End of the waiting

Xmas came and went, fortunately, I went down with a cold so retired to my sofa for much of the festering season, spending most of the time listening to music and reading when I felt up to it. As I got better I went out for walks and caught up with a couple of people after most of it was over. Throughout much of the time, there was in the background and sometimes in the foreground the concern about the swelling on my jawline. As it hadn’t really changed since finding it I was slightly less worried than when I found it. Whether this was based in reality or just my default state regarding the cancer of being optimistic whenever there is a glimmer of hope I don’t really know.

Waiting for an additional check-up is different from waiting for a routine check-up, yet it is the same, confusing and contradictory that this might sound. There is, of course, the anxiety of what the specialist might tell you at both, for the routine ones you, well I have got into a routine of worrying for a day or so a few weeks before and then relaxing about it again, well consciously. Of course, there is underlying stress but it doesn’t really impinge on your consciousness that much and I can get on with my life. With an extra check-up, because you are concerned about something, the normal way of dealing with the wait doesn’t really work, because the reason for the check is that you have discovered a change and are unsure whether it is something to be concerned about or not. I suppose it is a bit like when you go for your first post-treatment check-ups, you are entering unknown territory in many ways.

In the last couple of days before the check-up, I was trying to keep myself occupied and distracted and pretty much managed to. The weather was OK so I was able to get out for walks, I returned to the routine of doing top-up shopping, walking to the supermarket the long way round when I felt unsettled. Most of the time though I was able to carry on pretty much as normal and on the morning of the appointment I forgot about it and it was only when I checked my phone calendar to book something else in that I remembered it was later in the day.

My appointment was the first one for my consultant after lunch, so I was seen bang on time. I explained why I had asked for the appointment, he examined me briefly and told me it was a worsening of my lymphodema (or a collection of fluid for those like me until I began treatment who didn’t know what lymphodema is) and not a return of cancer. Which was a relief as you may or may not be able to imagine.  When I said I was sorry for wasting his time, he told me that I was right to come in as if it had been a return of cancer it would have greatly increased the chances of a successful outcome. I now have to massage a bit of cream into my face every morning using a particular movement that will help the lymphodema drain. Apparently, it is not uncommon for the lymphodema to be fairly stable for a long time and then change, which it has in my case, I have had a slight swelling on the left side of my jaw since the treatment. It is just more so at the moment, hopefully with the massaging, it will go back to how it was. Whilst there I mentioned I still had a bit of vertigo now and again, he gave me a leaflet of exercises to try between now and my next appointment, which he thought would help. So all in all a pretty successful 10 to 15 minutes of his and my time I think.

It was as I walked out and back towards home that the relief fully sank in and when I got to Queens Park I felt an irresistible urge to sit on the bench I sat on when I got my first all clear nearly 4 years ago, so I did. As it was back in March 14, it was a cold and fairly clear day again which is possibly why my subconscious mind wanted me to sit down and ponder life for a few minutes. So I sat and looked at the lake, the sky, noticing the people wandering around, the birds floating on the lake, the ones waddling on the banks and of course watching the one flying about. Just a normal sunny winter day, with nothing out of the usual going on, which for me was different to my walk through it on the way to the appointment 30 mins or earlier. After some minutes sat there I decided it was too bloody cold to sit there any longer so I wandered home to collect something and then wandered into town to drop it off.

In between all this, I messaged a few people the news and one asked me if I was going to go out to celebrate, I said I wasn’t as it seemed a bit late to organise something. So on my return home I baked a cake to celebrate and had a small slice after my dinner and have had another with a mug of tea as I write this. I don’t think I have ever specifically gone out to celebrate getting an all clear, I am not sure why this is. Maybe it is to do with being single, if you have a partner, you have someone to go celebrating with and would not have to plan before hand. Being single I don’t feel you can put a few friends on standby to go celebrating and expect them to hold an evening free just in case. And what do you and they do if you don’t get an all clear, still meet up and either pretend everything is alright or spend the evening speculating on what happens. Not a very enticing prospect I feel.

Another reason for not arranging to meet people is that sometimes in the past after a check up all I have wanted to do is have a peaceful evening at home. I probably have been out after a check-up, but that would be by chance rather than planned or for another reason unconnected to my cancer check-up. But it has got me thinking about how in just over a years time I will have my 5 years check up and vaguely wondering whether I would want to plan something beforehand or not. In many ways it feels a bit presumptuous to plan a celebration before you get the results so I probably won’t.

