When I had my planning CT ….so long ago, it seems, I got dotted with this!
Why couldn’t they at least have got it central? I’ve mithered about what I should do with it for a while. The obvious choices were to leave it or have it removed. Not so simple though. It’s part of me but I didn’t like it so eventually the time came to kill the dot and the solution was to camouflage it. So there we are. At the “should-know-better” age of 72 ……..
So thank you Samsara Custom Tattoo of Kendal and Keavy in particular…. a lovely young lady smothered in tattoos that looked like Liquorice Allsorts
It bloomin’ hurt ……but not as much as the radiotherapy
Some science about Radiotherapy. A lovely presentation by Rad_Chat who produce radiographer led oncology podcasts https://linktr.ee/radchat They are really worth checking out for some interesting stuff. More links at the bottom of this post
There is also a very informative post from Joss Harding who is a leading light in dental hygiene. Entitled Joss Harding – Importance of Evidence Based Oral Care and Management you can find it here https://radchat.transistor.fm/77 . She is the Author of a book that everybody’s dentist should have
There’s stuff on Proton Beam Radio Therapy, Rehabilitation and Rehabilitation, Mental Health…..allsorts
Thank you very much to RadChat for letting me use their images
Something to celebrate? Or something to just note down in the blog on the way to the MAGIC FIVE years?
Or maybe something to use as a vehicle to explore how to cope with life after treatment?
Please don’t call me a cancer survivor, a hero, a warrior, a conqueror, a victim.
“Survivor” suggests someone who has been through a hero’s journey, engaging the cancer in battle, enduring the horrific treatments to attack cancer, getting past toxic side effects and coming out the other side having conquered the killer. I have waged no war with this disease. That was my Doctors’ and support team’s job. I fought the treatment and I fought to remain sane through that treatment which did awful stuff to me and over which I had no control.
Neither will I have lost any battle because I didn’t fight hard enough should my cancer kill me. I will just die. We all do.
Having got that off my chest (which ,by the way, STILL bears the radiotherapy dot tattoo that is STILL , in my future plans, being transformed into something more acceptable…..
I’d like to do some exploring…………………..SO
“In cancer, survivorship focuses on the health and well-being of a person with cancer from the time of diagnosis until the end of life. This includes the physical, mental, emotional, social, and financial effects of cancer that begin at diagnosis and continue through treatment and beyond. The survivorship experience also includes issues related to follow-up care (including regular health and wellness checkups), late effects of treatment, cancer recurrence, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience.”
Survivorship is a unique and ongoing experience, which is different for each person and those close to them. A key to survivorship is to regain, as far as possible, the important aspects of your life before cancer, and to find new pathways to a satisfactory life going forward
There is an excellent article by ESMO The European Society for Medical Oncology here
There are a good few generalisations but nevertheless it’s a good read
I have a cancer buddy in the form of Hazel https://radioactiveraz.wordpress.com who I have bounced feelings and ideas off for most of the four years plus from my initial diagnosis. Have a look at her blog. It’s really worth looking at a different perspective.
I’m not a great touchy feely group, more of a self help get on with it person and avid Googler but I get a lot from peer support.
Nevertheless Maggies and The Swallows deserve a mention.
A lot of people get real comfort from group sessions and Maggie’s is excellent at this and really worth getting to know what they offer if there is one near you. https://www.maggies.orgThe Swallows Head and NeckCancer Grouphttps://theswallows.org.uk have a support line manned 24/7 by real people with a particularly good carers section. I’m more of a self help get on with it person and avid Googler.
With this in mind I have to mention a patient called Steve (I have his permission) who has just finished 6 weeks of chemoradiation for tonsil cancer. While not actually sailing through, accompanied by his favourite stoic philosophers, notably EPICTETUS* and Marcus Aurelius, to guide him day by day, he’s managed body and soul intact. He posted a pictorial diary on Macmillan which so enchanted me I asked him if I could steal a few of his cartoons for the blog
Some words accompany his drawings…
“All being equal, I’m positive. My consultant is obsessed with installing an emergency feeding tube, but I’m eating and drinking moderately well. Stoic philosophy serves me well”
“A mix of philosophy and meditation together with exercise and diet have got me to the final week. I know fate has been kind to me with regard to feeding tubes. Looking forwards to recovering and returning to work in a few months.“
*EPICTETUS. I had to look him up. He said “We have no power over external things, and the good that ought to be the object of our earnest pursuit, is to be found only within ourselves” which is quite apt, considering.
I’ll end this with the most common questions we get asked which are all about getting back to normal.
Will be I better two weeks after I finish treatment?
