Been perplexing a Doctor again, getting to be a habit.

It has been a while since my last post. Fatigue hung around for a bit, faded away, came back and disappeared again. Which is pretty much how it goes. I have been working on getting more exercise and will be starting Nordic Walking class in about 10 days, I checked out with my consult whether this was a good idea and he thought it could help and there was no reason not to do it, but I jump ahead, more about my collarbone later. Hopefully, a short burst of medium intensity exercise will help. I still feel that exercise does help, so will try this and once the weather improves a bit will be back on my bike. In the meantime, I will just be walking.

So what else has been going on, not a great deal, doing a bit for Macmillan and have a full day coming up this week on the Peer Evaluation project. Still moving forward on sorting out the training to be a group facilitator. Seen a few friends, gave a friend a lift to pick up a car and then went on to visit Littlehampton. If it had been warmer and hadn’t clouded over it would have been lovely. There are some really interesting bits of street architecture on the seafront and an amazing cafe clad in Core10 steel. Will definitely be going back to get some better photographs, not happy with the ones I took hurriedly.

Also had a checkup with my orthopaedic surgeon for the collarbone. He perplexed about the continuing pain. I should not be having any. He was unsure if it was to do with my radiotherapy, a possibility that cancer had spread to the bone or that I have had 3 surgeries to that shoulder in under 3 years. I don’t think my cancer does spread to bones, my surgeon was unsure or unwilling to commit himself to saying it definitely didn’t, which is reassuring as he recognises that he needs to get advice on this. The upshot is that he is going to write to my ENT surgeon and Oncologist and ask them to review me. I am seeing my ENT surgeon in 2 weeks for my regular checkup, no doubt this will be discussed then. Whether I get an answer then remains to be seen. It could be that I would need further investigations. From my Orthopaedic Surgeon perspective, he could send me for tests but he would be doing so as a fishing expedition, hoping something shows up or to rule out something so he doesn’t feel it is good for me to be subjected to further tests at the moment. Likely tests would start with a CT scan, bone scan or MRI. I have no idea what the cancer lot will suggest if anything.

I am feeling pretty relaxed about this and am not as worried about this remote possibility as I was about the recent lung cancer one. Then as an ex-smoker, I was slightly worried. I haven’t done any research but am fairly certain that my cancer is not one of those that goes into bones. I am not going to go googling as it is unlikely to give me the answers I need to work out whether my cancer does affect bones. I know enough to know that I don’t know enough to go looking and get reliable answers. When working I used to advise clients against self-diagnosis by google and I will heed this advice myself. Many times I had clients arriving to tell me that they or their child had something, which they didn’t. Google is a wonderful resource but is also a curse if misused and causes people a lot of needless anxiety when used for self-diagnosis.

So this is pretty much my life at the moment, still, a greater focus on medical stuff than I would like. On the plus side, I am still here to be perplexing medical folk. I have a nice routine, am seeing a few friends and getting out and about, have the voluntary work to look forward to and once the next check-up is over will hopefully be in a position to think about booking my next trip away. Life continues to be pretty good.

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Thoughts and observations of my ongoing fatigue

People sometimes ask me about my fatigue and occasionally question the difference between it and tiredness. Some even question whether it is real, I can assure you it is and at times really difficult to cope with, mostly it is a minor irritation. This week it has shifted from being a minor hassle to preventing me from doing all but the very essential self care things we all need to do to survive and writing this blog entry, though this has been done over a couple of days rather than the normal write in one go as normal. In addition to writing this to explain to others about my fatigue, I am also writing it now to help me clarify my thoughts about the fatigue and attempt to describe the different degrees of it to you and myself.

Prior to my treatment I probably would not have differentiated between fatigue and tiredness, now though I experience them very differently. I can be fatigued and tired or fatigued and not tired or just tired and they all feel different to me. I remember reading a Macmillan booklet about the after effects of the treatments and another all about “fatigue”. When I read them at some point during my treatment I didn’t take a great deal of notice because I didn’t feel fatigued at the time, or more accurately did not think I felt fatigued. I felt ill due to the Chemotherapy and Radiotherapy so this masked the fatigue, it was lost in the feelings of malaise I had, well actually I felt like death warmed up and probably looked it.