So I am now wondering what to do over the next few months, I have my volunteering and have commitments for this booked into mid-Feb at the moment. But after then I am a bit of a free agent and am wondering what to do. It is a bit early in the year to head to Dalyan but I might head somewhere for a bit of time in warm sunny weather. Something to think about over the next week or so. I hope everyone reading this had a happy new year, other festivities if celebrated and has a healthy and good year ahead.

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Schrödinger’s Cat and living with and beyond cancer

I am sure some if not most of you are wondering about this entry’s title. Or maybe you aren’t. Well like the proverbial cat people living with and beyond cancer are in a similar state to the cat checkups whilst the box remains unopened. It is only when the box is open that we discover the health of the cat. https://en.wikipedia.org/wiki/Schr%C3%B6dinger%27s_cat

So as a cancer patient in between check ups you are in a similar position to the cat until the box is opened, in that your state of health to a degree is unknown. It is only when you have the routine check ups that you get to discover whether you are cancer free or it is responding to treatment, which equates to the still alive state of the cat. The not alive state of the cat equates to cancer returning or treatment to control it have not been effective. I know this is a crude analogy and cancer patients don’t fit neatly into the binary options of Schrödinger’s thought experiment. However, the state of uncertainty between appointments does match the position of the cat whilst the box is closed, in that it is unknown.

Currently, after seeing my GP, contacting my consultant’s secretary about the swelling on my jawline I am in a state of uncertainty. When I contacted that ENT department to leave a message for my consultant I was immediately given an appointment date so in two weeks today I will be at the point where the box is opened. So my state of uncertainty is for a finite period which weirdly reduces the anxiety about my position greatly. When I noticed that the swelling on my jawline felt different last week, the initial shock and concern was about finding the change and the implications. This then morphed into a concern about not knowing whether it was something to worry about or not. Which I guess could sound a bit odd to many of you..

Living with or beyond cancer you get used to a degree of uncertainty and not knowing whether the next appointment will give good or bad news or you might notice an untoward change. You, well I have got used to a routine of where your anxiety levels about the cancer fluctuates in a predicatable pattern as you move up to and past each checkup. As you move further past the end of treatment, the gap between appointments lengthens and you begin to believe more, that you will remain cancer free for more of the time. Around check-ups, or in my case a couple of weeks before you have some doubts about getting good news at the check-up. Then after I relax into a position of being more confident that the cancer won’t be back.

Now I am experiencing the strange sensation of this routine being disrupted, when I tell people I can see that some of them are thinking that the first nail has been knocked into my coffin. Whilst intellectually I realise this is a possible outcome, I am mostly optimistic of the outcome if the cancer is back, choosing to believe that the next round of treatment will work and give me more bonus time. As ot whether the cancer is back or not, oobviously I am concerned enough to have gone to my doctors, I am also choosing to be as optimistic as I can be about this and hold on to the fact that the change in my face could be for a reason other than cancer.

Besides this interruption to my plans for the festering season, life has been trundling along well and I am mostly happy with my lot. I have been doing a bit of volunteering, seeing a few friends, catching up with a couple of ex-colleagues. Braved a very small Christmas do at my neighbour’s, which was an opportunity to see her adolescent cats, who are two of the several cats who visit through open windows during warm weather. Most of my shopping is done and I have treated myself to a gift to me, splurged a bit but thought I deserved it. Well as they say at the end of a certain cartoon “that is all folks”, well for today.


Good, bad and uncertain news

So here I am sat in a nice warm house on a cold December day as we head toward Xmas, feeling very fortunate.  Compared to many I am in a very good position, I have enough to eat, a roof over my head, enough money to live on.   Regular readers will know of my distaste for the festive season, as an atheist I see no reason to celebrate an appropriated pagan festival.  As a veggie, the food is not appealing. So I tend to ignore it as much as I can and let those that enjoy it, do what they do and have their celebrations.    So if you enjoy all this  I wish you a good festive season and for those like me, I hope you find a way to insulate yourself from is as much as you can. 

