The Jack in the Box in the Corner

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Please note, this post comes with a **health warning** – contains bad news.

I have to credit my oncologist, the lovely Dr Snee, with the title; “The Jack in the Box in the Corner”.

During a consultation over the summer, when I was enthusiastically feeling very well, and explaining how I was just going to get on with my life as though the cancer had gone, (oh how very naive…) he very pragmatically said, “But it will still be waiting there in the corner, like a Jack in the Box, ready to pop up at any time”. Indeed, all of us with cancer, and their loved ones, know that this is true. We all carry around our Jack in the Boxes hoping that they won’t pop up, but with mesothelioma, predictably they always do.

I thought that I would have a little bit longer before mine popped up again, as I was doing So Well and had responded so well to treatment. But no, it wasn’t to be. It looks like my mesothelioma is just as enthusiastic and energetic as the real me. It wasn’t prepared to lie down on the sofa for long.

When I posted “Back on My Bike”, I alluded to the fact that I had daren’t “go public” with my good news. I realise now, this was partly because I didn’t want to face the inevitability of having to write this post.

I had suspected that things weren’t right for a few weeks and tried to tell myself it was a cold etc etc. Interestingly, all the bad pain I wrote about in “Little Miss P” has disappeared (I think it was muscular after all..), only to be replaced by intermittent Mr Meso pain in all the classic sites… The cough is back, and deteriorating, and I’ve also started with night sweats and that fuzzy lethargic feeling…. so all in all, pretty grim.

A chest xray and CT both show disease progression, ie) that the mesothelioma is growing again. It’s not as bad as it was when I was diagnosed, but it has grown fairly rapidly, given that my scan on the 1st September was almost clear.

I thought I’d be back at work soon, stepping back into the chaos and joy of a sexual health clinic, but no, I’m again working out the next steps in terms of mesothelioma treatment…

This time round I am not so overwhelmed and incapacitated by anxiety, so that at least makes it easier to think and make decisions.

 

But I am sad. Very sad.

 

And when I think about Martin and the kids, I am utterly heartbroken.

 


 

I wrote those words a few weeks ago and since then the tap of tears has turned down to a drip…

I’m still sitting in the limbo land between disease progression and treatment, but this should be sorted fairly soon. Managing to do everything…. but feeling like a stunned animal wading through treacle a lot of the time. For the clinicians out there, I think my affect is fairly blunted!!

But I will continue to pick myself up… We will continue as a family to pick ourselves up and get on, because what else can you do?

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Love, Hope and Rainbow Ninjas

IMG_3871I wrote this blog post back in May, but didn’t get round to publishing, as it was never quite finished and always quite rambling (still is….)!! It relates to experiences in February 2017. In the blog, I refer to a conference in October – well – that is where I am just now!! The Mesothelioma Patient and Carer Day, organised by Mesothelioma UK.

The reason I originally wrote this post was to say Thank You to all of you who have provided me with overwhelming love and support over the past months. That still stands. YOU have made this experience much easier, given me reasons to hope, and to live. Thank you. 🙂


February 2017

Here goes. Home after the VATs procedure and I was feeling good. Better than I had done for ages. I had got through the anaesthetic, VAT surgery and post operative chest drain… any remaining pain was quite manageable. Slight bump in the road in that I was allergic to the dressings and their removal was just like peeling off a layer of skin…. Nice!! Allergies certainly notching up… And there were more to come.

I had posted my first blog and had “come out” to the world about my diagnosis.

The response was incredible. I am still completely overawed by all the people who took the time to get in touch, write cards, send presents (such thoughtful presents too – you know me so well!!!). It makes such a huge difference to know that there are people out there rooting for you. If I (still) haven’t responded to everyone in person – please accept my apologies.

It got me thinking about Love and it’s importance in day-to-day life. I tend to be fairly liberal in giving love. In the main, this has been a totally rewarding approach to have; not something I consciously chose either. It reflects my upbringing where I was taught it’s ok to love and respect, plus I was given the skills to feel confident in doing so. This approach in the workplace has been particularly rewarding. I really believe that if we work towards love and respect across the hierarchy, acknowledging that everyone’s role is of equal importance, then we can definitely achieve more together. I digress. Having a cancer diagnosis meant that people were suddenly being so open about their love and respect for me. It was and is, a truly humbling experience. We must endeavour to do this for each other more, cancer diagnosis or not.

I challenge you to tell someone today, why you love and respect them.

The other outcome of posting the first blog was that because I used the # mesothelioma, I was “found” by Mavis Nye. I would like to call her “Mesothelioma Patient Advocate Extraordinaire”. She contacted me to say hello, to see how I was doing, and link me in to her Facebook Groups. She was in contact with me a lot over those first few weeks to offer support. And what a difference it made. Peer support was something that was lacking when I was initially diagnosed, but from Mavis’ contact the whole Mesothelioma Community opened up for me. I was suddenly able to see that I wasn’t completely alone, that there were other “young people” out there, and other women. I also found hope.

Mavis linked me in with Liz Darlison, Mesothelioma Nurse Consultant, who invited me to speak at a conference in October. Bearing in mind that this was only February, I was rather incredulous that she had faith that I would not be dead by then!!! If she believed I would be alive in October, and be well enough to speak at a conference (those of you who know me, know that this is something I particularly enjoy)…. Then I could, and would, and DO believe it too.

So, this got me thinking about hope and how very very important it is. Nowhere along the lines had I been given any real reason to hope about the future, other than a discussion that immunotherapies seemed to be coming through and were offering an amazing response in some individuals. Also, there was a recognition that I was “me”, by Mr Papagiannopoulos. (I would like to point out here that “the future” when you have been diagnosed with mesothelioma takes on a very different meaning. We are grateful for every single day, week and month that goes by. Thinking and hoping about the future does generally not mean 20 years down the line… I wish it did!!)