As the recovery period from the Radiotherapy and Chemotherapy progressed and I shifted into convalescence I didn’t really think about fatigue that much. Just saw it as me being as the saying goes as weak as a kitten. Also as I wasn’t sleeping well I thought my need for naps throughout the day was due to not getting enough sleep and in a big part it was. There was I can see now an element of ongoing fatigue which I didn’t really recognise or ignored. Also my fatigue manifested itself slightly differently then to now, this though might be because I didn’t recognise the early signs and got more fatigued before resting as I try to do now. Of course this isn’t always possible and I carry on and then can have a deeper bout of fatigue or rarely carry on and not suffer later. When I first noticed the fatigue and identified it, I was feeling as if I was going down with a cold or another bug, sometimes I would get shivery as if I had a temperature, other times I would be achy, I would feel the fuzzy headed feeling you get as you become ill.

When I returned to work 6 months after the treatment ended I was still very weak and in hindsight not ready to return to work but at that time I wanted to and felt I needed to for myself and for my team. Going back, I was fortunate in being given strict instructions by Occupational Health Team to have a slow and gradual return. Even with this I felt excessively tired after a couple of hours of working and just about managed my 3 days of doing 3 or 4 hours initially. This was slowly built up to full time and I extended this build up by taking a week or so of holiday. Then we entered the summer holidays when work is quieter and I could ease myself back into full time work and did. I also had 2 and a half weeks of mid September to early October. I then worked through to mid November when I started using annual leave days to work short weeks before doing a really full on week where I worked two very long days and the other 3 days I worked over my 8 hours and ignored the warning signs and struggled on getting more fatigued and unable to function properly.

During the period after my end of summer break till end of November I did practically nothing but go to work, one short ride and one medium length ride. I felt exhausted all the time and would come home and collapse, often sleeping for an hour or so, then cook and eat before going to bed before 10 and sleep through to the morning and struggle to get up. Weekends were a little different, instead of work I would shop and do a bit of cleaning but mostly would be sat watching TV blankly and generally being a couch potato. I would force myself to go for a walk or a ride in the morning when I had more energy and did feel that doing some exercise helped me overcome the fatigue to a degree. I had tried doing more riding and whilst I was working part time this was possible, however once I was full time again it was not possible. I struggled to find a balance between exercising and resting that helped me best overcome the fatigue, I never achieved this and eventually got to a point of near total collapse when my denial of the problem could no longer work. I remember thinking I was suffering with a bug but hindsight tells me it was more likely to be an acute fatigue bout when I went of sick. I got up and feeling rough got in the car to drive to work, going about a 100 yards when I decided I wasn’t safe to drive so went home and called in sick, not returning for 6 months and then only very part time so I could tie up a few loose ends before retirement.

What I then identified as going down with a bug symptoms did not get worse or subside as you would expect with an illness, I just felt the same level of awful for days. After a couple of doctors appointments and discussions with my GP including some tests we decided that I was exhausted and needed to rest so was soon signed off for all of December. We agreed that I would exercise lightly, so would only go for short rides, around 10K or so and rest for the rest of the time. So around mid December this was in place and I was feeling a little better and a bit stir crazy as I hadn’t been for a ride for several days, went for a ride despite feeling fuzzy headed and due to not thinking clearly was riding very close to the kerb, so when I looked over my shoulder to check for traffic before turning right my front wheel drifted very close to the kerb, so close that I couldn’t turn it at all to move out of the kerb. I slowed and thought I would be able to stop before anything untoward happened. What I had not accounted for was that the road was slightly curved there and my wheel just clipped the kerb and as you know I went over the handle bars and I broke my collarbone as I landed.

A plus side of this I thought at the time was that it meant that I had plenty of time to overcome my fatigue before returning to work. However, I didn’t really get over my fatigue and eventually was offered early retirement. What it did do was allow me time to work out what was fatigue and what wasn’t fatigue. Which is what this post is meant to be focusing on, despite the long preamble, setting the scene so to speak. I am now 3 years post cancer treatments ending albeit with the cumulative affects of two collarbone breaks and subsequent surgeries and still experiencing bouts of fatigue, some of which I can connect with trying to do too much, others though seemingly come from nowhere.

I am now more able to identify fatigue and see it as having different degrees, sometimes being able to correctly decide that doing some exercise could help but not always. I don’t go out cycling or drive when I am really fuzzy headed, the bike accident bashed into my rather dense and sometimes stubborn head that is not sensible. This fuzziheadedness when severe can make doing simple tasks at home a real challenge, but I think I am getting ahead of myself here. First I think I need to describe the different type or degrees of fatigue I suffer and compare them to things that might make sense to you.