So it has been an up and down few weeks, a few friends have been going through difficult times which is sad, especially when all you can do is offer a sympathetic ear as and when they need it.  Someone I know through volunteering has been told their cancer has returned, which is upsetting.   Last weekend I  was thinking that I was escaping this misfortune, then the universe reminded me that it is random and uncaring.  First my surface pro died, I could replace it for an exchange unit at a reasonable price or buy a different more powerful laptop for more money. Initially, I was going to go down the new laptop route but now, financial considerations are pushing me to get the exchange unit.  A few days after this my photo printer started playing up, expensive to replace.  Fortunately, after a bit of investigation, I discovered the problem was faulty ink cartridge and normal function has been returned.  

Some of you will remember I had an abnormal thyroid function blood test result 6 weeks or so ago. Well, the retest came back OK which was a relief.  Not so good though is that yesterday morning whilst shaving I noticed that the left side of my jawline was a bit swollen since my treatment there has always been a bit of puffiness there but it has become more swollen over the last week or so. If I was shaving every day I probably wouldn’t have noticed, fortunately, since retirement, I shave as and when I feel like it, so it was several days since my last shave and the swelling was very noticeably different to my touch.  Anxiety provoking for someone in my situation.  It could be nothing, just that my face has swollen slightly and will subside again and normal for me and something which has happed before that I hadn’t noticed due to the irregularity in my shaving routine.  It could be an infection or it could be a return of cancer.  Went to GP and he was uncertain, so we are going to monitor for 10 days or so and if the swelling is still there, ask my ENT surgeon to have a look at it.  Yesterday I was a bit perturbed by this, today I am more relaxed about it, well most of the time but doubts and fears do flit through my mind.  I think it is unlikely to be a return of cancer but if it is. well, I will get treatment, have it eradicated and carry on as I am now.    When I mentioned to the GP that I wondered if I was overreacting he was definite that I had done the right thing, logging it and monitoring it was important and was pleased I had made an appointment immediately.  So if you find a lump, go to the doctor, they will monitor and if it doesn’t go away in a couple of weeks they will refer you on for prompt treatment.   My cancer became so serious because I ignored sorethroats forsome considerable time and didn’t notice the lump in my neck for ages.  

This week the HOPE group finished and it was good to have completed my first facilitation of a complete group.  I have really enjoyed doing this and from the feedback, it was well received and the participants found it helpful.  I certainly noticed a change in them and how they had moved to a more positive stance.  The peer evaluation work is still progressing and hopefully, the first project will be completed early next year.    My fatigue has lessened over the last few weeks and I haven’t had a totally energyless day recently.  I have been getting back into bread making and think I am getting better and have had a few loaves I am pretty happy with.  Also continued my cake baking and having some success there.   

 So as you can see from the above it has been a bit of a mixed week or so since the last entry.  I have had lots of good bits and enjoyed eating the food-related good bits.   The bad bits I experienced have not detracted from the good bits, I have just seen them as part of life. For my friends, the bad bits have been much bigger than mine so are having or have had much bigger impacts and I wish them well and hope the difficulties are soon something to look back onto as they move on with life.  My swelling is definitely to my mind an uncertainty and not bad news and most likely will turn out to be nothing.  This is why I stole a film title and modified it for the blog title.   If you are one of the majority of humans who enjoys Xmas, I hope you are having a lovely time in the run up to it.   I might venture out of my cocoon protecting me from the festering season to be social now and again.


World Aids Day 30th Anniversary and other anniversaries

I remember when Aids first came to the notice of the mainstream media and how a few years later the first World Aids Day was held, at that time Aids was a death sentence and I knew a people who died because of it.  Thanks to the work of many dedicated researchers around the world, Aids has become a treatable condition that can be managed longterm and there are some researchers who believe a cure could be possible.  This is fantastic news for many reasons, that people do not get an Aids diagnosis and have to view it as a death sentence is obviously the primary reason.  A less obvious reason but for me almost as important it shows what a combination of government-funded research, charitable trusts funded research and big pharmaceutical companies can achieve when working towards the same goal.   