As we all know by now, mesothelioma is an incurable illness with devastating statistics, but I felt very strongly that I would be one of the 43% alive at one year. I was a young person, still functioning pretty much normally, well… as normally as possible, with a new diagnosis of meso. I looked into the statistics a bit further and found that as a 42y old female, I was pretty much one in a million. http://www.cancerresearchuk.org/sites/default/files/cstream-node/cases_crude_mesotheli_I14.xls Nice huh. In some data from the US, I also noted that survival is longer in young people and in women. I offered this up to my oncologist, hoping to have a chat about his thoughts on prognosis, but no. He didn’t take the bait. (Not at that point anyway – we have since discussed this in a little more detail.)

I was interested to read in the book “When Breath Becomes Air”, written by a young doctor, Paul Kalanithi, who ultimately dies of lung cancer, that he often pressed his oncologist to discuss “Kaplan Meier survival curves”. She was very reluctant to do this to begin with. Understandably, clinicians are often very guarded in discussing prognosis in cancer patients, because it can be so variable. I know this having been on the “other side” as a clinician, it can be very challenging to maintain realism, but at the same time trying to support the patient.

However! Now as a patient…. I really wanted to see hope. I wanted to be given permission to determine to be in the 43%. (As I write this 9 months later, I wonder why I needed permission – I had made the decision anyway…..!)

Around the same time a friend of mine contacted me and asked if she could send me a book called “Love, Medicine and Miracles” written by Bernie S. Siegel, a surgeon in the US who set up the first group for Exceptional Cancer Patients. In this book he writes about hope, including what interested me, the concept of “false hope”. He says “….we adopted as our motto a sentence from the Simontons book: “In the face of uncertainty there is nothing wrong with hope”. Some doctors have advised patients to stay away from me, so as not to build up “false hope”. I say that in dealing with illness, there is no such thing in a patients mind. Hope is not statistical. It is physiological! The concepts of false hope and detached concern need to be discarded from the medical vocabulary. They are destructive for both doctor and patient.

Whenever I work with medical students or other physicians, I ask them for a definition of false hope. They always hem and haw, and fail to come up with one. I make it clear to them that for most physicians, “giving false hope” simply means telling a patient that they don’t have to behave like a statistic. If nine out of ten people with a certain disease are expected to die of it, supposedly you’re spreading “false hope” unless you tell all ten they’ll probably die. Instead, I say each person could be the one who survives, because all hope is real in a patients mind.”

I completely agree with this approach, but realise that it may need to be moderated a little depending upon where a patient is on their journey. Clinicians are actually quite good at assessing when a person is near the end of their life, but what we are not always good at, is acknowledging it, accepting it and communicating it to the patient and their loved ones. Hope does need to be tempered with reality, some times.

On a personal level, I have always had a particularly high level of determination. To me, being given hope was a reason for my determination and survival instinct to kick in. Hoping, believing, that I will be a survivor at one year…. surely this will only do good?

The reason my friend was moved to send me the book mentioned above, was because I had divulged to her that I had been visualising Rainbow Lego Ninjas removing my tumours. I know this may sound completely crazy, like completely crazy, and of course there is no way I would ever consider giving up tried and tested, evidence based medicine, for visualisation, but I was interested to read about Bernie Siegel’s experience working with visualisation in cancer patients. I didn’t consciously choose to do visualisations (although I did know something about the concept), they kind of came to me.

I had been doing some basic Pilates at home, and was in a kind of “relaxed zone”, thinking about my tumours. This was after the first cycle of chemo and I already felt some improvement in lung symptoms, so was feeling positive. I guess I had an advantage, as I could visualise for real what my lung looked like, having completed anatomy dissection as a medical student.

As I was looking at my lung, and pleura, a “Lego Ninja” appeared, next to some tumours, in fact two Lego Ninjas. One was definitely the leader and she removed her blue helmet, swishing her hair in the same way as Wyldstyle does in the Lego Movie. In fact, she had a similar appearance to Wyldstyle, apart from the fact that she had a blue Ninja mask and was wearing rainbow dungarees (of course). She said “Lets Do This!!” and showed me how she was destroying the tumours. I asked her to concentrate on the mediastinal disease, as this was the part that was worrying me most at the time.

It made me giggle: I couldn’t quite believe what was happening….! However, I decided not to worry about my state of mind, but to make use of the fact that these Ninjas had appeared to me, and focus upon them. I decided to devote some time to visualisation every day…… more than anything, because it helped me to regain some sense of control.

At the beginning, I saw a lot of them, and it was quite a treat to see how imaginative they were with their power tools!!! They ranged from circular saws (yes ouch), lawn mowers, tractors, bows and arrows, speedboats, abseiling down a bit near my diaphragm using a sword and more. The removed tumours turned into rainbow glitter dust. The second ninja seemed to help with the “clean up operations” and would pull out any remaining meso cells with a degree of precision, then polish things up when all the cells had been removed. When I last looked, they had also applied a green transparent coating to the areas where the meso was, to prevent it from coming back. (More recently, the Ninjas have been sitting in deckchairs next to, or swimming in a most beautiful deep blue/green lake containing shimmering fish of every colour…) Remarkable, what can go off in your head (and therefore body) if you just sit back, relax and let your mind do the work!!!!!

Or maybe I am just crazy…. 🙂

This post is dedicated to Mavis Nye – for giving me, and hundreds of other mesowarriers & their families, hope and support. Mavis has recently set up the Mavis Nye Foundation to raise money to further support patients, mesothelioma research and the medical community. http://www.mavisnyefoundation.com/  It is possible to donate through the site too if you feel moved to 🙂

 

Little Miss P

Little Miss P photo

Pain, it seems, is a fairly expected part of the human condition, especially as we get older. But living with a chronic disease, pain can often go hand in hand with her sister –  paranoia. Paranoia that things are getting worse. These two sisters together can shake even the strongest persons resolve.

I guess I have lived with pain now for over two years. It has been variable, therefore easy to brush under the carpet and ignore. For many months I thought that the pain in my back was “musculoskeletal” and put it down to my lifestyle. It always went away (or so I thought), so was easy to ignore…. up until my diagnosis of mesothelioma. Then it was as though the light had been switched on and all these unexplained, disregarded pains made sense.