All of you will know the feeling of muzzy thoughts that you get as you go down with a bug, some of you will know how jet-lag feels, others will know how it feels when you miss a nights sleep. Well my experience of fatigue can give feelings similar to all of these. Sometimes there is a physical fatigue alongside the mental fatigue and rarely I feel mentally fine but physically weak and/or have aching limbs. Sometimes the fatigue is preceded by feeling tired whilst out and doing something others it isn’t. The only consistent thing is that it keeps coming back and surprising me when it does. I keep thinking I have overcome it and gradually start doing more over a couple of weeks and then get floored by it again.

So here is my personal classification of fatigue, this is how I feel it is today and I might change it with time and further thought. I have broken it down into five degrees and there is an overlap between is level. All very subjective and not very scientific I know but hopefully it will give you an idea of how fatigue affects me. I don’t know if other experience it in the same way or not.

Mild fatigue for me is just feeling like I have a slight hangover after a late night out or I had slept badly, feel a bit lethargic but nothing more untoward, I might feel like I need an afternoon nap but otherwise am fine. Doing some gentle exercise or short burst of strenuous exercise can sometimes overcome this level of fatigue.

Low level fatigue is when I feel slightly fuzziheaded like you are a bit jet-lagged and very tired from a journey. The difference between this and tiredness is that a good nights sleep doesn’t rectify it. You are able to carry on pretty much as normal, concentrate OK etc. Again exercising can be helpful here.

Middling is like very bad jet-lag and you have missed a complete nights sleep due to being on a night flight ( I can’t sleep on a plane). It is hard to get motivated and it can be hard to focus on something for an extended time, your mind wanders and your thought processes feel sluggish, as if you are thinking through treacle, probably not a good idea to cycle but walking should be fine.

High fatigue is the feeling you have when you are getting over a bad cold or flu etc., you feel weak, mostly thinking seems like hard work and doing anything can be exhausting. You feel that you should be able to do more than you are able to do but can’t, concentrating is difficult and you lose your train of though more often than usual. You feel you can just about manage a walk to the shops and back to get a few essentials.

Very high fatigue is the feeling you have when you are going down with flu or a heavy cold but without the high temperature. You feel achy and lacking in energy, it is hard to concentrate and generally feel awful. You can just about function for short periods of time.

Extremely high fatigue all you want to do is lie down and sleep but often you feel like you have got overtired and have become unable to sleep so you spend the days and nights dozing,

I expect there are some of you thinking, well I feel like this now and again when I get tired, the difference for me though is that with fatigue it lasts days not hours. I do get tired and whilst there are similarities there is a qualative difference in how I feel, one that I am finding hard to articulate at the moment. Possibly because I am feeling fatigued at the moment and would classify myself as being shifting between Middling and Very High. Sometimes when fatigued it feels very consistent at others, like this time the level of fatigue varies a bit, this can be as a brief wave or an extended time of being in a higher or lower level of fatigue. When I started this entry and each time I return to it I am in the middling level and after writing for a bit I am back at high or very high and need to rest before carrying on writing it.

On top of the fatigue I do get tired more easily than I did before and if I am busy will get tired and will need to rest for a bit, get renergised and then carry on. This sometimes feels like the post lunch droop most of us get as we digest the meal. For me though this can happen a few times in a day and is not connected to eating. Like all of us I can carry on what I am doing and get through this short period of tiredness. Sometimes I think getting a few of these over a few days is a precursor to a bout of fatigue, others I don’t recall any of these periods of tiredness. For a time I had a theory that a bout of fatigue would follow on from a few days of being busy and then 24 hours to 48 hours later I would be fatigued. Whilst, this might be the case sometimes, there are time when I am busy doing things and I go straight from feeling OK into being fatigued, which is the case this time. I had a fairly busy social time, the stress and relief of the recent X-ray to see if a persistent cough and the ongoing fatigue could be connected to lung cancer, fortunately it wasn’t. I started my volunteering this week too and on the way home from that I felt tired, which didn’t seem unexpected to me. However, even after resting for a couple of hours, with a snooze included I felt no better and if anything I felt worse, I realised that I was entering a bout of fatigue.

