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

IMG_8041

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…

Part Three – One Stop Shop

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It was Friday the 13th January 2017. I had my appointment at St James University Hospital, Leeds in the rather beautiful Bexley Wing –  the Cancer Centre. The Bexley Wing is like an extremely glamorous hotel. On entering the building, you walk into a huge, light filled Atrium. This is decorated with tree trunks carved into seats, an art or photography exhibition, and a grand piano is often being played: no matter what the tune, it always sounds beautiful but melancholy…

First I met Yvonne, a Health Care Assistant. I remember her name as she was great at #HelloMyNameIs. Lung function tests showed my lung function was around 2/3 normal and my oxygen saturations (levels) were measured. I said that I didn’t want to know the result unless it was 99%….. It was 99%. Phew!

Then Martin and I were greeted by the lovely Dr Kirsty Rodger, Respiratory Consultant. I definitely did well having Dr Rodger as my Consultant – Thank you Dr Rodger for your support. Also in the consultation was Christine Thomas, Lung Cancer Nurse Specialist. A holistic approach from the start – impressive. I didn’t realise that it is a national recommendation to have both doctor and nurse specialist present when giving a cancer diagnosis, but it certainly did make a positive difference to our experience. (And has continued to do so). https://www.nice.org.uk/guidance/cg121/chapter/1-Guidance#communication

We briefly discussed my CT scan report and went over the usual things: Presenting Complaint, Past Medical History (how weird that ones mind just goes completely blank, I forgot ALL my PMH!!) and Examination. During the examination, I was rabbiting on in my usual way that I would with patients and asking Dr Rodger lots of questions too – some perhaps a bit too personal – sorry!! But I learnt that we had some things in common, including having both trained at the Glasgow University. Dr Rodger also told me she had a sister who worked in ID/HIV in London – I later had a “eureka moment” that this was likely to be Dr Alison Rodger, chair of the BASHH/BHIVA PrEP guidelines writing group, of which I am a member, so had obviously worked with her and knew her!!! A small world….. Again bringing home the weird experience of being both doctor and patient.

Then we came to the more detailed serious discussion. The scan suggested cancer. An incurable cancer. The differential diagnosis being metastasis (spread) from another tumour, such as breast cancer or lymphoma, Primary Pleural Adenocarcinoma (which admittedly I had never heard of) or Mesothelioma. It seemed as though Dr Rodger was expecting it to be adenocarcinoma, and was talking about tailoring treatment according to what markers were expressed; ALK or EGFR. Again, I had never heard of these!! A lot of learning to do in a completely different field of medicine from that which I was used to!

It may seem strange, but being faced with a terminal diagnosis from the outset, my initial, impulsive, response was that “I don’t want treatment”. In my head, all that I knew was seeing really REALLY sick patients on the oncology wards when on call as a junior doctor, mainly admitted due to side effects of treatment. What was the point in going through that if I was going to die anyway? I have since learned that only around 3% of people receiving chemotherapy are admitted, so what I knew was a fairly skewed reflection of reality! My gut reaction was that I was well, I could still walk, cycle and that I wanted to “be myself” and away from hospitals for as long as possible, if death was inevitable. Obviously, and on reflection thankfully, I have since changed my mind…

Even though this appointment was hard, I felt a strong sense of relief to share my (as yet unconfirmed) diagnosis with medical professionals. Even though they couldn’t live the experience for me, I felt supported and less alone.

We spent some time with Chris, the nurse specialist afterwards. She introduced the idea of lots of issues we had never even thought about. Again, so good, refreshing even (!) to have both a medical and psychosocial nurse consultation at the same time. It made me consider what happens when we see a patient newly diagnosed with HIV in clinic. I was thankful to realise that we have the same holistic approach, including introducing people to patient representatives. Looking back, it is other Mesothelioma patients who have taught me to have hope…. HOPE!!!!, and I think that being introduced to a patient representative at some point would have been the icing on the cake. I do realise that Mesothelioma patients are a fairly rare commodity however, and “young” females living with Mesothelioma even rarer… Thank goodness for social media and the wonderful Mavis Nye for bringing us all together!!! I digress…

My main concern was for my kids, how to speak to them, what support was available for them? We were given this leaflet and found it extremely useful http://www.macmillan.org.uk/information-and-support/coping/talking-about-cancer/talking-to-children/advice-on-talking-to-children-about-cancer.html#19687. It seems that there is support here for older children and teenagers, but for younger children it is mainly via the hospice – and we were certainly not ready for that yet. (Please don’t worry about this though – the school has been AMAZING and has bent over backwards to support us all as a family, to them I am greatly indebted – thank you Roundhay School Primary – you’re fab).