In the cancer community, especially on the internet there is much talk about big pharma holding back a cure for cancer.  This is a patently stupid conspiracy theory and is more a reflection of the people coming up with these ideas than reality.  For a start unlike Aids, cancer is not one condition by hundreds so there will not be one cure or treatment to keep symptoms undercontrol, there will eventually be many.  The other common argument is that by witholding the cure big pharma earns billions from conventional treatments. Again this absurd, a drug company that developed a treatment for a cancer that was close to 100% effective would make massive profits from it, especially if it was easy to administer and prevented the need for costly longer term treatments and hospital admissions.    We are at the point where treatments like this could be with us in the next few years for some cancers.  It could be that in 10 years time for my type of cancer and how advanced it was because I didn’t go to a doctor because of my recurring sore throat, rather than having the surgery followed by concurrent radio and chemo therapy, hospital admissions etc., it could be treated by taking some tablets or having occasional IVs as an outpatient.   As long as the new treatment cost less than the traditional treatment I had, once it passes all clinical trial and is given a licence, it would soon become a treatment of choice and my the shareholders nearly as happy as the successfully treated patient. 

4 years ago today I was admitted into hospital because of side effects from the chemotherapy, I was nauseous and vomiting up everything I ate and drank.  Being me, I had not wanted to trouble the hospital over the weekend and thought I could wait until Monday to get additional help to manage it.  I was wrong and ended up being admitted to give me the physical care I needed and a referral was made to mental health services because I was not coping emotionally.  For me, it was not so much cancer that caused the problem, but the treatment side effects, I could not see how I would get through the treatment.  Then, I believed if I got through the treatment I would be fine and become cancer free and when I started my treatment thought I would be one of the people who got through it OK.  Well, I was wrong and as many going through the harsh but often effective treatment for my type of head and neck cancer I needed additional help with managing my distress and suicidal thoughts that emerged over the weekend before my admission back into the hospital.  So I had 4 days in hospital, some on a drip rehydrating me and pumping anti-nausea meds into me and later just having my fluid intake monitored.  

It was obviously a difficult time for me, yet once my nausea had been controlled to a degree, I continued to feel nauseous throughout my treatment but I no longer vomited which was a great improvement.  As said before, my concern at this time was getting through the wrong and,  not of still having cancer after it.  It was only after treatment ended that I had serious doubts that I would be cancer free, my thoughts even then were along the line of well, if I need more treatment to become cancer free that is OK, I will get there.   It was in the months after the treatment ended and before the first scans and all clear that doubts first surface about cancer proving fatal, my colleague with a head and neck cancer being given a terminal diagnosis after my first all-clear was a definite blow to me.    Next week in the HOPE group we are covering “fear of recurrence” which is a common concern for people post-treatment and being told they are clear of cancer.   

Living with or beyond cancer is a precarious existence and check up are particularly a time when thoughts of recurrence surface.  Imagine if you have to make a journey over a ricketty bridge over a gorge on a regular basis with the knowledge some some people fall off it and get injured or die.  Well going to a check up is like this, you going in knowing you could get bad news and have to prepare for it.  You may or many not expect bad news, either way though the shadow of the return of the cancer or the pallative treatment you are taking is no longer working looms over you.  It is a reality that is there for all people who have had or still have a cancer.  Most of us live through life knowing that one day we will die but living in a state of blissful denial of this, choosing to believe or is it delude ourselves that we are impervious to mortality.  People who have a cancer diagnosis have had there mortality smack them in their face with baseball bat or similar hard object.   

When you get this unwelcomed smack in the face, there are many ways you can react, these include denial, fear, optimism are three broad descriptions of some of the feelings.  I have had all three of them and others at various times during my journey from diagnosis to living with cancer and now living beyond cancer.   No doubt at various times I will experience these feeling again over the years to come, hopefully many times over the next couple of decades of life.  However, I know that whilst the odds are very much in my favour I could be one of the unfortunate ones who has a return to living with cancer.   Does this stop me enjoying life, having good and bad days, thinking of possible futures, hoping for things.  No it does not, it just adds another layer of thoughts to the hopes and fears we all experience when we think of the future.  People with cancer like the rest of the population dream of, hope for and work towards a better futhre whatever that maybe.  We do it with the added awareness that the universe is a random place and whatever we plan and prepare for can be snatched away.  Does this stop us, at first I think for most it does early on in our diagnosis, at the very least it impedes our ability to plan beyond the short term, however, as you get used to living with or beyond cancer, you start to plan longer term again.  

People have commented several times that I seem very content with my life and accepting of my cancer, making the most of life.  They are right I am find ways to enjoy life because I believe that by doing so it can only contribute to my chances of survival. There is as I have written about before evidence that people with a postive stance have a great chance of survival and or a better quality of life after cancer, so selfishly I actively chose to be positive.  Having used the tools I learnt in my trainings in systemic pyschotherapy to assist me in find positive aspects of a difficult situation, the silver lining to my cancer cloud, I am of the belief that I have coped better.   Most people do not have these tools, which is where the HOPE group comes in, the intention is to help people boost and or regain their resilience and so cope better post cancer. 