I am now over 48 hours into this bout and there are no signs of it subsiding yet, recently the pattern has been a bad day or very high fatigue day, followed by a medium fatigue day, so far I have had two days of mostly high fatigue with occasional hour or so feeling like it is very high with periods of middling when I have come back to write the blog. I am not sure why the fatigue bout is extended this time, if I did it would be helpful because I could make changes to avoid it recurring. And before some of you ask, no I haven’t got a bug, temperature is normal according to thermometer. Well I am going to end this entry now and post it. Writing it whilst fatigued has been helpful as it has allowed me to examine and thinking about the impact of the fatigue as I feel it and I might add to this blog entry, which is extremely rare for me, I think only once or twice have I added to blog entries before. Occasionally, I will go back and edit to correct typo etc., making other changes does not happen. So I will end this bit of participant observer reflection of my experience of post cancer treatment fatigue.

Relieved and back to normal

It has been an odd 10 days and yet a very normal 10 days. Yesterday I got the all clear from my chest X-ray, checking out whether I had lung cancer or not. Because I had a series of X-rays in 2014 due to the pneumonia I had when I underwent the surgery, they were able to compare with the post pneumonia check up X-ray, my lungs haven’t changed and my heart etc are all in good condition. All good news. Since I went for the X-ray I have felt mostly good about the outcome, in that I thought the result would not show any lung cancer or anything else untoward. However, I knew that there was a risk and could not totally discount it, so I would be lying to you and myself if I said I didn’t worry about it at times. The worry wasn’t so much about the cancer because rightly or wrongly I felt that well I have survived one cancer, why not another. It was more about having to go through another round of treatment, in the back of my mind I knew if I did need treatment it would not be as harsh as for the throat cancer. However, the nausea could have been an issue again and that is what got me down most last time and I really did not want more feeling nausous constantly that lasted several weeks.

Fortunately, that is not going to be an issue now, at least in the short-term, longer term who knows. We all live with the spectre of cancer over us, people like me, who have come through treatment just have a much bigger but diminishing sized spectre for 5 years after treatment. Then we are back to the normal risk level for people who have had the lifestyle we have had. As an ex smoker, someone who partied hard alongside working hard when younger I probably have an increased risk for many cancers. Alongside this though I am fit and exercise regularly, I have never been significantly overweight, peaking at a BMI of just over 25 a few years ago, which I soon got back to under 25, all of which reduce the risk of some cancers. I eat a healthy vegetarian diet which is another plus. In fact now I lead a fairly risk free lifestyle for cancers and most other health issues associated with aging. The question is, which will win out, the current healthy regieme or the less healthy previous regieme.

Normally time is not on our side but in this, time is on my side as it seems the case that the longer you survive after adopting a healthier lifestyle the more your risk diminishes. Which is why, that when I went to the doctors 10 days ago I had all but discounted lung cancer as a cause for my cough. When I wrote the last entry just after I had the X-ray I was very unsure about the outcome. Much of the time I was pretty confident I would be fine, I did have one day when my innate optimism struggled to be dominant but mostly I thought I would be OK. This fluctuation in optimism is pretty normal for me, in the period between check-ups I am predominately optimistic, just having slight dip towards pessimism as I realise a check-up is imminent, then as the check up approaches I return to optimism up to the appointment. On the day of seeing the ENT consultant I am definitely in a position of guarded optimism, by this I mean I expect to be OK but am prepared for bad news. This is how I was for the last week or so and in fact probably describes how life is for someone who has been through a successful cancer treatment. Your optimism for 5 years needs to be guarded as I see it.

Why, I am sure some of you are asking. Well as I see it being guardedly optimistic means I am more prepared for bad news and will be able to bounce back to optimism and come out of another treatment round all clear or more easily overcome all the other hurdles life can throw at you. I believe my innate optimism has helped me do so well cancer wise, even if it didn’t or hasn’t so far helped me overcome my fatigue. But I am sure I will overcome my fatigue in time, I just need to balance out activity and resting better than I have been doing for now. Trying not do things that set my recovery back, so no more falling of bikes or similar such things, well that is my hope.