In a way, that was good, because I no longer thought I was “just getting old”, or going mad (?!) but…. the persisting presence of pain also serves as a reminder of the Big M. Pain is a complex thing.

When I first returned to Pilates, and started the first step in putting myself back together again, with the help of most awesome Claire Sparrow, I had a subtle scoliosis, meaning that my spine was bent in a “C” shape over to the right where the Meso was. The Meso was causing pain, simply by its presence, and I was recovering from VATs surgery which also had caused pain. These issues resulted in scoliosis; often the bodies protective mechanism. But scoliosis itself can worsen pain, by knocking all the muscles out of line and/or causing them to tighten. As we all know, when pain makes itself known, our brain reacts with an increased awareness, causing the pain to become more noticeable. A never-ending cycle.

Since the success of the chemotherapy, my pain had improved, in fact, settled to almost nothing…. but not completely gone. So, having seen my CT scan with virtually nothing on it, I decided that any remaining pain had to be related to things other than the mesothelioma. And I decided to do something more about it…. Sigh….. In retrospect, I was already doing something about it, but the “pre-Meso me” had started to resurface and wanted to push myself for an immediate and total solution…

If you read my last blog, you will know that last week was a Good Week and I felt fairly invincible. How on earth that is possible with a diagnosis like Meso I don’t know, but there we have it 🙂 I had many months ago decided to get on with my life, but last week I decided to ramp it up a bit. My aim was to eliminate the chronic intermittent low level pain, so I could also eliminate the reminder of my diagnosis. Oh, it sounds so beautifully simple doesn’t it.

So. I had the most amazing massage of my life. As you know, I got back on my bike. Lots. I had tinkered a bit with yoga and loved it, so I decided to make it part of my daily life. As a result, I stretched bits that hadn’t moved in years. I moved a bit of furniture around, because, well, I could do anything.

And guess what. It’s not hard is it? You’re right, the pain got worse. Quite a lot worse.

So, in skips Little Miss P.

P a r a n o i a.

Immediately, I’m back staring into the abyss that is the end of my life. Even though my rational mind is telling me that this pain is unlikely to be anything serious, and I have just overdone things, little Miss P just won’t let up. “You thought your pain wasn’t serious before, and you turned out to have mesothelioma! Hahahahaha!” She’s gleefully skipping around my mind, playing her games with me…

I know Little Miss P quite well by now. She’s all about knocking your confidence when you thought you had it back. She’s the one who always spoils the fun at the party.

But I am learning how to get her sorted. It usually involves time and patience, replaying the rational side of the story over and over again, a faithful listening ear or two (thank you), a few long walks and of course Pilates. This experience is also teaching me (again) about being gentle with myself and listening to my body. Thankfully, I have already learnt that my that inner strength will eventually reboot itself. After having been through so much over the past 10 months, I really can’t expect to suddenly be seventeen again. If you think I ever need reminding of this, please be bold and “get me telt”, I will love and respect you all the more for it!!

And Little Miss P. It’s time for you to get on yer bike.

 

Back on my Bike

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“I may have cancer, but I’m not ill.

I may have a terminal illness, but I’m not dying!”

Firstly an apology, this update is well overdue. It is a real time post and will be brief, just to fill you in on important news. I also apologise if you have been in touch and I have failed to return your call, text or message. Thank you for being in touch. The summer has been spent with my head down, pretty much switched off from social media and spending lots of time with my beautiful family, in some of my favourite places….

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 Well. Where to start. The biggest news is that I AM IN REMISSION. Yes, that’s right…. In remission from mesothelioma. I didn’t think that both words would ever go together in the same sentence, but there we go. I am one of the lucky ones. The very lucky ones. Not only am I in the lucky third of people who show improvement following chemotherapy, I have pretty much had a complete response. I literally owe my life to the wonders of medical science and the NHS, to my wonderful oncologist and the incredible, patient nurses who looked after me. Not forgetting the pharmacists who also do an amazing job – respect!

Unfortunately though, remission does not mean cure. It simply means that the cancer has “gone for a bit of a lie down”, a bit of a rest. As I am constantly reminded when reading anything to do with mesothelioma, it always comes back. The big question is when.

I’ve known about the remission for a few months, but firstly didn’t want to share with the big wide world because I daren’t actually believe it. It was only after the third appointment with my oncologist when we looked at the scan again, I began to think, “okaaaay, this is real”….. Recently I’ve felt reluctance to share because it just feels a bit weird. Don’t get me wrong, good weird, but I can’t help thinking of all the other mesowarriers who don’t have such good news. And a total mind **** to think that 6months ago I was preparing for the very real possibility of disease progression and death, whereas now, I’m looking to the future, excited about life and all the new things there are to do!!! Constant readjustment is the name of the game….. and I realise it will be for the rest of my life, for both me and my family.

So, my follow up CT scan a few weeks ago was better than the previous scan which “won’t get any better than this”(!)… I kinda knew, because it feels as though my right lung can now hold more air than the left (this is the case in “normal people” as the heart gets in the way on the left and the lung is smaller), and the mesothelioma pains have all but gone. Quite mind-bogglingly remarkable. Particularly as I’d not had any treatment for 3 months. Oh goodness, it could have been so much worse.

I have to remain plugged in to reality though. For fear of repeating myself, who knows how long this will last for…..? It could be only a few more months before things start to deteriorate, as this is the usual time frame for disease progression. But! Because I have had such a good response, it could be years. I have chosen to believe that the mesothelioma has gone and get on with as normal a life as possible. Why wallow in the worry that it will come back? Of course, deep down I know that it will, but I certainly don’t want to darken my remaining days, months, and hopefully years, thinking about it if I don’t have to. Plenty of time for that, eh.

“Normal life” is nowhere near what used to be normal though; it is viewed from a very different perspective. It is as though I have sped up towards older age and am learning the insight and contentment that older people seem to have… I also have a bit more patience…. yes, really! And, I think I have slowed down…. just a little…!