Sometimes a memory comes back unexpectedly, cycling and weather

When I start each entry I rarely think about who may or not read it, just get on with it and it is only when I near the end of the writing and poor proofreading that I wonder who if anyone might read it.   I started this blog partly to keep people in touch with what was happening with me just after diagnosis and prior to the surgery that began my journey.  I also began it so I had a space to record my thoughts about the cancer and other things that went or go through my mind.

I entered into treatment with, I was going to type eagerness, but that is not right, hopefulness is not right either and whilst there was trepidation or aprehension it was also accompanied with curiosity about different aspects of my treatment.  Having a CT scan, MRI, Ultrasound for the first time was very interesting, the preparation for surgery was also intersting and sitting/lying on the trolley in the prep area was made easier by my curiosity.   Radiotherapy was also made easier at first due to curiosity, in fact the worst bit about radiotherapy was getting the mask made that kept me still during it. After going through that I was better prepared and with the help of lorazepam to help with the anxiety it was fine and almost enjoyable lying there listening to a combination of the machinery sounds and music.  Sometimes it was with eyes closed focusing on my breathing or doing a body scan ( a mindfulness exercise) others it was with my eyes open looking through the mask and at the blurry world beyond.

What has prompted these thoughts today, well I was out on my bike for a ride earlier and the weather was really similar to that of my first ride after the chemo and radiotherapy ended.  I was riding back towards home when I realised I was passing a corner where I had to stop on the first ride, due to a combination of all the mucous and a coughing fit making it impossible to carry on.  Also, I think the feeling of the cold damp air on my throat also prompted the recall of this memory.  Thinking back to then it seems like a life time ago whilst being yesterday.   This time of year is full of many memories of treatment, a year later becoming physically and mentally exhausted due to trying to carry on normally as if nothing had happened.  Looking back, I see that what kept me going was a mixture of adrenaline from the stress I was putting myself under and bloody mindedness.  Of course at the time I was trying to pretend to myself and everyone else that I was fine, which whilst true sometimes mostly wasn’t.

Four years ago this time next week I ended up in hospital , this was due to not seeking help earlier from the medical professionals, due to a mix not wanting to bother them and a belief I should be stronger and able to cope.  I wasn’t and ended up having suicidal thoughts and dangerously dehydrated due to the nausea and vomiting that I was suffering from, so much so I wasn’t well enough to have chemo and the hospital gave me the option to postpone radiotherapy for a day.  I went ahead with it then was admitted to hospital and referred to adult mental health services.   A scary time for me but thanks to the NHS, family and friends I got through this.  A year later I was off sick again, due to trying to do more than I had energy for.   This year I am currently getting past a deep bout of fatigue and working my way back to more normal levels of energy, so maybe I do learn eventually as this year I am getting stronger as we head to December and the festering season.

Last week, it was fairly busy, Tuesday I co-facilitated the HOPE group with an observer there to do the final assessment on my accreditation to run the group.  I passed which I am pleased about and whilst I expected to it was a relief to do so.  The next day, I was up in London attending a seminar about travel insurance for people who are living with or beyond cancer.  This was fascinating and my bit where I spoke about my travel insurance experiences was well received.   I discovered a fair amount about how many insurers assess risk in away that is not helpful for people like me.  How that the big problem for people with (according to the insurance industry) an impairment, which means any health or disability issues.  Being me, I had to challenge them about using the deroragatory term and suggested they used additional needs rather than impairment.   However, to be fair to them, all the people present were eager to help people with or past cancer get a fairer treatment from insurance companies.  Travel insurance risk is assessed with algorithms and whilst the specialist insurers use a couple that work better for cancer patients the big companies don’t at the moment.   Change won’t happen overnight but I think with a bit of good fortune and perseverance from Macmillan it will happen. There were some really good ideas put forward about how to take things forward.  All the insurance professionals have signed up to attend further meetings so it will go forward I believe.  Moving on to Thursday, I was at a peer evaluators meeting where we reviewed some interviews and looked for themes in them and did a bit of review of progress and allocated some more interviews to people.