Returning to being given the all clear yesterday and thinking about all the “all clears” I have had since my treatment I am always split between wanting to celebrate and not seeing the need or feeling able to celebrate. For me there is a sense of elation and numb disbelief that go alongside during the hours after the good news. It is as if you cannot process the good news all at once and your mind damps down some of the impact. A weird sensation, mostly pleasant but a bit disconcerting all the same. I don’t know if others feel the same or similar when they have check-ups, it would be interesting to find out, so if any readers want to let me know please comment or message me.

Now I have the all clear, I need to start thinking about booking time away. It is a bit complicated for the next month or so as I have a follow up appointment for my collarbone adventures, a cancer check-up at the end of Feb and some meetings about my volunteering with Macmillan and of course a few social engagements booked and no doubt more will be booked in over time, though of course these can be changed to accomodate trips away. This week seemed pretty empty 10 days ago, now it is fairly full and I am worried that I have overcommitted myself and will have to cancel some social stuff due to fatigue returning and biting me for being overambitious about my energy reserves. Time will tell and if I remember I will report back in my next entry.

Waiting for news again

Wasn’t sure whether to write this post or not but have decided to because it will help me process my visit to the GP yesterday or more accurately the possible ramifications. I am also writing this because this blog is about my life with and after cancer. So far most of it has been about life after cancer and hopefully it will remain so.

So yesterday, I went to the GP because I had a bit of a persistent cough and some tightness of the chest now and again, which hadn’t cleared up after fairly bad cough in early December. I wasn’t that concerned, thinking the GP would tell me to increase my asthma medication or change it. I wanted to get this sorted before I booked a flight to go away to a warmer place so expected it to be very routine. My appointment had initailly been planned for a day earlier, being cancelled due to my GP being sick. So I was booked to see a new to me GP yesterday, she asked a few questions then listened to my chest, got me to blow in a peak flow meter, took my temp, measured my pulse and blood oxygenation with various bits of technolodgy and the traditional stethoscope. The good news is that I don’t have an infection, my peak flow whilst slightly down for me is good. We discussed my recent medical history and further back. When she discovered I used to smoke she paused for a moment, wrote a few notes on the computer, then said she wanted to send my for a chest X-ray. That momenentary pause said a lot and it was clear why she was sending me this, to check whether there is a shadow on my lungs that would indicate a cancer or that she needs to look for other causes of my cough and slight tightness of the chest.

So I go home, have a late breakfast or early lunch and head out to get an X-ray. Now, I am in the waiting stage, where I have a week or so to wait on getting the result. This is the third time I have been given preliminary diagnositc tests for a possible cancer, so far the score is a one all draw for outcomes. I am fairly relaxed about this as in a way this wait is no different to the wait I go through in the run up to my regular check ups, that is not to say there is not some concern. Of course it is also different, in that it is for a different issue and one that could lead to a another journey through treatment.

Yesterday, someone said that they hope I get a positive result, which was nice and supportive. But this got me thinking and I commented “actually I didn’t want a positive test result, rather hoping for a negative result”, which would mean a postiive outcome if you follow my reasonsing. Certain medical tests are one area in life where ineffect failing them is better news than getting a positive result. What I don’t want to hear from people is the trite phrases “stay positive” or that “it will be alright”, it is not a good thing to say these and others to someone who has had cancer or is waiting for test results. No one I have met who has gone through the cancer experience likes hearing them. I also know how hard it is not to say these or similar because often social mores train us to say this type of thing. I remember prior to my cancer when finding out when people had cancer or waiting for result not being sure what to say and I expect others feels the same. I don’t really have an answer for you at the moment about what is the best thing to say because it can and does change depending on how I feel and who says it. MAybe just best to ask if the person wants to talk about it or not. One of the hardest things for me about getting the diagnosis is telling family and friends and wondering how they will cope with the news.

I don’t know what the odds are either way for the likelihood of the outcome of the x-ray and unlike with the lump in my neck I don’t really have a sense of what the outcome will be. When I had blood tests because a lump in my armpit about 8 years ago I was never concerned, knowing that I didn’t have cancer and felt that the GP was being overly cautious. This time I waiver around the 50/50 point not knowing what the outcome will be and being of an optimistic tendancy feel that if anything the X-ray will show that cancer is unlikely to not there. And if it is there, then I will get treated and after a bit of difficult time will as with the throat cancer come through it. That being said there is of course a smidgen of doubt. My intention however, is to still be here this time next years and subsequent years writing more blog entries for you to read or not.