I am blessed to have such a beautiful family that I love    so      dearly     and I spend time marvelling at them everyday. I also think that for the first time, I am really happy in my own skin. I want to look after my body, heart and soul, and it brings me joy to know that I can do this. Since I have been unwell, I’ve been mostly walking, and using the car for longer trips. But this was starting to annoy me, as I used to cycle everywhere! So, I just decided, that was it. No more car journeys. This week I have been back on my bike…. And so far I have done it. And what is more, I’m really enjoying it. Even the hills. In fact, especially the hills lol… Down with cars, up with bikes!!!

It may sound odd, but I am grateful for the gift of terminal illness and the new eyes it has given me.

Every day I remember though, that I have been given an even bigger gift; that of a little bit more life. And for that I am truly grateful.

 

 

Who am I anyway? Part 1: The Bus Pass

IMG_3741Since the VATS biopsy result confirmed pleural mesothelioma (February 2017) we had been getting increasing amounts of post. That day, another official looking brown envelope arrived. I decided to open that one first. Inside was a bus pass. A free bus pass bearing my photo. Quite an old photo; one taken when I still had the red stripe in my hair.

I didn’t know whether to laugh or cry. I decided to laugh… The date of expiry was Feb 2020. At least someone thought I would live that long!!! I recalled friends and family reaching retirement age; they also seemed to find issue of The Bus Pass quite a “momentous occasion”. A Rite of Passage. Now I could join their ranks, but I was only 42… and mine was a “Disabled” pass. Highly unlikely I’ll ever be granted the “Senior” version.

My bus pass could join the list of other things that come your way when you have a #MesotheliomaCard. If we had a mantelpiece, I could display the pass there, along with with my Blue Disability Badge and the letters concerning benefits I was entitled to… When you have mesothelioma, you have a legal entitlement to certain benefits…. and often they are fast-tracked because of the dire predicament we find ourselves in. But oh the guilt!!! Being someone with a huge work ethic, and with a stoic Yorkshire personality, I found all this extremely difficult to handle, particularly as I thought I was still well at this point. But the possibility was, that my health would deteriorate, and items such as the disability badge would prove invaluable fairly quickly. The only statistic that sticks in my head is that of the 43%. Only 43% of people with Meso survive a year. It still takes my breath away to write that. Not a good thing when you have mesothelioma!

I didn’t even remember that the bus pass had been requested on my behalf, but following confirmation of my diagnosis, Chris, my lovely Clinical Nurse Specialist with support from a Macmillan Welfare Officer, had swooped into action. Amongst other things, they had arranged the bus pass and the blue badge. Amazing. I am very grateful that this had been done on my behalf, because yes, I had bigger things to worry about, one of them being my pride….. and probably would have never got round to it.

But however grateful I am, I could not get away from the fact that these things all eroded away my sense of self. And their appearance made me feel that everyone thought I was going to die. A DS1500 form was signed by Chris. A usual thing to do when someone has a terminal illness. I nodded agreement throughout this consultation and passively explained to Martin, my husband, what it meant.

“They sign it when you are expected to have 6 months or less left to live”. “Just another  thing to sort out.” I say pragmatically. The real me, however, was saying “WTF This is UTTERLY RIDICULOUS”. Of course I am NOT going to be dead in 6 months…. But then maybe I am. Who knows. That’s the nature of this game.

Unsurprisingly, as a result of this barrage of developments, my emotions were “highly variable”, shall we say….. Sometimes I felt “Yeah, I can do it!” such as when thinking about recovery from surgery, and the impending chemotherapy, but there were these new feelings creeping in. Feelings of worry, lack of confidence in myself, and stress about the numerous things needed to be sorted out, to make the end of my life easier for others to bear. There were constant reminders that I had just been given a diagnosis of an incurable disease, and I didn’t know how to deal with that. I had also noticed that I was increasingly short of breath and fatigued. I was short of breath when walking on the flat. I was short of breath reading my kids their bedtime story. Not that I would ever admit that, EVER. The pain below my right shoulder blade was there constantly and really quite prominent in the evenings – I could never seem to get comfortable. It was getting easier to start believing that I was going to die, and I was scared. This was going to be the biggest challenge of my life.

As you probably know by now, I am a medical doctor, a Consultant in Sexual Health and HIV, and work at a sexual health clinic in Central London, Mortimer Market (albeit not since my diagnosis). I balanced this (perhaps not very well) with being a mum to two beautiful, insightful and humorous boys, and wife to my “long suffering”, handsome husband, Martin. I love my family. I love my job.

I’ve always been someone with a strong sense of self, high self-esteem and self-belief. Perhaps, fairly egotistical (in a nice way I’d like to think…). From being quite young I had often felt as though I didn’t quite fit in, probably as a result of moving house a lot as a child, and my parents not being local to Yorkshire. As a result, I had grown quite a thick skin and eventually felt able to be proud to be a bit different. Outwardly, I am quite a confident person and not afraid to speak up. I have a fairly, or should I even say brutally, stubborn determination at times, meaning that I have managed to achieve a lot in life so far.

When I was told of my diagnosis of mesothelioma, I was hit by this overwhelming feeling of not knowing who I was anymore. It was gut-wrenching. All the things I had taken for granted; my strength, my health, my fitness, could no longer be relied upon. How would I be able to function as a mum? How could I continue to support my children’s physical and emotional needs when my health was failing, and I was an emotional wreck? Could I ever go back to work? Would this be in the same capacity?

At times I really felt that I was no longer the person I used to be. The easy familiarity with who I was had gone, to be replaced by an indecisive, severely anxious person, an observer rather than an innovator.  It was going to be a momentous effort to gather up the fragments of my remaining self, and rebuild.

 

In case you were wondering, I use the bus pass, and I plan to out-live it’s date of expiry.

The VATS

FullSizeRenderIt was a Monday morning 7am, February. I think that my mum was here to look after the kids and get them off to school, but my memory is hazy!!