I wasn’t sure when I went along to the appointment if anything else was going to happen that morning, but it did! Like everything happened! A true One Stop Shop. Firstly blood tests, and for the first time, the not so good bit, the waiting room was far too small for the large number of people waiting. About the size of a small toilet!! Perhaps it was just a busy day.

Then onto radiology for a fine needle aspiration (FNA = removal of cells from a lymph node or gland using a needle) of some glands in my neck, plus taking off some of the fluid on my lung, and possibly a biopsy of the pleura.

The FNA was far better than I would have thought. Sorry I can’t remember the name of the radiology consultant who did this. She was very accomplished with the local anaesthetic and I hardly felt a thing. The local anaesthetic for the possible pleural biopsy was a different matter though – yeowch!!! In the end after removing fluid for testing for infection (including TB) and cytology (looking for cancer cells), my lung expanded and the biopsy was looking a bit more difficult.

At this point I made the mistake of agreeing to look at the ultrasound images (so far I’d declined to look at my scans) and could quite easily see the thickened pleura with whorls of tumour cells literally falling head over heels off into the pleural fluid… Gosh…..

A joint decision was taken not to do the pleural biopsy now my lung had expanded, no one wanted fun and games on Friday the 13th!!!

Photo taken from http://johncooperarchitecture.com/the-bexley-wing-st-james-institute-of-oncology/ 

Coming Up

Part Four – The Big M

Part 2 – Phone a friend, CT number one and some results

scan-report-photo-2

Realise that in my last post I referred to my pending CT scan as though it was all arranged. In fact, it wasn’t quite a simple as that.

I also realise that I hadn’t even told you what all the fuss was about, why I was so worried about the prospect of needing a CT… Well.

In the end, a GP called me back and told me about my chest Xray. She read out the report verbatim. I remember hearing the words “Moderate pleural effusion, loss of lung volume, pleural thickening, fluid in the horizontal fissure, differential diagnosis: infection or malignancy”. Basically, fluid on the lung, with thickening of the membrane around the lung, likely to be due to infection or cancer.

Could it be TB? I was certainly at risk. I had worked on the Infectious Diseases ward at St James Hospital and knew I had virtually no immunity to TB when last checked. But, I knew that I had no other symptoms of TB…. No fevers or night sweats…. DARN!!!!! Now I knew there was a problem, I also knew that it had been going on for a long time, so whatever it turned out to be, was unlikely to be a straightforward infection. I recalled having some right sided chest pain which resolved spontaneously: my GP confirmed this was as long ago as November 2015. Oh dear. I had put this down to commuting with my bike and having pulled a muscle. I was a “fit” 41y old at the time, why would it have been anything but????!!!!!

My mind went into overdrive. I had left work at Mortimer Market Centre as a doctor, and I arrived home dancing the tightrope between doctor and patient. I needed to know what was going on. At this point I hadn’t yet been given a date for CT scan.

So, I did what I could do, and contacted a previous colleague and friend, a Consultant in Respiratory Medicine. I felt uncomfortable about doing this, and was aware that this opportunity was only available to me because I was a doctor. How on earth did other people cope with being in limbo-land? I was able to justify my actions to myself, because I  knew that if a colleague contacted me for help, I would do my utmost to support them. We spoke, and he was able to talk me through things.

I had been listed for the Respiratory MDT meeting happening the following week, so this meant that I would definitely get my CT scan before then. I told him I was terrified and would really value seeing him in clinic as a familiar face (I know, probably stepping over the line a little – sorry). He handled me (and my anxiety) very well and suggested that perhaps he wasn’t the best person to see me, but one of his colleagues Dr Matt Callister or Dr Kirsty Rodger would be. I didn’t know them, or their role, as it had been over 10 years since I had worked in the department. I persuaded myself not to Google them. I was Eternally Grateful for this supportive conversation. Dr John Watson – thank you +++

……..Okay, so I managed to hold off Googling Dr Callister and Rodger for a whole 24 hours. And when I did, it turns out that their specialist interests were Lung Cancer. Hmmm.

So, the CT happened at Leeds General Infirmary. All quite impressive. Not a huge waiting time. Lots of checking and cross checking of identification and medical history. Didn’t have to wear a gown (yay!). CT contrast makes you feel flushed, heart racing, a  bit like taking poppers, I would imagine. It also makes you feel as though you are going to wet yourself – who knew?! I felt that I really should have known this having ordered 100’s of CT scans, but I didn’t. It made me think that perhaps medical/nursing students should actually experience the process of having certain tests, to enable them to be able to explain things to patients more effectively.