So time to end this entry and walk to the supermarket to get a few bits of food and carry on as normal. I will walk the scenic route to the supermarket as always notice the good bits, which always improves whatever I am going through.

Another rotation is near completion

As I start writing this entry it is about 7 hours until midnight and the end of 2017, it will be closer to midnight once I finish. It is tradional or socially programmed into us that at this time of year people reflect on what they have achieved or accomplished, think about events and the general ups and downs of life and no doubt a myriad of other things. I too have done this previously and will no doubt be doing so during this blog entry.

So what I have I accomplished this year, very little if I am honest. However, I can and do see it as an achievement in making it through the year, assuming I manage the next few hours, without any new major medical issues. I did have the surgery to fix the collarbone again, but as the was due to a break in 2016 and had been planned for 2016 so I will treat it as a carry over from 2016. I remain cancer free, well free of any detectable signs of cancer to be strictly correct, again another achievement. Yet again, being honest this is really an accomplishment of the NHS from 2014 when ENT and Oncology teams delivered the surgery, chemo and radiotherapy that eradicated the tumours.

I spent two months in Dalyan which is notable more than an achievement. Possibly the one thing that I can truly say is an accomplishment is that the Snowcat photography was a success and admired by many. More importantly for me though is that I learnt a lot, it came at just the right time as I was towards they end of my post surgery recovery and got me active and looking forward again. I had written in my end of year blog entry at the end of 2016 that I still felt off sick rather than retired. I think the Snowcat photography project began the shift from feeling off sick into being retired, so about a year after retiring I finally began to feel like I had retired. Which brings me on to thinking about what to do next. I don’t fully know, well actually I don’t even partially know really. Whilst, I have started to volunteer with Macmillan I don’t know if this will be for the short or long term, hopefully it will be longer term but health issues or other events could prevent this.

Fatigue has been the big issue of this year and I think the collarbone breaks have masked some of the problems. I am still going through bouts of fatigue, some severe, there are fortunatlely periods of feeling OK. Since having the cold at the end of November into early December I have suffered really badly with fatigue. It is probably the worst period for a long while. But it might be that the collarbone breaks protected my from the fatigue because it stopped my doing too much so that my degree of fatigue is unchanged. In theory, the post-treatment fatigue from the radiotherapy should have faded away by now. For some reason it hasn’t and talking recently with some other people who like me are post-treatment I am not alone in having ongoing symptoms. Whilst it is rare, a small but significant minority do have fatigue symptoms for a couple of years or so. I am now in my 3rd year which is rarer but not unheard of. It is unexplained and tests do not show anything untoward, so proably connected to events of last 3 or so years and something I just have to live with amd manage the best I can. Looking back to my period back at work, I did very few full time weeks and when I did all I did was go to work and go home and collapse except for a couple of cycle rides. I think I probably could just about make most of a week through work and do nothing else I was then. I do remember though most days I would have periods where I was hardly functioning due to feeling exhausted for anything from a few minutes to an hour or so. This meant I wasn’t really coping and definitely was not working at the level I was before the cancer, so not able to do my job, hence my decision to seek and get early retirement.

But enough of this, back to the present, I am still riding, not that much recently as the wet and windy weather has put me off a bit. The two collarbone breaks, well the second one mostly, have dented my confidence about riding in poor weather. I am sure I will get back my confidence as I do miss it when I am not riding and do wonder if some of the recent fatigue is connected to not riding as much. I can’t prove it and the evidence is scanty to non-existent, but I do feel that when I do hard exercise in limited and regulated amounts that it helps me overcome the fatigue. I must admit that this ongoing fatigue does get me down at times and has led me to consider whether I am depressed and discussing this with my GP. I do not believe so and when I did a battery of tests 18 months ago was not and I do not feel any different to then. Depression is something I am very aware of and know that people with serious and ongoing health issues are at greater risk of. My career could be a double edged sword here though, I am aware of the signs and symptoms of depression so arguably am in a better position to avoid depression. Conversely, being a mental health professional the evidence is people like me think I can manage it myself and don’t seek appropriate help. When I was referred to adult mental health services 3 years ago during my treatment this was a subject of discussion and I said then that I would seek help if I thought I needed it again. So far I haven’t needed to but would if I thought it would help. I think it is just time and finding the balance between being active and resting that I need.