What I do remember is arriving at the Surgical Ward, which wasn’t yet open. As a result there were around 30 patients, most with companions, queuing outside the door. Everyone with their suitcases… It reminded me of an airport, except no one was drinking beer…. And it was quiet!!! No cackling hen parties to disturb us…. A really odd feeling of waiting….. subdued tones….. anxious about what was to happen next….

Eventually a nurse came and opened the door, but the wait still wasn’t over. She called the names of around half of us…….. and then asked those people to wait outside the ward! I was one of the lucky ones, allowed into the ward, meaning it was more likely that our surgery would proceed as planned. Hallelujah!!!!

Martin and I sat down next to my allocated trolley, upon which lay a hospital gown, TED stockings, and very glamorous paper pants. I asked for a smaller pair as just looking at them, I realised that there was quite a high chance of them falling off!!! Unusually for me, I suddenly didn’t fancy being completely on show.

 Obs done.

Blood pressure a bit high.

Told this was “forgiven” as everyone usually nervous prior to surgery…

And then waiting.

The realisation that patient confidentiality really is a misnomer in an open ward. It is possible to hear everything that is said to the patient in the next bed space….

 Oh! A visit from the anaesthetist.

I was encouraged as he wasn’t just a “young thing”. Why on earth should that matter?! How weird it is to be a patient. How your perspective on things change.

 And a bit more waiting…

The Porter arrives!!

I hadn’t actually got changed into my glam hospital gear as no one had indicated what time the surgery would happen. Oops!!! A little embarrassing they had to wait for me to get changed….. Next time I will know better..

I was wheeled through the hospital on a trolley. Again, a very very weird turn of events. I knew the hospital well, having worked there as a junior doctor. The incongruity of now travelling flat on my back on a trolley through the corridors, as opposed to walking fast  with my ID badge swinging, was really stark. In my “old life” I was always in a rush. Again, awareness of another perspective, this time literally!

And then we were there.

I said goodbye to Martin at the door to the theatre. Very surprisingly, I didn’t feel that nervous at this point. Quite how, I have no idea!!!! I think perhaps by this stage, I was fairly resigned to my fate.

Lots of checking of my ID and allergies. More checking. Drawing an arrow on the right side of my chest where the mesothelioma was….

 And then very quickly into the anaesthetic room.

Eeek!!! This was going a bit too quickly for me!!! But, I was cheered to see the anaesthetist again, and be spoken to kindly by the operating department practitioner. Then I got told off for trying to assist with cannula insertion by rubbing my hand… Just doing my job lol….

 Anaesthetist: “I’m just about to give you the Fentanyl*. I’ll give you a few moments to enjoy it before you go off to sleep”.

The room then turned into something out of a Cubism painting. Straight lines turned jagged as the Fentanyl began to take effect.

Me: “I’m not enjoying this AT ALL!!”

Then nothingness.

 

*Fentanyl is a painkiller similar to morphine


 

And in the blink of an eye, I was waking up! I felt intense pleasure, as though waking up from a really lovely dream. I had no pain. I had no nausea. I felt happy. Perhaps I did like Fentanyl after all….

And then Massive Relief washed over me.

Not only was I alive (!), but the realisation of why I had been so terrified of surgery, and having this procedure, hit me. My only experience of operating theatres as an adult had been observing or assisting in surgical procedures. My subconscious brain seemed to have assumed that I would be observing my own VATS. It thought that I would have been witnessing the surgery and therefore seeing the tumours all over my lung. Visualising the mesothelioma, the cancer. But I had woken up from surgery without having any recollection of events. I had simply been the patient. Not the assistant or observer. I was enormously relieved and thankful.

My mood lifted immensely after the VATS; I felt a sense of achievement. I had a beautiful room in the Bexley Wing (so beautiful that I actually shed a tear on arrival) and there were no post-operative complications. For a change, I was able to be a Good Patient.

I gingerly got up and about, negotiating my chest drain.

I ate my food (lots of it).

I went for a pee myself (ok, with a bit of help the first time).

I had no pain.

Then the local anaesthetic wore off. It was around midnight… OKAAAY!!! So the marvels of modern medicine had duped me into thinking that this surgery thing was a doddle… But, I got to grips with my PCA (patient controlled analgesia) and pain settled quickly.

The nurses were fabulous.

The ward Housekeepers were even more fabulous, keeping me topped up with tea, biscuits and humour.

I was on course for chest drain removal and home!!! In the end I was allowed home early – whoopee!!!! Ready for some Rest and Recuperation, and the next stage in the journey.

Today it is my Birthday

IMG_9069-1Ok, so this is a real time post…. It is actually my birthday today. I am 43 years old.

In January of this year I had no idea whether I would still be alive, so this is the first momentous personal milestone for me to reach since my diagnosis of mesothelioma. And it feels AMAZING!

I have a standing joke with my husband that the sun always shines on my birthday…. And it pretty much does 🙂 My Dad when he was alive, also used to remind me that as well as the sun, there was a Salvation Army Band playing outside the window of the hospital during my arrival…. thought I’d put that down for posterity too lol….

So then, how sweet to awake early, with the sun coming through the curtains. And then realise that I had made it to 43!!! I suddenly felt excited!!! I no longer have to care about getting old, wrinkly, chubby, skinny, whatever. The importance is to be alive for a few more precious hours, days, months, and if I dare to dream…. years… The band is still playing…

Because today, I have no symptoms remaining from the mesothelioma. Now I am symptom free, I can look back and see that I had been unwell for a while… Over a year I think…. I had fatigue and hadn’t noticed the shortness of breath, as it crept up so slowly. But now, what joy to be able to take a really deep breath in and fill my right lung with air!! Today I cannot feel the niggling chest pain, just below my right shoulder blade, which had reached quite a crescendo before I started chemotherapy. So I am going to enjoy these moments, and ignore as much as possible, the few ill effects from the 5th cycle of chemo I had 2 days ago.

I know that I am one of the lucky ones, the lucky ones who actually respond to chemotherapy. and for that I am immensely grateful. I have been given the gift of life for a little while longer. Who knows how long that will be, but today, I am going to enjoy it.