No….I don’t know why some oncologists say this. It’s patently nonsense. Perhaps it’s to give us hope? But then we are all different and some of us do sail through. I watched a presentation on Proton Beam Therapy given by the oncologist caring for me and he revelled in a tale of one of his patients going home to eat a burger the day he finished six weeks of Proton.
I don’t think many of us really are as we used to be but a straw poll of the posts on Macmillan seems to suggest that by six weeks post treatment we are out of the dark and by twelve weeks we turn a real corner. Me? I was really out of it for two weeks after. Slept and felt sorry for myself!
When will I be able to go back to work?
A good aim is for some sort of phased return at six months? I think you have to be realistic about this and just listen to your body.
When will I be able to eat?
I managed soft food by six weeks and a steak by 12 but some people take much longer
When will I be able to taste my food again?
Who knows? I have a friend who never lost her taste. I couldn’t taste anything much for six months.
It took me two years to enjoy one of my favourite foods which is avocado and three years before a Baileys tasted nice again. A trick I discovered was to blow air back up through my nose while I was chewing…..at least, then, I could identify what I was eating. So it’s really a case of being patient, not giving up, trying different things and not being too disappointed if things you could eat one day don’t taste good the next
Will I ever stop getting worried about recurrence?
I know all about this.
I’m a pessimist, I can catastrophise and I internalise so my torment is silent and my first year was a challenge. I spoke to Dr Banner about this once and he told me I would just have to learn to live with it. That’s a bit of a shocking statement. It actually jolted some sense into me, making me really examine why I was on tenterhooks all the time. “You have power over your mind – not outside events. Realise this, and you will find strength.”
So I had another read of psychologist Peter Harvey’s essay on cancer and I felt better……
Imagine a roller-coaster. Some of you will find this an exciting and thrilling image: others of you – like me – will find it terrifying and beyond belief that anyone in their right mind would willingly subject themselves to the torment of being transported at high speed and with great discomfort in this manner. However, I have chosen this image to represent the process of the diagnosis and treatment of cancer. On a roller- coaster, you will be strapped in and sent of into the terror, knowing that there is nothing you can do about it until you emerge, wobbly and battered at the other end. You manage by getting you head down and dealing with it as best you can at the time. It is only afterwards, when you are on solid ground again, that you can look back with amazement and view what you have experienced and marvel at your courage.
This seems to be an analogy for what happens after diagnosis and during treatment. The end of the ride is equivalent to the end of treatment. And this is where I want to start – after the treatment has finished and at the point where you can begin, bit-by- bit, to deal with all that you have been through and all that is to come. You may have had to endure months of treatment by knife, chemicals or radiation until you are probably sick of the whole business, both literally and metaphorically. Now is the time to heal, both body and mind. What I hope to do is to look in more detail at this process and make a plea that this critical stage is given more attention than it has had in the past.
I want to set out a framework in which to develop an understanding of what is happening. The first part of this framework is the recovery process that has to be gone through. For me this happens in three stages: recuperation convalescence and rehabilitation. I make this distinction to represent the different stages that have to be passed through and completed before moving on to the next one – each builds upon the other, although there will not necessarily be a clear dividing line between them
Let’s look at each of these in turn, beginning with recuperation. It is a widely held belief, often correct, that the treatment of an illness is meant to make you feel better. One of the many paradoxes of cancer is that, more often than not, the treatment makes you feel worse. This is not surprising – we cut and possibly mutilate, inject you with poisonous and powerful chemicals, subject you to dangerous rays all in the name of treatment. The aggressiveness and power of the treatments are a necessary response to the power of the disease, of course, but this very power takes its toll in other ways. These interventions place enormous physical strains on the body. There is often little time to recover from one treatment before
the next one starts. The treatments themselves may make it difficult for you to sleep and eat properly – two important parts of the body’s defence and recovery system. Some of the treatments drain your energy and resources to such an extent that it’s as much as you can do to put on the kettle. Add to this the emotional turmoil – the dealing with the impact and implications of the diagnosis, the uncertainty, the upheaval, the additional burden that you feel that you are imposing on family and friends, the loss of so many aspects of your routine. Emotional stress can be as energy consuming as any physical activity. After all that, is it any wonder that you feel wrung out and exhausted, without resources or reserves? All too often I meet people who, for quite understandable reasons, want to get back to doing the things they used to before the diagnosis but find themselves falling at the first hurdle because they simply find the whole thing too much. In my view, however smoothly your treatment has progressed and however well you have tolerated the various indignities to which we subject you, some time simply to recharge and recover – to recuperate – is absolutely essential. This is the necessary foundation on which to build recovery. There is no one right way or length of time to do this. It may be a few days or a few weeks – how long will depend on your state of health before your diagnosis, your age, the intensity, frequency and length of your treatment and so on. Take however long you feel you need. Recuperating is the very first step in a process of rebuilding.