So what are my hopes and aims for 2018. Well I am not going to make any resolutions, mostly people make them and break them very soon and then feel bad about it. For myself I hope to remain cancer free, I hope to suffer less fatigue, I hope to travel abit and of course go back to Dalyan. I would like to meet someone and start an ongoing relationship. I would like to end the year with a clearer idea of what I want from the future, but if I don’t that will be OK and I will continue working out what next. For others, well for friends and family I hope they have a healthy and happy 2018 and beyond. I also hope that the farce of BREXIT collapses or at the very least we have another referendum to vote on whether to accept the deal agreed or remain in the EU. And this you will be relieved to read is the end of my 2017 blog entires. Happy New Year all.

3 years of bonus time

Yesterday, I marked the end of my treatment with a walk, going through Queens Park, along a few roads and past the cancer centre before walking down to the seafront. 3 years ago, I did not have the energy to walk past the hospital, even if I wanted to do. I went in, sat down feeling exhausted and waited my turn for radiotherapy and hoping they would be running late so I had longer to recover before the walk home. Leaving slightly ahead of my booked appointment time because they were slightly ahead of schedule, so I didn’t get all my hoped for rest. I was pleased that my final does of radiotherapy was in my favourite room, the one where my treatment started. After the treatment ended I stumbled home and was happily surprised when shortly after I arrived home some friends turned up to celebrate the end of the treatment with me. My celebration was basically putting on some burn cream, you are not allowed to during the radiotherapy because it interferes with it. I probably took a dose of morphine to cope with the pain of talking too but I cannot remember now. Many of the memories have blurred with time so details and the chronology are now unclear. I can remember the pain and nausea in a reasonably detatched way now and the stiffness and pain in my neck and shoulder are a reminder of this time, strangely a often welcome one as it means that all the horrors of the treatment were worthwhile.

Over the last 3 years a lot has happened that would not have happened for me if the treatment had not been successful. When I went into the treatment I was convinced I would have the cancer eradicated and so this has been the case. I didn’t really look into the likelihood of me being one of the survivors at the time, just assuming I would be. It was later, probably about a year later that I began looking into the statistics of survival for people with the different stages of my cancer. Discovering why my consultant and all the other medical professionals were telling my how well I had done and looking slightly surprised that I was (My skills and experience of reading people in my work, meant I was always very aware of professionals underlying thoughts about me and my prognosis, during my treatment they often displayed miniscule signgs it wasn’t a good as I believed, this did not deter me from my strong belief I would be OK) I don’t know why I was one of the fortunate ones and probably it is unknowable. I do think though that certain things helped, firstly the excellent medical care I got from the NHS, that I had a surgeon who was upto date and with my consent performed cutting edge surgery (excuse the pun), he actually used the term, innovative but cutting edge has a better ring to it. There is an emerging body of evidence that for some unexplained reason, people who have a positive outlook are likely to have a better outcome. I was aware of this when I was diagnosed and went into treatment but it wasn’t the reason I was positive about the outcome throughout the treatment. During the period of diagnosis and treatment I was pretty certain that I would survive. Two people in particular helped me by example, my aunt and a colleague. Both of who had a positive outlook and were not going to let cancer take away their enjoyment of life. Sadly both have now died, but before they did both in different ways gave me encouragement, support and an example of how to live with, during treatment and after cancer. Sadly for them, the “after cancer” was not long enough as both developed cancer again.

In the 3 years since the treatment ended I have mostly enjoyed life and whilst I still have ongoing fatigue issues my life is good. This Christmas is the first one since 2012 that I have spent in the UK and not been ill. 2014 was spent enjoying or was it enduring the ongoing effect of treatment and side-effects of the chemo and radiotherapy. This continues for upto 2 weeks after the last radiotherapy treatment, with the radiation and chemotherapy wotking together to continue to kill the cancerous cells. Then I had Xmas 2015, with a recently broken collarbone, followed in 2016 with a not so recently broken collarbone, which was not healing and my surgeon was hesitant to operate on due to potentially very serious complications. Fortunately, when it was operated on the complications were avoided due to his and his teams skills. So this Christmas is being spent willout a major health issue, just the lingering afer effects of a nasty cold. It feels good to be well for Christmas.