I have been into the garden already (at 630 am!), walked amongst the slugs and snails on the dewy grass in my bare feet, and looked at the vegetable plants growing from the seeds I have planted. I know that it is set to rain later, and it looks like storms (!) but we will deal with them when they come.

So to finish, I want to say a MASSIVE THANK YOU to OUR NHS and to all the people who have cared for me and continue to do so.

And thank you to all of you, for your ongoing love and support.

Here’s to making it to 44!! With bells on.

Part 6 – Significant Denial, Significant Others

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Just a reminder that this blog post relates to February 2017. I’ve decided that the way I am writing is not great for keeping people updated – apologies for that. I plan to tweet more updates as an experiment and will reassess (whether I can keep it up (!)). I’m @magsportman on Twitter.

Lets jump back to the end of Part 4 of my blog. I’d been given my diagnosis of the Big M. I need to fill you in on a bit of the story…. Writing about the importance of hope will have to wait (again lol).

The next thing to happen was that I was to see a surgeon prior to a surgical VATS procedure, biopsy and talc pleurodesis. http://www.uhs.nhs.uk/Media/Controlleddocuments/Patientinformation/Heartandlungs/VATSlungbiopsy-patientinformation.pdf

Unfortunately, my medical brain had gone into overdrive and I wasn’t 100% sure about this! Plus there was a wait of 11 days to see the surgeon (ok, so in reality, a completely insignificant wait, I know..), then I anticipated a further time to wait for the actual surgical procedure… More time for my brain to question what was going on!!! Secretly, I was glad of the wait too, because this meant more time I could pretend it wasn’t actually happening….

My lovely friend Dr Laura Waters, who has been so very supportive in many ways, (sending me oodles of my favourite Yorkshire Gold tea, Lego for the boys, texting me almost every morning, and of course setting up the Just Giving page…), swooped into action and helped me to arrange an appointment with a surgeon for a second opinion. She also accompanied me to the appointment – I was, and still am, incredibly grateful. Thank you Laura 🙂

The appointment went like this. “I’m so sorry to hear about your diagnosis. Absolutely devastating for you.”

“I realise that you are here to discuss surgery, well, I need to remind you that all surgical procedures for mesothelioma are purely palliative”. Both myself and Laura I think needed a moment to gather ourselves. I was probably sitting there with a bit of an open mouth… The surgeon spoke the truth, but it is quite difficult to be faced with this stark reality so early on in a consultation, when I guess that we had gone to find a bit of hope.

I have thought about this approach a lot, and wonder whether the surgeon was, in addition, expressing his own devastation at seeing yet another person, another colleague, affected by this preventable disease. I also recognise that my reaction was mainly due to me still being in denial of what was happening. (Internally I was horrified – I did not want to be reminded that my diagnosis was devastating).  Everything was still so new, and I hadn’t got used to how I would react to sympathy from others… But! I still think that there are other ways of wording it…

There was then a discussion about various surgical options available, from symptom control only, to more radical approaches and the benefits and side effects of each. Eventually, I was advised that a pleurectomy may be of benefit and that I didn’t necessarily need a VATs procedure prior to proceeding with this. The surgeon was kind, well meaning, and wanted to help. He was very honest with us and explained how his opinions, and therefore approach and advice to us, had been coloured by his experiences over the years. I remain thankful for his opinion, which completely tallied with the way that I was thinking at the time.

Despite this, I kind of left feeling like I’d been put through a washing machine on spin cycle, and felt more confused as to the best approach. Confusion, and an inability to make a decision seem to be my bed-fellows at the moment… I also needed to take into consideration that any treatment outside of Leeds would potentially be more of a challenge.

My oncology doctor friend randomly contacted me the next morning to see how I was doing and I had to admit to her that I wasn’t doing that great… Confused. Worried. Worried. Confused. Scared. Worried. Confused. Unable to think straight. Wishing that I wasn’t a doctor and over-analysing everything.

She arranged for me to meet my oncologist, Dr Mike Snee, that day. Thank you both for going out of your way to accommodate a slightly crazy, or should I say crazed, doctor-patient.

Dr Snee thankfully had a very pragmatic approach (and didn’t say the work palliative – thankgoodness). I was encouraged to “face my demons” and look at my CT scan. Yes, the mesothelioma was scarily obvious, including some disease next to my mediastinum (the part of the thoracic cavity that lies between the lungs, containing the heart, trachea, large blood vessels and oesophagus).

We talked about chemotherapy, plus the option of adding an immunotherapeutic agent (Bevacizumab/Avastin) to the basic chemotherapy regimen (Cisplatin plus Pemetrexed), on the basis of data from the MAPS trial http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(15)01238-6.pdf .

Bevacizumab is an anti-angiogenesis inhibitor, meaning that it stops the formation of new blood vessels, something that tumours grow in abundance! So, stopping new blood vessel growth, basically means stopping tumour growth too. But, fairly understandably, it also comes with additional side effects. And I would have to pay for the Bevacizumab as it is not yet agreed by NICE….

Chemotherapy sounded like a reasonable plan, a good plan, and I knew that it was the only treatment option with Grade 1 (the best) evidence. But I still felt as though I was going through the motions… Was this really happening? Did I really need chemotherapy? Me? Really? Surely not. I struggled with the need to agree to anything, when I still couldn’t quite believe I had cancer. Especially anything which listed “risk of death” as a possible outcome. How on earth could I have to sign up to this??

I managed to hold it together until the end of the consultation when thankfully Chris, the nurse specialist, who had been present throughout, took myself and Martin off for a cup of tea with a side order of tissues. Thank you Chris for picking up the pieces…… again….

Fortunately, Dr Snee seemed to realise that I needed a bit of direction, and arranged for me to see a surgeon in a few days. That surgeon was Mr Kostas Papagiannopoulos, who also very kindly spent a long time with myself and Martin. He is certainly an empathic surgeon with a twinkle in his eye!! He drew diagrams to explain things to us; that kind of approach really appeals to me. The Art of Medicine, or perhaps I should say Surgery…. He made the analogy that treatment would be like a journey, and that a decision about the next bit of travel would be taken depending upon response. “Bumps along the way” were also mentioned; a concept which has borne out as true already. Very true.