The next stage is convalescence. This is a rather old-fashioned term, and I am sorry it has fallen into disuse, despite its association with bath chairs, rugs, the seaside and strengthening broth. The word has a Latin root meaning ‘to grow strong’ – rather apt under the circumstances. Once you have recharged your batteries, then you can begin to build up your physical and emotional strength. Again, there are no set rules or guidelines for how long this can take, but I firmly believe that to miss out this stage builds up problems later on.
Once you have recuperated and convalesced, then you have the foundation and the energy to start doing those things that you want to do – and, perhaps, to stop doing those things that you don’t want to do. I remember the patient of a colleague of mine who, once she had completed her treatment for her breast cancer asked for help to ‘.. sort out her job, her marriage and her cancer – and in that order.’ After eight sessions, she had decided to change both job and husband. Now your rehabilitation may not be as dramatic or as quick as that, but behind that rather clinical term lies a whole raft of important issues. Perhaps one of the most critical of these concerns the phrase ‘Getting back to normal’. I will argue that, if taken too literally, it can be more of a hindrance than a help and may become a burden which impedes progress. My reason for taking this stand is based on the observation that once heard, the diagnosis of cancer can never be forgotten. Whatever your prognosis, whatever your hopes, whatever your personality, the second that you know that you have cancer your life changes irrevocably. For many people, their sense of security and safety is undermined, their hopes for the future compromised, their trust in their world denied. I will return to the process of dealing with that
threat later on, but for now I simply want to acknowledge that to ‘get back to normal’ as if nothing has happened is an unlikely hope. But of course, within that phrase lie a number of other aspirations and messages. The whole process from diagnosis, through treatment to completion is entirely and utterly abnormal. For months your life is taken over by what must seem like an endless stream of clinic visits, of being prodded and poked, scanned and punctured, of waiting and watching, of hopes realised and hopes dashed. Your life has been taken over by others, run to someone else’s timetable. There is every reason for wanting to get back to some thing that is yours to control, yours to manage, back to something familiar. However, to try to do that when so much has changed is a difficult, if not impossible task. The trick is how to regain control and stability in a changed world. Rehabilitation, therefore, is a process of regaining and refreshing old skills, learning and refining new ones to enable you to live the sort of life you want. So what are the tasks that have to be completed in order to get through the process that I have outlined?
Regaining trust in your body
For many of you, your cancer will have been discovered whilst you were feeling well and healthy – either through some sort of screening programme, through investigations for another illness or for a relatively innocuous symptom. You may have had few – if any – times when you felt ill or had very troubling symptoms (I know this is not true for all, but it is a common experience nonetheless). And then you hear the diagnosis, that word that will be forever etched in your memory. How is it possible to have the disease that so many dread without feeling sick? This is another of the many paradoxes of cancer. Surely if you are ill then you should feel ill? This doesn’t last long however, because you then start treatment – and for most people that’s when they start feeling ill. All the treatments change your body in one way or another, sometimes permanently and often for a period of time that lasts much longer than the treatment itself. One of the consequences of all this is that you may lose faith in your ability to recognise when something is wrong with your body. After all, you may not have been able to tell that you had cancer in the first place and your body is now significantly changed so that there is a whole set of new and unusual sensations to experience. This is most marked in the period after treatment when the anxieties are still high and the uncertainty at a peak. Is this lump the cancer coming back? What does that pain mean? Should I go back to the clinic, just in case? Such anxieties are perfectly understandable under the circumstances. The rules have changed and you need to learn a new way of handling the aches and pains, lumps and bumps that you would not have given second thoughts to before all this started. This will all be made worse by a perceptual bias and hypersensitivity to these changes. You will be on the lookout for them in away that you were not before. This is a combination of doing what you have probably been told to do by the staff and your own real anxieties and fears. Previously insignificant and benign bodily changes become magnified and interpreted as a result of your immediate past experience. It is important to keep this in check and to give yourself so guidelines to
manage your fears. For example, if the pain lasts for more than a couple of days or gets worse, if there are symptoms associated with the site of your surgery for more than a certain length of time, only then might you need to call your doctor. Your consultant and specialist nurse will be able to give you guidance as to what they think will be important. Whilst many people quite naturally, and over time, learn to manage this unpleasant and frightening experience, some will not, especially if you have always been a ‘bit of a worrier’ about your health. In this case, I think it important that you have very open conversations with your consultant, your GP and specialist nurse about how you can access expert reassurance quickly and without having the sense of being a nuisance. Just as you have learned about your body whilst you were growing up, so you can re-learn about it in later life.