The next morning I took the kids to school as usual, arrived home and sat down on the sofa. It was 5 minutes past 9. The home phone rang. No one usually rings this phone, and usually, I don’t answer it. But, I had a feeling that I should answer this call. And I was right…

It was the GP surgery. Could I go down that morning at 11am to see my usual GP? She had asked to see me. Oh. That doesn’t sound good. It felt like each step in the process was confirming what I had dreaded as soon as I’d had the original “call to CT”.

And, of course, I was right. The CT report was pretty horrendous, and I say that as a glass half full person. To me, it was simply confirming what I had expected, and my lovely GP ended up more upset than I was. I took away a copy of the scan report, which I’m glad, as at the time, the extent of disease didn’t really hit me.

Findings: There is irregular, circumferential pleural thickening throughout the right hemithorax associated with a moderate pleural effusion. The pleural disease is nodular and highly suggestive of a malignant process. Passive atelectasis is present in the right lung but no primary lesion or endobronchial disease. The left lung and pleural space are clear and there is no calcification on either side…..

Comment: Malignant looking right-sided pleural disease, for which the differential lies between primary mesothelioma (which seems unlikely in a patient of this age), and metastatic disease.

NB Whenever I have seen the comment “seems unlikely in this patient because..” written in a radiology report, then that differential turns out to be the correct diagnosis….

I walked up the hill from the GP surgery, with my other half Martin, to Stories cafe in Oakwood http://www.storiescafe.co.uk – worth a visit if you live in and around Leeds! Makes me think I could be in beloved East London. And yes, I could still walk and cycle uphill!!! Unusually for me I chose to sit facing away from all the other cafe goers. We sat, and shed some tears, trying to take in the enormity of the result I had just been given. How do you begin to come to terms with a tumour that is circumferential throughout your hemithorax?

Coming up

Part 3 – One Stop Shop

 

 

 

Part One – The Beginning

mags-selfie-01012017

I took the above “selfie” on New Years Day 2017, full of good vibes from the previous evenings celebrations, and hope for the year ahead. I had no idea that within a few days, my life, and that of my precious family, would have taken a bit of a battering, to say the least!

I’d had a bit of a cough, for a few weeks… Well, probably a bit longer than the two months I eventually admitted to my GP. But, I’d put it to the back of my mind and rationalised it, a dry annoying cough, it would go eventually, surely?? Asthma, could I have asthma? Not been wheezy, so unlikely…Maybe it’s pertussis, that hangs around for a while… The “100 day cough”…  I had far too many other interesting things on, to PrEP Up My Life, than worrying about a cough.

But it didn’t go, and I did start to worry. So, the week between Christmas and New Year I finally saw my GP. “Hmmmm, you have slightly reduced air entry at your right base, I’m sure it’s nothing to worry about. We need to do a routine Xray anyway”.

So I made my first trip to the radiology department in the Bexley Wing. “Your XRay’s not requested on the system” “Nothing’s ever straightforward when it’s you doctors” says the receptionist. Great. How did she even know I was a doctor?? “It’s okay – I’ll just wait.” And I sat there crocheting a toy monster called “Bleep” for my 6 year old, trying not to panic. (For any other crochet fans out there see https://www.thetoftalpacashop.co.uk/PD.aspx?product=edwards_collection/Imaginarium/-Edwards_Imaginarium_by_Kerry_Lord )

bleep

The Xray happened, after a short wait in a hospital gown tied up so tightly as to not show any naked flesh (aka vulnerability) to the other people (men) waiting (fully clothed), that I almost strangled myself. My panic reached exorbitant levels when the radiographer asked for a lateral film, despite protestations from the technician that it hadn’t been requested. She also asked me to see my GP within 48 hours with a deadpan look on her face. “Oh! But call first to make sure that they have the result”. Double great. Didn’t need my years of work in sexual health, tuned in to the minutiae of body language, to work out that something pretty serious was afoot.

I went back to work after the New Year, and called my GP each day – no result. Then on Thursday 5th January 2017, I got a call. “Hi love, just the receptionist at your GP surgery. Could you come in this afternoon for your bloods before your CT scan??” And for the second time in a week, time stopped, and my mortality flashed before me. All I could think was “My kids. My beautiful, beautiful children…”

There was no way I could continue with my clinic and I went in search of trusted colleagues and friends, thankfully in abundance at the lovely Mortimer Market Centre. My clinic was covered (you know who you are – thank you), I was given a time to cry, incredible support from an number of people, and a cup of tea (you all know who you are – thank you), cancelled my clinics for the next week, cycled to Kings Cross and got my planned train back home to Leeds. (For those not aware, I commuted every week from Leeds to London to work taking my bike on the train).

Still completely stunned, I had “my bloods” done the next morning and had a call later that day to go in for a CT scan on the 10th Jan.

Coming up

Part Two – CT shenanigans and some results