He had booked me for surgery in 3 days time – Monday morning 7 am! I agreed, reluctantly… one half of my brain saying “Just get on with it Mags” and the other saying “You’ve still got time to change your mind!”

The illustration used in this post is taken from here http://www.myspecialks.com/2013/06/denial-not-just-river-in-egypt.html

This post is dedicated to Dr Laura Waters for being an all round star.

 

 

 

 

 

Part Five – The Terrors

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As some of you are aware, I am writing this in retrospect: This works well in that it gives me time to reflect upon events, and perhaps give additional perspective, but it means that I am not really keeping you informed with what is going on with me! I hope that you don’t mind too much… This part is going to be a bit introspective and I think difficult to write, but I want to put down in words the significant psychological challenge that follows the diagnosis of an incurable illness.

You may remember that the first step in my diagnosis was an abnormal chest X-Ray. The knowledge that I had fluid on my lung changed my behaviour immediately, in a negative way. Suddenly, I was no longer confident in my ability to cycle home, and had to have a lift. If I had not known about the X-Ray, I would have just cycled and got on with it. I may have struggled, and wondered why my breathing felt a bit restricted on going uphill, but I would have just got on with it… because that was what I did. My usual state being that of determination and confidence in my ability to succeed.

I have no memory of the day after learning of the CXR result.

The day following this, I most certainly do remember. I remember it because I had an overwhelming feeling that I was going to die. I was going to die.

I was going to die.

This was the first of a number of events that I now recognise as panic attacks. At the time I thought that whatever was causing the fluid on my lung was progressing…. It had after all, been over a week since the last X-Ray, and I knew that it was possible to deteriorate quickly when you had a pleural effusion.

It was a Saturday and I usually take the kids to their dance class, with a trip to Café 164 as a little treat. This Saturday though, I wasn’t sure whether I would manage to take them, as I was going to die. Seems crazy saying this now, but that is how I felt. I courageously asked my other half if he would mind not going on his beloved Saturday Morning Bike Ride to take me and the kids to dance. He eyed me very suspiciously, particularly as I suddenly felt the need to sit down on the kitchen floor, but thankfully he agreed (aswell as instructing me rather vigorously to “get up”)!

I phoned my best friend, Caroline, who thankfully had already said she was coming to visit. She was driving down from Glasgow. I was panicking that she may not make it in time; that I would have been admitted to hospital before then. Because I was going to die.

After an hour or so I began to feel better and could actually have minimal conversation, rather than staring silently at the world, wondering what was going on…

Later, Caroline arrived with her gloriously lovely dog, Sandy, and “dog therapy” began. It worked a treat. I could feel myself, and the whole family, relax. Who couldn’t, in response to his boundless cuddles, curliness, smelliness?? With support, I made it through the weekend, and the feeling that I was going to die lifted. The terror had subsided, for now.

Of course, it returned. And was more severe. I recognise now, that after the initial shock of realising that there was something wrong, anxiety came in waves, worsened by having a test or an appointment, but it was always there…. Part of me. Making me hypervigilant, then increasingly anxious…. and the cycle continued…..

Then, on occasion, and taking me completely by surprise, the terror returned. Just like that. One minute I was ok and everything was “normal” and the next moment, I was going to die.

 These moments started with a dizzy spell, but then in seconds escalated to heart racing and pacing the room, because if I didn’t, I thought I would collapse and die. These events were completely out of my conscious control. A small part of my brain rationalised that I was having a panic attack, but I still was unable to control what was going on.

This happened the night before I was due to have surgery, a VATS biopsy and talc pleurodesis. There’s a great leaflet here http://www.uhs.nhs.uk/Media/Controlleddocuments/Patientinformation/Heartandlungs/VATSlungbiopsy-patientinformation.pdf

I was sitting on the sofa happily on social media and (as far as I was conciously aware) not really worrying about the impending surgery. But then, suddenly, room spinning and the feeling I was being sucked backwards into unconsciousness. Then terror. I was going to die. I was going to die. Big time.

Was I having a dangerous cardiac arrhythmia (irregular heart beat)?? Had the mesothelioma started to invade my heart?? My fingers were white. The sheer panic I felt was reflected in the faces of both my mum and Martin. I phoned a doctor friend, Alison. Rather amazingly, she was on call and calmly, she sorted me out. I’ll not go into detail, but thank you.

The worst of The Terrors happened two days before I was due to start chemotherapy. I had been feeling quite fatigued… I’m still not sure if this was due to my state of mind, or mesothelioma itself. The “terror’ was so severe that I phoned Martin to come home from work.

I could barely sit up from the sofa.

I could barely walk.

I was literally shaking all over.

I remember gripping the car door handle and urging him to go through the traffic light on amber, in exactly the same fashion as I had when I was about to deliver my second child!! Yes, I went to hospital, because I thought I was going to die.

I was assessed in the Oncology Assessment Unit at St James Hospital. As soon as I arrived and the nurse did my blood pressure and pulse, I started to weep uncontrollably, gripping onto her hand for dear life. I was alive. I WAS ALIVE!!!!! Ok, so I was hypertensive and tachycardic (blood pressure and pulse high), but I was alive.

After half an hour or so, I had stopped crying and my blood pressure was back to normal. I started to feel guilty for taking up an assessment bed… I spent time with Chris the nurse specialist and was grateful for having met her earlier in my journey.

The staff on the assessment unit were amazing; incredibly compassionate. They didn’t make me feel judged for presenting with a probable mental health issue. They were also reassuringly thorough in their assessment, to ensure that, despite me stating I thought I was having a panic attack, there was nothing else underlying my symptoms. They didn’t make me feel like a crazy doctor (which I was starting to feel like..).

This was the last of The Terrors to date.

Starting chemotherapy was like being given new life. Although it brings with it it’s own worries and anxieties, these are nothing like “the pre-treatment void” which allowed The Terrors to develop. It has given me something positive to focus on, has allowed me to regain some confidence, and with it my sense of stubborn determination and will to live.