Regaining trust in yourself
I cannot tell you how many people, from all walks of life, have told me that one of the most difficult consequences of their illness and its treatment is their loss of confidence. It seems to make no difference if you are a woman or a man, old or young, have a high-powered demanding job or are retired. Cancer is a great leveller in this (as in many other) respects. Of course one of the great problems with confidence is that no-one else can give it to you: you cannot get your doctor to write a prescription or buy it in a bottle from Sainsburys. You gain confidence by doing things and developing your sense of self confidence – but how do you start when you are not confident enough? It’s very easy to get trapped in a self-defeating and immobilising loop from which there seems to be no escape. Exactly why this should happen is not entirely clear. Part of it is probably due to the sense of uncontrollability and the experience of powerlessness that cancer and its treatment engenders. Another factor that will undoubtedly contribute is the sense that the world is not a safe place any more – that you are vulnerable and at risk is brought home to you with a terrible certainty. This can manifest itself in a number of ways, but one that seems very potent concerns holidays. Many people have the idea that what would be really nice at the end of treatment is a real holiday. You or your relatives may plan to have a break very soon after treatment ends. But when it comes to it, when you have finished, perhaps the prospect doesn’t seem so attractive after all. For many people, the period immediately after treatment is marked by real feelings of vulnerability and of not wanting to stray too far from home or from the easy reach of medical and nursing care. Apart from the tiredness and fatigue, the feeling of not being entirely safe is powerful – powerful enough to spoil a holiday or break. There is also the sense that you cannot afford to look too far into the future, that planning too far ahead brings its own worries and fears. Your time horizon has been understandably limited to the next treatment, the next clinic appointment. You may have been living one day at a time. To switch suddenly to planning six months ahead seems to be a task too much. I must say that I regard the point at which someone can look forward to and plan a holiday is key sign of recovery. It doesn’t always happen quickly, and often not as quickly as people might like, but happen it does. One of the things that I will advise people to do is to plan for short trips away –
perhaps a couple of hours – to places they know and with which they are familiar. Once they can do that without too much anxiety, then perhaps a few trips for a bit longer – but not staying away from home overnight just yet. When that is done to your satisfaction, you can plan to spend one night away – and not too far away – and so on, building up gradually, one a step at a time. And that model is the key to many aspects of the rehabilitation programme that will rebuild both physical and emotional strength – one step at a time. It is much better to set yourself an easy target which you know you can achieve and end up saying to yourself – ‘That was easy, I could have done more of that’ rather than going too far too fast and feeling that you have failed. Breaking down all the tasks of living into easily manageable chunks – a step at a time – is a well tried and tested route to success. In our enthusiasm we often forget just how complex and difficult this life business is, and it’s only when you have to get back on the roundabout that you realise this. Sometimes I think that living is like competing in an Olympic event – but because we take it so much for granted we forget how demanding and tiring it can be, even at an ordinary, everyday level. Let’s take this analogy further and pretend that we are all Olympic sprinters – a rather far- fetched concept in my case, I should add – who have had a serious injury. We would not consider getting back to running the 100 metres until we had fully recovered. We would put ourselves on a gentle retraining programme, beginning with gentle walks rather than sprints. Getting back to living life should be done in the same way. A gentle build-up to the main event.
Of course one of the other factors contributing to lack of confidence is the uncertainty that living with cancer brings.
Living with uncertainty
This is one of the most difficult aspects of living with the aftermath of cancer. You will note that I have deliberately avoided using the phrase ‘coming to terms with’ uncertainty, because the reality is that this is something to be lived with and managed, not ‘come to terms with’. For those of us not living with this threat, this Sword of Damocles, truly understanding what it feels like is almost impossible. The nearest that I can get to it is to think about that phrase so often used lightly and as banter – ‘ See you tomorrow unless I get run over by a bus.’ The difference between those living with the threat of cancer returning and those free from it is that you have seen the bus coming and don’t know whether it will stop in time. Until you can be given a 100% cast-iron, gold-plated, rock solid guarantee that your cancer is completely gone, never to return, then you will have that nagging worry gnawing away at you. Again, immediately after treatment finishes, these fears may be at their worst, compounded by the lack of trust in your body and the lack of confidence that you may be feeling. It makes sense that you would feel that way and the reality and power of your feelings need to be acknowledged by all around you, both lay and professional. As time goes on, you may well find that the terrors inspired by the uncertainty reduce and are sent to the back of your mind rather than residing in its forefront. However, it may not take much to restore them – clinic visits, milestones
and anniversaries, high profile celebrities with cancer – can all serve as potent reminders of what you have been through and may bring everything flooding back with a vengeance. It would surprising if this were not the case. Your experiences cannot be expunged or erased from your memory banks – they can be made less accessible, less easily revisited, but there they will be. It would be impossible to simply ‘Put all that behind you and forget about it’ as some of you may have been exhorted to do. If only it were as easy as that. What is often helpful, to balance your understandable pessimistic and frightening thoughts, is to remind yourself of any helpful comments that your doctors and nurses have made. These are constructive alternatives that are not about naively ‘looking on the bright side’ but are real counters to equally real fears. This brings me on to the next task.