So in three days I did three different strands of volunteering directly related to me developing a cancer.   A little over 4 years ago if someone had told me this is what I would be doing with my life I would have been very sceptical to say the least.   Then, I was very focused on work, there was some thought about retirement and vague planning or more honestly daydreaming about the possibilities of retirement.   But in reality I was more focused on work. Whilst there  were opportunities to go for early retirement I hadn’t requested to be considered, partly because I didn’t think they would let me go but mostly because I was not ready to give up working. My job was important to me because I thought it was worth while, I was enjoying it and colleagues valued my contributions.   Things I put into place to this day have protected my team from cuts, in fact it has grown.   I was laying down the foundation for this growth when I got diagnosed and others took up the reins and took them forward.  Whilst I miss my work I know I am not able to do it was well as I would like to and it was attempting to do it at the level I was prior to cancer and failing that led me to seek early retirement as part of a larger organisational restructure.

Two and a bit years after retiring I think it was totally the right decision.  When I was told I could retire, it was a mixture of relief and sadness that dominated.  Breaking my collarbone the second time about a month before I was due to retire was a complication I didn’t plan on or expect and it meant that for the first year it still felt like being off sick rather than retired.  Now though I feel like I have moved fully into retirement. I have been doing the voluntary work with Macmillan for a  bit over a year and it is  heading towards 18 months ago that I got involved with doing the photography project of the cat charity, which was the first bit of volunteering I did post retirement.   Whilst I can’t say I have fully adapted to my new stage in life, I am content and more comfortable with, feeling happy with life.  I have enough on to give me a sense of feeling fulfilled and that I am contributing.   Socially, I would like to be a bit busier but sometimes I find I don’t have the energy for it and cancel stuff, which possibly gives people the idea I don’t want to socialise, which is not the case.   I do get a bit anxious about some social situations now, with a tendancy to introversion at times, which for someone who was always out and hated staying in is a bit of a turn around. In years past I would be out in busy pubs, seeing live music etc, now if I go out I prefer some where quieter, where you are able to talk.  Also, I would like to meet someone and get into an ongoing longterm relationship.  Whilst I am hopeful, I feel it is unlikely to happen in the near future, it is definitely harder to meet people who view you as a potential partner as you get older I think, the cancer doesn’t improve the chances either.  I guess, though, as when you look for something you can never find it and then suddenly it is there in front of you, maybe relationships can be the same.

So this is me this week. Life trundles on, it is mostly good and I am fortunate that it is so. Many people I know are not have a good time which reinforces by feelings of being fortunate.   I have many good things, I am about to cook an evening meal and will go to bed not feeling hungry in a warm house, many many people will not have this tonight.  So whilst 4 years ago, I had an uncomfortable brush with my mortality I escaped this mostly unharmed and enjoying my life.  I could focus on the bad things that have happened, I choose not to,  I acknowledge them and whilst they are often in my thoughts, they do not take away my recognition of my good fortune or prevent me seeing and enjoying all the good things I experience day to day.

 

Another check up comes and goes

So on Monday this week I had a very orally focused day, in the morning seeing my dental hygiegnist for a tooth clean, something that is essential following my treatment.  Then in the afternoon I had a cancer check up, which went well as no cancer was detected.   Check ups are always a bit of a weird time for me, whilst I never expect cancer to be found I have to be prepared for bad news.  This time I went into it feeling very relaxed, in fact more relaxed than usual, strangely though the post check up time has been harder than usual.  I am not sure why this has been so, possibly it is because 4 years ago I was preparing myself for radiotherapy and chemotherapy, in fact it is 4 years tomorrow that I started both of them.

My ongoing fatigue issues and the mild dizziness, possibly vertigo might be a better term are not helping either.  Though strangely last weekend and for most of this week I did not feel fatigued, today though it has come back.  The vertigo also subsided pretty much and on Wednesday I went for a cycle ride and was not troubled by it.  Thinking about this, I realise that it effects me more when I am walking than it does when I am cycling.  Which I am a bit confused about.  My consultant didn’t have any definite ideas about what was causing this, he did acknowledge that it could be connected to the radiotherapy.  Watchful waiting again is the course of action.

So what has been going on besides the health bits, well I am still facilitating the group and had to do it by myself this week as my co-facilitator was ill and no one was able to step in at short notice.  It was challenging but enjoyable to do it, I felt it could have gone better but I think the people attending it found it helpful.   I am looking forward to the next one though, when my co-facilitator is back as I think it works better to have two people working together to run it.

