is there for all to see. As my regular readers are aware, I started this blog, as my experience as a long term patient showed me, that there were very few blogs that told the ' warts and all story ' of life through the eyes of an incurable cancer patient, in language that everyone can understand.

People need to know what to expect, good or bad, so I decided to write about it. What content, style, frequency? None of this I knew. I was aware however, that the readers would decide my fate. If they didn't like the content, they wouldn't read it!! Thankfully, that isn't the case, and as time has gone on, and the readers have interacted, I have managed to develop appropriate and stimulating content.

I feel that this blog and a lot of other fantastic resources that are available now, would not exist if they had to go through some of the usual channels. Patient surveys, steering groups, health and safety, risk assessment, content control, feedback, who is going to run it, what are the emotional effects on that person, will they need support too? Phew, I'm worn out typing it, let alone going through the process!

This sort of work, doesn't wait for an appointment to see someone, before it can happen. It is on their computer immediately. Have you tried getting to see that person who can make a decision? If you get past the 'out of office' there are the eternal meetings, and finally annual leave! By that time, you have forgotten what you wanted in the first place.

My position is unique. I don't have a career, job title, salary or pension to protect, so can be truly unbiased in what I talk about. I have nothing to gain personally from my work, except satisfaction, which is a more than ample reward. The fact that there are so many readers around the world is truly wonderful, and for your regular following and support, I thank you. Your encouragement has helped me drive this forward with enthusiasm.

As I mentioned earlier in this post, I have heard from some incredible people, with some really inspiring stories. I would love to be able to share some of your experiences, as I know that our expanding readership would benefit from them. Some of you have mentioned that you would like to write a piece, which I will gladly post.Please feel free to leave a comment here or Facebook/Twitter

#workingtogetheragainstcancer

Thyroid cancer experience? We need your help pls!!

Hi everyone. As you all know very well by now, I started this blog, to help people understand that the feeling of isolation was not unusual, when dealing with a cancer diagnosis.It is a problem that is very underestimated, amongst all the things rapidly occuring once the system starts moving.

It is something that is difficult for people to understand, if they haven't experienced that situation themselves.When your diagnosis is received, normally family and friends join together in offering their support, both emotionally and physically. Then you have your medical team, who you get closer to as your treatment progresses. Your consultant becomes your new best friend, and the pharmacist knows you as a regular customer.

To add to the above, you have your fellow patients that you will meet regularly, in clinic or whilst having treatment. There are probably more people in your life than normal! So how can you feel isolated? Ironically for a disease that affects so many people, you really can feel on your own!

Why is that, you might ask?? I know that you will all have your own answer, but mine is that everyone is different. We can have the same cancer, same treatment, but very different outcomes. We all have very different domestic arrangements, financial issues, etc. So therefore, things are going to affect us differently.

In my experience, the best person to talk to is generally someone who has been through the process that you are about to begin. They can explain, in simple language what you might expect to face, and how they felt while they were undergoing treatment. Someone who is truly independent of your situation.

Recent patient surveys have shown that the two people that patients were least likely to talk toabout some of their personal issues they were facing was their doctor, and partner. People were always concerned that the doctor never really had time for them, and they didn't want to worry their partner any more than necessary!

I have received the below, very moving request from one of the members of this blog, who is recently diagnosed, and is searching for someone who has had a similar experience which they would  be prepared to share.Is there any out there in our large community that can help??

Please contact me by either leaving a comment in the box below, or Twitter. Or there is a link to this ladies blog, where I am sure she would be very grateful to hear from you!

This is a perfect example of why we do what we do, and I would like to thank you in advance for your help. Please forward this link where you feel appropriate. Chris

#workingtogetheragainstcancer

 

 Wanted ~ Cancer Buddy

"In the few weeks since I found out I have thyroid cancer, I have joined the Macmillan forum, and the thyroid group on there, with the hope of finding someone to connect too, a cancer buddy if you like, I know it is early days and I may find someone as time goes on who knows, but I know as much as friends and family try to offer support, I am feeling very alone and a whole lot lost."

"Maybe I'm not looking in the right places."

"Maybe it how all cancer patients feel." 

"Maybe there should be a personal adds for cancer buddies." 

Posted 20 hours ago by Vintage

Facing fear and feeling free

Not only, during my many hospital visits, but in most other life situations, I am a 'people watcher'. A lot of my friends tell me they do the same! I find other people so interesting,how they all react differently to situations, what they say or do in certain circumstances. Obviously we all have what is known as a 'comfort zone'. But it is what happens when we are outside that zone that really interests me!

I imagine that we all have different size 'comfort zones',gained from our life's experiences. You might assume that the more experiences you have, the more comfortable you might feel. Taking that assumption a step further older people should have a larger comfort zone than youngsters. But it isn't like that at all, and a lot of older people feel very vulnerable and frightened.

We are all affected by fear, in different situations, and there appears to be no logic to it. People don't like crowds, tiny spaces, heights, needles, blood, certain animals, flying, going on boats, going to the doctor/dentist. The list is never ending and we are all totally different. Some of that fear may be generated by bad experiences in the past, which stay with us during our lives. For other people, they maybe know someone who has been directly affected by something, and they have taken on that fear.