Dealing with the world
You won’t need me to tell you just how helpful a kindly word or supportive act can be. Likewise, you will need no reminders as how hurtful and insensitive can be other words and comments. I have already quoted one phrase which I would class as not only impossible but unhelpful and insensitive to boot – trying to ‘forget all about it and put it all behind you’. This, of course, is often just what the person saying it to you wants to do and it can make for significant difficulties in communication if you want to talk about your worries whilst they want to act as if nothing has happened. Although it is important to acknowledge other people’s fears and anxieties which often provoke overly optimistic or excessively reassuring statements, that doesn’t make them any easier to bear or tolerate. It is quite probable that you will already have developed a mask that you put on in some situations in order to hide some of your real feelings. Most people need to defend themselves against the unwittingly hurtful or the crudely insensitive remark. Many of you will have learned to smile sweetly as someone says brightly to you ‘My, you look really well’ when you actually feel terrible. There will be times you will need to keep this defence going because people will still say unhelpful things. Most people think that cancer is like other illnesses – once treatment is completed, the disease is cured and then you are ‘better’. As you know only too well, the situation with cancer is infinitely more complex than this simplistic analysis. As I said to you last time, you have a right to privacy (so you don’t have to tell people everything) and you have a right to tell people what is helpful and what is hurtful. This can be a very difficult task with some people who will take offence very easily, but for your own protection I think that it’s worth it – because, in the words of the advert, you are worth it.
Regaining mastery and control
This is the final task which builds on all those tasks that I have outlined before. It is the alternative to getting back to normal, a place which I said could not be rediscovered. You are in a new and sometimes frightening place where the old certainties and structures are gone and where you are having to look at the world afresh. This doesn’t mean that you have to change everything, it may mean that you change nothing. One way of thinking about this is to use yet another analogy. Most of us have a sort of life plan, more or less worked out. For some people this is a highly detailed route identifying what we will be doing and by when. For others of us it is a rather vagueamble with the odd aspiration sketched in. But once you meet a life threat, somehow the map becomes less clear, sometimes even a blank. This is a terrifying experience – where do you go from here when you can’t see the future? For some people this is a chance to review and reshape their life. The realisation that life is too short gives an opportunity to decide what you want your life to be about. And there is nothing stopping you saying that you want it to be about what it was about before or it can be about wanting to stop doing what you did and become the world bungee-jumping champion. Everyone will find their own route and their own path and it is for people like me to provide support and help during that process.
To summarise thus far, what I have tried to do is suggest that the end of treatment is the beginning of something else – a rebuilding process that needs to be managed and directed. Paradoxically, in psychological terms, this may be the most challenging and difficult time of all. It is a time of immense psychological vulnerability when people may feel that they have gone to pieces and simply cannot cope any more. So a word here about coping – a term as misused and burdensome as any. During treatment you deal with life as best you can because you have to. You may not be comfortable or find it easy, but manage you do. During this time, there is often a good deal of support – both formal and informal – available. You are also dealing with very obvious and tangible stresses. Then, all of a sudden, you are on your own with just as many threats but these threats are much less obvious and immediate. And very commonly, people find that when they can relax their guard a bit, let go of the reins, that’s when they feel they can’t cope, that they are going mad, not managing things. All this at a time when they – apparently – should be able to cope better because the stresses are less. I have already argued that, in fact, the stresses are no less, but different. And because you may be exhausted and washed-out, your ability to mobilise yet more energy is compromised. And what makes it worse is that you may be allowing yourself to think more deeply about some of the things that you have been pushing to the back of your mind – particularly about the future and about trying to make some sense of what has happened to you. So there is often a sense of turmoil, a lack of coherence in your understanding of yourself and the world. In my view, this is the point at which the need for some sort of support and space in which to talk through some of these issues is at its peak. You may need some time to sit down with someone – it doesn’t have to be someone like me although it can be – someone you trust – to reflect of what you have been through and to begin to put it in its rightful place in your personal life history.