Some of you might remember my blog entries about travel insurance and that I have been in contact with the case studies team at Macmillan.  Well Tuesday morning, just before I went to run the group I found an email in my junk mail about a seminar being organised by Macmillan about travel insurance and inviting me to attend it next week.  This invite could have been overlooked because my  usual contact was on leave and the person who emailed me is not on my safe senders list.  By chance I took a bit more attention of emails in junk mail so didn’t miss it.  The upshot is that next Wednesday  I am up in London talking about my experiences of travel insurance since my cancer diagnosis and treatment, the good and bad bits of trying to get insurance.

Next week is going to be busy with Macmillan stuff, Tuesday I am facilitating the group, Wednesday in London and Thursday at a peer evaluators meeting.  Ideally, I wouldn’t have choosen to have these 3 days in a row but life isn’t like that and you have to do things when they happen.  I am hoping my energy levels will be OK through out this, I have planned to have a quiet Monday and Friday either side and will not do a lot over the coming weekend.  Despite this I am looking forward to the busy week and feel that it will be much more manageble than doing two full days training, which did wipe me out mid October.  Time will tell and I will report back in my next blog entry for those who are able to face reading yet another entry from me.

Here is the UK, the 100 year anniversary of the 1st World War ending was prominent in the news last weekend and then the news has returned to being dominated by BREXIT.  Our PM has declared we have a deal, her cabinet reluctantly agreed it and then members of it started jumping ship because they didn’t like the deal so we are being told my May that we have this deal or a no deal BREXIT. According to those that know, MPs will not approve this deal so despite all the pundits making predictions no one does know what will happen over the next few weeks.   Something the BREXIT advocates forget is that one of the biggest drivers behind the EU (and in all of the earlier forms of it) was to prevent another European war, which it has been successful at.  The reasoning behind the first incarnation of it the European project was the Coal and Steel Community, was that countries that trade together are less likely to go to war. With the EU as is now becoming very apparent is that this aim has been extremely successful because many products use components made in several EU countries.  This makes a no deal a complete disaster for the UK and very unhelpful for the EU, which is probably why the EU have given us very generous terms in the proposed leaving agreement.  

Personally, I don’t want us to leave the EU and am hoping we get another referendum. If the vote is still for leaving the EU, now that people know the terms on which we are leaving then I will accept it, I won’t like it but will accept it.  My hope is that the proposed deal doesn’t get through parliament and the ensuing chaos will make another referendum inevitable.     As a remainer I have never wanted to leave the EU, but the impact BREXIT is already having in the NHS strenghtening my belief leaving the EU is bad for the UK.  Being part of the EU has been good for the NHS due to free movement of EU citizens and other single market benefits. The benefits to academia and research have been massive with the NHS directly benefitting in the development of new treatments. Cancer patients like me are more likely to survive because of pan European working on experimental treatment protocols and drug trials.   In many cancers, society is heading towards successful treatments to get rid of cancer or for drug treatment to control the cancer in much the same way that HIV is now controlled by drugs.   By leaving the EU we are making this harder to happen, it won’t  stop new treatments being developed it wil delay them and because of this many people could die prematurely.  

Matt Hancock, new Health Minister was recently asked if people would die because of  a no deal BREXIT and he said he couldn’t rule this out and conceded it was likely.   BREXIT is a looming disaster on many levels, it will make us poorer as a society and has done already to a limited degree.  That is will likely lead to premature deaths is an avoidable tragedy and is a shameful thing for a country to inflict on the population.   The European project was started to save lives, we are leaving it and risking lives thanks to evil shits like Farage, Gove, Johnson and Davis, who lied to the electorate, many of whom are now having second thoughts and politicians of all parties are ignoring this and not giving use another referendum to make an informed choice now the electorate has a better idea of what they are voting for. 

Well time to end and get off my soap box.  I will wish you all well and remind you to notice all the good bits, because this makes dealing with the shit going on much easier to bear.

Getting the balance right

Some of you reading this will be thinking the title to this blog entry is referring to my inability to get balance my activities with my energy levels.  And you would not be far from being accurate.   My fatigue is continuing to linger along with a fairly constant feeling that is similar to a bit of motion sickness, the feeling were you feel a bit woozy or fuzzy before you get nauseous or a mild version of that dizziness you sometimes get when you get up fast.   There are times when I notice I haven’t got it but much of the time it is there.   I have been wondering recently that has it got better or have I got better at coping with it and getting on with things, I am thinking it is the later.   I am not sure if it is connected to the fatigue or something else.