Fear is not always a negative emotion. It can actually drive us to be stronger. There are times when there is no option but to face our fear. In a lot of cases, once that is done, the fear is removed forever. More often than not, our feeling of fear, is generated by what we THINK might happen, rather than what will ACTUALLY happen. The longer this continues, the stronger hold, fear has on us. Let's be honest, the thought of a visit to the dentist is generally worse than the visit itself!

The power of the mind is a fantastic thing and can certainly help us achieve things that we never dared believe possible. That is, if we use it positively! If the reverse happens, that is when the problems begin.

I am extremely interested, in the relationship of fear and illness. It seems fairly inevitable, that if fear and anxiety start taking over our lives, that we will become ill. Hopefully this illness will only be temporary, and with a course of medication, and a bit of deep thinking, your life will be back on track. However, if we are unfortunate enough to get a serious long term condition, this downward spiral could continue, with fear not only fuelling the disease, but obstructing the treatment too.

Over my years as a patient, I have found three different categories that we fall into. Either, positive, confused, or frightened. Sometimes very positive people, before their diagnosis, become frightened after it. Also the reverse can apply. I think that there are times when we all can fall into the confused camp!

As we are all aware, it is impossible to tell someone to be positive, when that is the very last thing that they are feeling, but I have found that people who have been able to reach an element of positivity with their situation, seem to have a better experience. Why is this?? I have no statistics or any logical reason. Maybe, like me, they have faced their fear, and are no longer shackled by it. For me, it has been a very empowering experience. I now live without personal fear, and it has enabled me to do so many things I would never have felt possible before.

I have faced my own mortality several times in the last 5 years, and faced some of the worst regimes of treatment available. Anything else that comes along will just be swatted like a fly! I was frightened at first of course, but my imagination was much worse than actually what happened. Like all of you, I have had many difficult situations to deal with over the years, not involving my health. On no occasion was the result worse than I had imagined.

Living in fear of something can be very debilitating. What are you frightened of? Do you feel like facing your fear? I can recommend it, if at all possible.

Cancer Patient Experience in the N.H.S

I have spent the last few days, looking through various reports, written about the Department of Health's National Cancer Experience Survey. If I am honest, I am not really a report type of guy, but anything that talks about 'Patient Experience' grabs my attention. This is my passion, and I spend a lot of time working with support groups, charities. N.H.S. trusts etc to try and improve things for current and future patients.

Macmillan Cancer Support, have produced a table, showing in simple terms, the best and worst performing trusts. It so happens that most of the worst ones are in London, and my congratulations go to Harrogate who come out on top.

Ciarán Devane, Chief Executive of Macmillan Cancer Support, says: 

"Though many hospitals have made an improvement, far too many cancer patients are being let down by hospitals failing to provide an adequate level of care. Patient experience and non-clinical needs must be given as much priority as medical activities.
"Patient experience is one of the Government’s five key measures for success in the NHS, so Trusts need to take heed and work with Macmillan and others to urgently improve the care they offer cancer patients. I am encouraged many Trusts are taking this seriously.
"Imperial, while still at the bottom of the table, is committed to addressing the problem and working well with Macmillan and cancer patients. But these things take time, and won’t happen if they do not have sustained, top-level commitment."

 The points raised above by Ciarán are very important, particularly the last one about top-level commitment.We can all work as hard as we can, but I know from personal experience, that if Consultants and above are not on board with fresh ways of working, then nothing will change.

The problem with these types of report is that they are very general, and of course you will always find people that have a bad experience in the top hospital, or a good experience in the worst one. To my mind, this is not really important. What these surveys actually do is highlight the need for change. I do appreciate that we need all the research etc to shape the things that we do, but as you are all aware, people with long term conditions such as cancer, do not have the time to wait.

I have been involved in a very active capacity,for more than four years, to improve the cancer experience for patients. I am on numerous consultative bodies, with other patients/ex patients. So we are being allowed to have our voice, but the problem comes when we need action. The levels of red tape and layers of continually changing management and systems makes it almost impossible to change anything. Let us remember that we are volunteering our time and skills to do this. Whenever I am talking to professionals, they are always paid for their time, so time is not an issue.

So many of the things that are continually talked about, are really very basic in any customer service industry. We are all customers, after all! Simple things like meet and greet on reception being told if a clinic is running late. Basic communication skills you would have thought? In the High St we can choose where to buy our new TV, we will go where we get a well priced product but particularly these days, where the service is good. That is why people like John Lewis are bucking the retail trend. SERVICE!!

 Ciarán also makes the important point that 'non-clinical needs must be given as much priority as medical activities'. There is so much fallout from a cancer diagnosis, that just gets left behind during a hospital visit. Generally people don't feel free to talk about their worries, as the impression is that no one really has the time to listen.I am a chatty guy, so make sure that I ask what I need to but not everyone is able to be like that.

To summarise, I feel that on the whole people are reasonably happy with their clinical care, eg,surgery, treatment etc, but it is the customer experience that definitely needs to improve. In my opinion, this is a culture change that needs to start happening now. Customers expectations have changed over the years, and commercially are much more demanding. The N.H.S has to move with the times too. Things that I am talking about do not involve new computer systems or equipment and not billions of £s in investment. They are relatively simple to introduce. Also, the increase in patient involvement of course is great, but it needs to be much more than lip service. Not only do we need a voice, but also a microphone!!

Do you agree/disagree with my views? What do you feel? It would be great to get your opinion.


http://www.dh.gov.uk/health/2012/08/cancer-experience-survey/