I have not spoken much about mood yet and how this is linked up with all the other factors. There is, as you might imagine, a complex relationship between mood and all the issues that I have referred to. If you are feeling low you won’t find it easy to do things, your self-confidence will be low and your level of self-criticism high. If you are unable to do things this in turn will make you low, so you can easily get trapped
in a downward spiralling vicious circle. But there are two sets of feelings that commonly arise at the time of treatment finishing which we need to talk about. The first of these is a sense of abandonment. This makes sense. After all, for many weeks – if not months – you will have been cared for by a large number of people, all of whom have your welfare and well-being at heart. You may have met other patients and relatives with whom you have been able to swap stories and get powerful support from someone who really understands. There has always been someone there to check out that little niggling pain or troublesome symptom. There has been a routine, a structure for you to trust in. Then all of a sudden, it goes. One of my patients described it like this:
‘I got the impression of being balanced on a plank somewhere high up and with nothing to grab hold of. I felt as if I were about to fall off into some abyss.’
Such feelings of aloneness and abandonment are not in any way a criticism of the people who have been caring for you. It is simply a reflection of the fact that they now have to focus on those who are starting out on the process that you have completed. The second set of feelings that some people experience is a sense of disappointment that they don’t feel more joy and happiness at the end of treatment, but rather a sense of let down, anticlimax almost. This can be in marked contrast to what they might have expected. How is it that expected happiness does not arise? There are a number of plausible explanations. One of these is that it hasn’t actually finished as you may still be experiencing the effects of treatment even though its delivery is complete. You may also be still visiting clinic for check-ups. And I have already referred to the uncertainty and sense of threat that may continue well beyond the actual end of treatment. There is also the fact that you may be completely de-energised – plain exhausted – which does not leave much spare capacity for unrestrained ecstasy. In addition, you will have been looking forward to the absence of something unpleasant rather than the eager anticipation of the arrival of something pleasant. So I am not surprised at patient’s surprise at their lack of elation as treatment finishes.
It isn’t all doom and gloom and there will be times when you wake up feeling better than you did the day before and this slow process will gradually change until one day you wake up feeling so well that you realise just how awful it has been. Remember that for months you may have been having to live one day at a time under the most difficult and challenging circumstances. You may well have been unable to enjoy those things you usually like – your sense of taste and smell may have been affected, your desire for food undermined by nausea, your ability to go out limited by your lack of energy. But now you are freed up from the routine of treatment, from the more immediate and restrictive side-effects of that treatment you can begin to move away into a different space. Again, I would emphasis the principle of one step at a time. It is important to build up gradually and by maximising your chances of success. Small, easily achievable targets and goals will be the building bricks of your success.
In closing, I want to try and bring some of these strands and themes together in a coherent framework. What I have tried to do is give a sense that the end of treatment can be as challenging a time as any that you experience. It is made more difficult by the profound physical and emotional assaults to which you have been subjected. And it is the time when the obvious sources of support are unavailable. I have argued that there is every reason for feeling frightened and out of control at this time. But what I have also tried to do is give a sense in which you can manage this process in a way that may avoid some of the pitfalls. Regaining and rebuilding your strength – both physical and emotional -is a task that I cannot emphasise enough. That is your foundation. And taking the time to reflect, either with someone or on your own, about where you want to go from here, can begin to give you the sense of mastery and control that you may have been denied during the treatment itself. One part of this is the process of putting the experience of cancer in its right place in your life. For months, it has dominated, been in control. Now is the time to begin the long, slow process of putting in it right box in your life – not forgetting about it, not denying its importance or power, not pretending it didn’t happen. It has to be incorporated into your own life pattern and experience in such a way as to not interfere and interrupt any more than it has to. You accommodate and assimilate it into your self, not come to terms with it.
The reflective process may face you with choices about where to go from here. The exact path you choose (or the one that you have already chosen) is entirely a matter of personal choice and circumstance. Some of you will become stalwarts in the voluntary sector, helping others by running and managing support groups and becoming activists in cancer care and cancer politics – others will want to leave that part of their lives in a separate compartment and distance themselves for that experience. There may be constraints of what you can and cannot do, and that has to be built in. Running the London Marathon may not be everybody’s dream and it may even be a physical impossibility. But there are other aspirations and hopes that you will have fostered during your life. This may the time to review those and make some choices – some may remain dreams, some will be less important than before, some may take on a greater value, some will become a reality. They are yours and yours for the making.