Like my recent thyroid function test result being low it could be an after effect of the radiotherapy, damage to my inner ear from the radiation.  I am not totally sure why it takes some years for it to become apparent but think it might be due to damage to the smaller blood vessels from the radiation having a calmative effect.  I could have totally got the wrong end of the stick here and as I am not going to google to find out will have to wait until I see my ENT surgeon at my next check up and ask him. Fortunately I don’t have long to wait, it is on Monday afternoon.  In the morning I am seeing they dental hygienist so I have delightful day in store where people are sticking thing in my mouth and or down my throat via my nose.

I have never liked going to the dentist or hygienist but the warnings of the increased risk of tooth decay following my radiotherapy treatment and potentially serious complications if I had to have teeth out, has made going the dentist easier.   I have always been an ardent tooth brusher and since the treatment this is even more the case.  So far my dentist and dental hygienist have been very happy with my teeth and complement me on my teeth cleaning.  Whilst this is nice to hear, I do it because I hate the idea of having fillings or teeth extracted and the praise does not alter my behaviour.   Yet each time I visit the dental practice I worry slightly that my teeth will have succumbed to the radiation.

When I got first diagnosed and the treatment side effects and after effects were explained to me as part of the consent process and more generally as part of the explanation of my care plan.  I took particular notice of the potential teeth problems whilst didn’t give much attention to other longer lasting effects.  The impaired thyroid function was not at the top of my concerns, something I was aware of so made sure I had my annual blood test to check it.   Whilst my fatigue could be connected I don’t believe it is as I have had fatigue on and off since my treatment ended.  The inner ear being damaged by the radiation seemed more of a theoretical risk than an actual risk, so whilst my symptoms could be down to it they could also be unrelated to the treatment.   Fortunately, seeing an ENT surgeon on Monday, means I am seeing the perfect person to ask about this.

Moving on, this week has been voluntary work focused. Tuesday I co facilitated the first group and it went well I think. I was a bit apprehensive about it before hand and felt I could have done better, made a few clumsy interventions but I am not sure anyone else noticed, so I am probably being a bit harsh on myself.  I really enjoyed do this and felt that my old skills were be nudge out of dormancy and think that over the next weeks I will find accessing them easier.  Running a group is a bit like riding a bike, you don’t forget how to do it but you need to get fit again and I need to get mentally attuned to group facilitation again.   I also attended an all day session for the peer evaluation project, which whilst tiring was a productive day  where we identified a few issues and ways to do it differently next time to avoid them.  We also began looking at interviews and identifying themes for our thematic analysis of them.

Because of doing both of these things I didn’t go Nordic Walking this week, as I wanted to save energy for them and not over do it.  Instead I have been getting out for a walk around town or down to the beach most days.  I haven’t been cycling because of the balance thing, I am sure I will be fine but it doesn’t seem worth the risk, will talk with ENT surgeon and see what the advice is.  I do miss cycling, though some of the recent raining  and or windy days have helps me miss it slightly less.

People keep asking me how I am and I keep replying with words along the lines of I am fine or Okay.  Which whilst I have a few health things going on I do feel mostly fine.  Sure the fatigue etc., is frustrating and stops me doing some things I am basically fine and feel that life is definitely OK.  This time 4 years ago I was still recovering from the surgery and preparing for the start of the radiotherapy and chemotherapy, attending lots of appointments at hospital, the cancer centre and GP surgery, making frequent visits to the hospital pharmacy and my local pharmacy collecting all the medicines I would be needing during my treatment.  I recall that I covered my dinning room table with them,  of hand I can’t remember how many different ones I had to take each day, just that it was well into double figures.  In the end I created my own chart to record what I had taken so I could keep track of it all.  Looking back to them and comparing it to now, it makes what I am going through seem pretty trivial and reminds me how fortunate I am still to be here.   So life is pretty good and the minor health issues and the ongoing pain don’t really stop me enjoying life.  Sure they prevent me from doing some things, but I can do other things instead, such as getting back into baking bread, teaching myself how to bake cakes etc, experimenting with roasting coffee.    And as I want to bake some bread now I am going to end now start on that.