I never particularly like this time of year and often worked on the day. I have been abroad several times and so avoiding the seemingly mandatory celebrations. This year, being without major health issue looming over me I have been very determined I want to spend the day alone at home, doing what I want when I want to. I am aware people will be upset that I am not joining them, worried that I will be lonely etc. Well, for me, being independent is a sign that I am returning to health and normality. I had thought of going away this Xmas but that didn’t materialise, so being at home enjoying my own company, possibly going for a walk later is perfect. Not having to put up with the TV others want which I don’t like and vice versa. I will be spending much of the day listening to music or the radio, reading etc. Will cook food that I like and want to eat rather than eat the traditional Xmas fare. Basically, I will seflishly be doing what I want to do and I feel no guilt about this. I am happy for everyone who enjoys the day to do the traditional big gathering and have fun, but for me it is not my first choice way of spending the day. I am relishing the fact that I feel strong enough to stand up to the tyranny of the tradition of celebrating Christmas in a proscribed way. It is another sign that I am further along the way to my normality after the turbulent events of the last 3 years.

3 years into bonus time I can honestly say I am feeling in a good place, feeling ready to move forward again rather than tread water as it sometimes seems I have been for much of the last 3 years. I have started volunteering for Mcmillan. This year I got involved in a local charity event, taking photographs to promote it, some of which were sold to raise funds as part of the event. Whilst this did help the charity it was not a totally alturistic act, it was part of my rehabilitation back towards being a more active member of society, one that gives rather than just takes, which is how I felt I had been since July 14 when I found the lump. I am not sure what this year will bring or the years that hopefully will follow will bring. I do think though, that I can be a contributor to society again, rather than just a drain on society. Life is feeling pretty good at the moment, not perfect but with the potential of getting better again as my health continues to improve. So with a Bah Humbug, I will wish you all the festive season you wish for and ask that you are pleased for me that I am again able to enjoy the festive season I prefer.

Check up and subsequent bug and another silver linning.

Well, the check up came and went 10 days ago. Always a strange time for me. I don’t expect to get bad news but have to be prepared for it. So here I am sat indoors nice and warm looking out at frost covered roofs feeling rough. For the first time since my treatment I have been laid low with a stinker of a bug, I am slightly blocked up, headachy, listless and frustratedly wanting to get better sooner rather than later. I think I would be having a full blown cold, but due to the treatment I don’t produce mucus in the way I used to. This means that whilst my nose has that tightness you get when you have a cold, I am not producing litres of snot. So I have found another silver linning to the cloud of my cancer.

Being ill with something as mundane as a cold strangely is a bit of a relief, since the diagnosis I have had a few medical interventions as you all know. This time, I am ill and don’t need to go rushing off to see a medic, instead I just have to sit it out and allow myself time to get better. Of course with my history of pneumonias striking after a cold I need to self monitor that it doesn’t go to my chest and I succumb to another bout. I think it is unlikely though.

Whilst, I am not rushing to the doctor for this, I am waiting for blood test results, this is to see if there is an underlying cause for the ongoing fatigue. My consultant, at the last appointment thought that I should be by now over the post treatment fatigue so advised I went to see my GP. I was unable to continue with my previous GP as he has left the practice, which was a shame as I liked him and he knew all of my history of the last 3 years. Fortunately, the new GP seems as good, again he is young, keen and informal in manner so I am sure I will get equally good care from him. Hopefully, I won’t need to be such a regular visitor though. I go back next week for the results of the bloodtests, which will if I am fortunate give a simple answer to the fatigue and/or show nothing serious is wrong.

Alongside the medical appointments I went to an event about “living with and after cancer”. This was a good event, I caught up with a few people I knew and have started the process of being trained-up to run the HOPE group, you regular readers will no doubt no remember, it is the one I did for people post diagnosis and treatment for cancer. When I completed the group it was mentioned to me that I would make a good facilitator if I was interested. So two and a half years on, I finally feel I have the distance from my cancer to become a facilitator and will hopefully be trained early next year.

What else has been going on, well I caught up with a friend last week, which was lovely, we went to Hastings to look at the refurbished pier, it was partially destroyed in a fire some years back and reopened some time ago. It is well worth a visit. I took a few photos but haven’t got around to processing them yet. Since this trip I haven’t done much, I was at the beginning of feeling rough then and so didn’t make any arrangements for early week. So this week except for a trip to the supermarket has been spent tucked up at home waiting to get better, so not a very exciting one. Strangely though, a fairly satisfying one, being laid low by the common cold seems a return to normality.