Dr Peter Harvey
Looking back on the year… A few things I might have missed and didn’t, a few snaps of the minutae of my life
Watching the Grandchildren Growing up, Dawn’s elder turning 13, signing for Everton, the younger making friends, Annemarie’s two flying over a cornfield, the eldest grandson releasing a rap (none of which I understood!)
Working with the bees, Catching a swarm, Spring Dandelion honey, spinning, ice cream at Conwy Honey Fair, plain g this tattoo, eating a gift of Sidr honey from Israel sourced from the biblical Lote Tree, or the ‘Tree of Life’
A few tripsin the camper, a show or two, a few beers, a chat with a gull, a few rainbows, a Christmas and another Birthday
We had trips to Berlin to see my daughter planned; one on my own in the summer and one together nearer Christmas. We caught Covid and postponed but got there in the end
When she and her partner visited us they discovered Oysters…..Oh the expense!
Then at the beginning of December, a disaster. My fit, cycling, running, ex fell runner husband, Stan, had a coronary. A race in record time to Bronglais hospital in Aberystwyth had him diagnosed and stabilised then transferred to the Cardiac Unit at Morriston. We can’t thank the staff there enough, in the middle of NHS upheaval, for the care and attention he got. They let him go fairly undamaged three days later with a stent and a lifetime of pills.
We’ve seen ups and downs, a good few sunrises and sunsets and life is good again.
Perhaps I could call myself a treatment survivor and a thriver? Maybe to flourish vigorously in life like a flower planted in the right place?
When my oncologist first talked to me about my diagnosis and we discussed a treatment plan he told me that the cancer would take a year out of my life……and he was right.
“What can I expect” is a common question from patients newly diagnosed and one that we on the Macmillan community spend a lot of time answering. We are all different. Some people sail through relatively unscathed yet others find their soul at death’s door. Yet there is a common denominator.
I found this webinar-to-come from The Head and Neck Cancer Alliance in The States and I wanted to put it up here to give folk a chance to register and have look. It’s free……. but the bad news is you have to get up at 8.am to view.
They also have a YouTube channel where their webinars appear
I missed my three year anniversary in January mired in anxiety about more cancer. The fear can strike us any time. I spent a miserable Christmas worrying about increasing reflux that wouldn’t respond to treatment. PPIs, drastic diet change, sleeping upright and surfing the net for quack remedies. With my GP reluctant to commit himself to a fast track referral, I referred myself for a gastroscopy which was an interesting way to spend a few minutes of my life. I am now the proud owner of a 2cm sliding hiatal hernia which is a million times better than the hysterically imagined oesophageal cancer. God, can the mind play some awful tricks on the body!
Talking of quack remedies alternative therapies, I have embraced a few and there is scientific evidence for them…..more later. I am weaning myself off the PPIs I was prescribed at the start of treatment. A heck of a lot of us suffer reflux as some sort of gift from Radiotherapy. I took the drugs without question, a good “pill for every ill” sort of girl that I am. BUT do we really need them? Aren’t we supposed to have stomach acid? So I did some research which led me to these two.
Aloe vera has been shown to protect the gastric lining and Melatonin to increase oesophageal mucous so I take the disgusting Aloe in the morning and a couple of yummy gummies before bedtime. It helps me sleep too which is a bonus. Aloe is widely available most likely places, melatonin is on prescription only in the uk but you can get it from The States. I can say that after a few weeks on these I am a new woman. I feel I can throw the PPIs out of the window on the next sunny day.
I’m also trying one of these which arrived yesterday
This gizmo is called an IQoro, invented by the Swedes. I stumbled across it researching reflux quack remedies alternative therapies. IQoro is a neuromuscular training device that utilises the body’s own natural systems to strengthen the muscles from the mouth, upper airways, oesophagus, down to the stomach. It’s been reviewed by NICE where it seems that it might help but is too expensive to recommend…..sound familiar? I asked my gastroenterologist about it and he looked at me as if I was mad….well his eyes did, the rest of his face was masked. This possibly means that he’s never heard of it, it’s a quack remedy or it will work. Take your pick.
Strange title. I should have posted this three weeks ago
I’ve written previously of my cancer buddy Hazel. She is RadioactiveRaz and has a blog https://radioactiveraz.wordpress.com We have messaged for two and a half years and together we created and still run a WhatsApp group to help and support folk going through treatment. Some people come for a few weeks, some stay to help and some leave to get on with their lives. One lady labelled us “legends” which was hilarious…..because we are not but it has jokingly stuck.