More on that later.

This post is dedicated to Dr Caroline Holms, Dr Alison Young and my husband, Martin. Thank you for supporting me through these events.

Part Four – The Big M

Red Boots on TrolleyOnly six days after meeting Dr Rodger, we were back again for results.

Before that, I had a further CT scan to look for evidence of a primary cancer in my abdomen or pelvis, plus a brain scan as I’d been having headaches. As I was a seasoned patient by then, I rather bravely swanned into the radiology department on my own, armed with my water bottle to fill my bladder. Despite this scan happening in a different hospital, it happened to be the same technician who took my details and inserted the cannula, along with a bit of banter. All very reassuring and I felt as stress free as one can in these situations. But my calmness was not to last….

Into the scanner. Come on Mags – you can do this! The contrast went in, and worryingly I started coughing. I tried to go back to my “happy place”, this had worked well during the previous scan, but I did not feel right. The radiography assistant came in to check that I was ok, i said yes and the scan continued to my brain. In reality, the scan was over really quickly, but it felt like an age! I wanted it to be over! I could feel myself getting stressed and panicky; I was so glad when it was finished, but I still did not feel ok. I felt all wobbly and could feel my face burning. The radiologist was called; was I having an allergic reaction? I stated that I usually got a rash on my neck when I was stressed, and I was probably just anxious? The radiologist ASKED ME if he should give me anything for allergy. How would I know? The joy of being a doctor patient. I couldn’t see the rash, or my face to aid in the decision making process. In the end we opted not to, but as I still felt wobbly, I went to the recovery room. I saw my face in the mirror – it was completely flushed, much redder than my usual stress rash.

I laid there, flat on my back on a trolley in recovery, staring at my red boots and wondering about the unreality of the whole situation. Being on the “other side”…. Oh what was I doing there?  After a few more checks by the doctor, and calling on my long suffering husband for support and a hot chocolate, I eventually I felt well enough to go home. I was given a little warning card on “delayed reactions to CT contrast”. And.. a few hours later, there it was. A widespread rash on my trunk. So, it hadn’t just been stress after all. I took some anti-histamine, messaged some doctor friends to calm my nerves (you know who you are, thank you), and in the morning the rash had pretty much gone. The whole experience had played havoc with my anxiety levels though!!!!

Back to the follow up appointment….

Quite straightforward really. The FNA from the glands in my neck was benign (negative) – wahey!!! But, and quite surprising to me as I know that the pick up rate from pleural fluid is quite low, cancer cells had been seen in the fluid. (But then again, maybe not surprising given the ultrasound appearances with the cells floating round, seen even with my untrained eye lol). The cells were of “epitheliod line”, meaning that they originated in epithelium (skin, or tissues that line or cover internal organs), and more detailed tests were needed to tell us exactly what cancer cell type they were. This included the possibility of a spread from a breast cancer, and I was told I needed to have a mammogram. It also still included the possibility of mesothelioma. My husband told me that if mesothelioma was the final diagnosis, he would faint. Great!

I can’t say that I actually felt any emotion at this point. Everything felt like a bit of a dream and I was just going through the motions. I had felt so scared and worried over the past few weeks, but determined to face whatever came my way with humility, this was just some more news to deal with. Cancer was the expected diagnosis too… I could see things from a positive perspective; this was the next step towards an actual diagnosis.

I suggested to Dr Rodger that it would be ok to email any other results. She said to me that she would be much more comfortable with a phone call at least, if I wasn’t to come back for an appointment. In retrospect, of course she was right… I suspect I was just trying to be brave and save the NHS some time!!!

She called another 6 days later as I was stepping off the train at Kings Cross, London, and I missed the call… aaargh!! I was in London to be interviewed for a new film on PrEP (HIV prevention medication), the follow up to the PROUD film called PrEP17. (The link to the PROUD film is here https://vimeo.com/132412294)

Thankfully I was meeting a good friend and comrade, Greg Owen. We were planning to go to an event called Sextroverts, but in the end didn’t make it… We walked (and ended up going the scenic route as both of us relied on the other to find the way, and neither really knew exactly where we were going, just the vague direction…. I’m sure Greg will disagree with that though lol). I didn’t want to go on the Underground as Dr Rodger had said she would call back.

Which she did, and my phone battery went! Was on 17%, but the phone crashed!!! You couldn’t write it, honestly. Thank goodness I had written down the number so was able to call back.

So, I received my diagnosis of Mesothelioma on Greg’s phone. Something oddly comforting about that, as I knew that Greg too had received a life changing diagnosis a year or so earlier.

My initial response was “Oh, ok, that’s fine”. I think it had barely entered my brain, let alone registered. I thought, well, that’s good, less likely to metastasise!!!! Goodness. Dr Rodger confirmed the next step would be to have a VATS procedure. This is keyhole surgery using video which they use to get a formal biopsy, drain the fluid, plus do a talc pleurodesis. (A talc pleurodesis is used to stick the lung to the chest wall to prevent reaccumulation of fluid). I would then receive an appointment to see an oncologist with an interest in mesothelioma, Dr Michael Snee. She also suggested I look into the MARS 2 trial which compares standard chemotherapy to standard chemotherapy plus surgery to remove the lung membrane (pleura) and tumour. http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-looking-at-surgery-for-mesothelioma-mars-2 I did look it up later that evening, but again, it barely registered with me at that point.

For the rest of that evening, we walked around Soho, had a steak (!) and I had a glass of wine (only one or two, surprisingly) and went home relatively early.

Somehow, I managed to be filmed the next day, (thankfully I was amongst friends – bloody love yous..) and interviewed for a potential podcast on HIV by the Naked Scientists. I think was relatively “myself” on film, but who knows!!! I will find out at the Family and Friends viewing in April before the film goes out for all to see 🙂 Watch this space – I’m sure I’ll put a link on here.

Then on the train back home to Leeds, and back to reality. Mind whirring… Mesothelioma, mesothelioma, mesothelioma… And how to tell my husband Martin…