Three weeks ago we finally got to meet up in New Quay on the Cardiganshire coast in the sunshine to share gossip, an ice cream and a hug. So I simply wanted to raise a glass to my fellow legend
At my last hospital appointment I dropped off some honey for the two consultants who look after me. I said I’d update the blog with a little info so especially for Mr Kittur here is a glimpse at where your honey comes from. If there are any beekeepers reading this it’s just a simple glimpse into my bees.
Some shots from the hive. Top we have one of our queens. She has a white mark on her….wearing off…. to help us spot her quickly amongst the thousands of daughters and sons in the colony. She lays eggs in the honeycomb which hatch into larvae that look like little white commas and when these are ready to pupate the bees seal the cells with a mixture of wax and propolis and that white grub changes into a bee which emerges 12/13 days later into the dark warm hive where she will live for three weeks before she flies to collect pollen and nectar.
This is the Apiary in July. The hives producing honey are at the back and the five in the foreground have new queens. As you can tell…I’m pretty disorganised and not really into coordinated colours here. There is a real mish mash of wood and polystyrene and different colours. A kaleidoscope of boxes.
This year we have new genes in the Apiary. Exciting times await
This is one of our better colonies. There is potentially 200lb of honey stacked up next to me. Time will tell when we take it off the hive at the end of August. Most of it will be from Bramble, Rosebay Willow Herb and Clover.
Honey varies in colour and taste depending on where the bees forage. In spring Hawthorn nectar produces an amber coloured, toffee flavoured honey and dandelion a paler one that crystallises quickly, smells of sweaty socks but tastes wonderful….a sort of Durian of the honey world. In the summer clover gives you a perfumed pale honey and Rosebay a pale straw coloured one.
Last but not least, watch two new queens emerging one after the other. If you look closely you’ll see another running around. They are hungry. The first thing they do is dive into a cell to feed.
They are fairly new and need more members so take a look….but I digress
My friend sent me this picture of the cake a young lady’s boyfriend gave her for her six months after treatment for tongue cancer
Today I had ask appointment with my surgeon Mr Kittur. I was hoping I’d get away with a phone consult but no….the booking office rang me and arranged a F2F. I have got so used to long distance monitoring that when a physical event presents itself it brings back all the anxiety of the past. I check myself routinely. I know what to look for but……….. HOORAY ……..he has a good feel of lymph nodes and a look in my mouth and I’m free for another six months. Recurrence is more common in the first year, the longer I remain in remission the better my chances of living. I’ll take that.
The bees said thank you too and left Mr Kittur and Dr Banner, the oncologist looking after me a couple of jars of honey each
I wasn’t going to indulge in posting interim reports on me but you know what…..Wales is basking in a really well earned heatwave after a miserable Spring. The sun was shining. I was on my own in the car. I’d just got an All Clear, at two and a half years. So I pulled off the M4 onto the Welsh country lanes I know so well, wound the windows down, put my favourite Steely Dan album on full blast
Research Question: Does PETCT-guided, patient-initiated follow-up result in similar overall survival compared to current post-treatment routine surveillance for head and neck cancer (HNC) patients? International guidelines recommend regular routine follow-up, aiming to detect recurrences early and enable successful re-treatment. This regimen is effective at detecting recurrences. However, because detection rates are low in asymptomatic patients attending routine consultations, this routine surveillance regimen is inefficient, resource-intensive and increasingly unsustainable. Patients also report that follow-up schedules are too frequent, and may exacerbate fear of recurrence. In contrast, detection rates increase dramatically when patients initiate earlier review because of developing new symptoms.
Aim and Objectives: With patients and clinicians, develop a patient-centred, evidenced-based and theoretically-informed complex intervention and information and support resource for PETCT-guided, patient-initiated follow-up for HNC.
I’m so proud to be a tiny small part of this trial and I’ve been involved in Zoom meetings to help draw up an App as part of this resource; an App to enable patients to self monitor and keep in touch with their hospital team. There are lots of other extras like links to support groups and living well tips.
I thought I might sneak in a few snaps of what this might look like on your phone.
I think this is very exciting and might well suit quite a few patients. Much as I like seeing my wonderful Oncologist and Surgeon (though I must admit both have been either a distant voice at the other end of the phone or hidden by an alarming amount of PPE paraphernalia for the last year) I guess seeing them less frequently wouldn’t impact much. My Oncologist has done his job…..I sorely hope my surgeon has….. so I feel my survival is now down to luck.
Ive left this on Twitter …….“Just been in a PetNeck2 Zoom call, So proud to be helping finesse an app for Head and Neck Cancer follow up. Do I want an App replacing my oncologist? Human intelligence or AI? Daddy or Chips? Seriously; done properly it makes sense and I would be happy with it. They have done a brilliant job with it.”