Dancing with death and depression

BF064F93-967C-49B0-801A-F4ED94B333A6It has been over six months since I last wrote a blog. The reasons why will become apparent if you read on. My apologies to anyone who has been in touch and I haven’t responded, the same reasons apply! Your contact has been much appreciated. I am slowly working through messages and will be in touch.

Let’s rewind to May 2018. It was my birthday and I took the above photo on the way out for a family meal at our local and infamous Italian restaurant, Rico’s. The problem was, I could hardly eat anything as my abdomen was distended and I felt very full very quickly. I was also extraordinarily tired. The following week was half term and we went away glamping to Norfolk. A fantastic campsite for anyone interested! https://www.swallowtailholidays.co.uk

I remained knackered and as a result, struggled to enjoy the holiday. I was also waking up during the night with sweats and chest/back pain, having to take extra oral morphine. Not a good look, eh. 35B53BB4-D5D4-4942-B927-CF284C5D618B

Fast forward to the end of June and the situation had deteriorated significantly. I felt like I was dying…. Probably because I was. The night sweats had become “all day and night sweats”, the tiredness had become an inability to get off the sofa unless I really pushed myself, and I fell asleep frequently. I had lost lots of weight and my skin was hanging off me. There were horrible symptoms too, like an increased gag reflex on taking tablets or cleaning my teeth, sometimes making me vomit. I said to Martin that I felt like I needed someone to look after me, and I was increasingly unable to do simple things like make a meal. I stopped driving as it felt unsafe, and I stopped doing my beloved Pilates classes. I stopped reading as I couldn’t concentrate, and I stopped knitting. I stopped using social media. I stopped having a shower and wearing makeup. It is at this point that my in built, lifelong, taken for granted, conviction changed from “I CAN!!!” to “I can’t“. I do have some happy memories of this time though, time spent together with my family, watching World Cup Football!!

Because I felt so awful, I ended up on the Oncology Assessment Unit. My resting pulse rate was around 125, and I had raised inflammatory markers, but wasn’t septic. Nothing else was found. The next morning I was back up at the Leeds Cancer Centre for radiotherapy, which had been started because of the pain. Following this I was meeting a friend Vicky, with a history of cancer herself. You can see her blog here. http://carryoncancer.blogspot.com

On meeting her, I just burst into tears, explaining how awful I felt. Thankfully for me, she took control which was exactly what I needed!! She turned around and took me back up to the hospital, back to the Assessment Unit. This time, I had a CT scan (thank you again Alison Young) the results of which were enormously scary. Significant disease progression of the right sided disease. Mediastinal disease. Peritoneal disease. Metastasis in my left lung. Enlarged lymph nodes everywhere. No wonder I felt so bloody awful!!!!!

I had an appointment with my consultant the next day. Obviously, the immunotherapy wasn’t working and we needed a new plan. The only option was to switch to further platinum based chemotherapy. I was told that there was only a 10% chance that this could help, and there was a similar chance that it could make the situation worse (i.e. kill me). The likelihood was that it wouldn’t really change things. Having no further treatment was also something we discussed. With the way I was feeling, I could have taken this option, but my determination, albeit flagging determination, kicked in, supported by a “lets’s do this” attitude from Martin.

I started chemotherapy with Carboplatin and Gemcitabine two days later. I had already been referred to the Palliative Care Team at St Gemma’s Hospice, and the District Nurses.

Quite quickly I felt an improvement. The sweats improved and I was less fatigued.

Another problem was developing though. Anxiety. It reared it’s ugly head so quickly.  I was taken completely unawares until was right in the middle of it’s grip, smothered by it.  Rendered completely incapable. The “I can’t” voice in my head persisted, became louder and more repetitive. I would sit and wring my hands, rub my face and head, stand up and then sit down again over and over. Minutes and sometimes longer would pass with me staring into space. I ruminated over ridiculous things. I couldn’t sleep. I hated myself and my life, what I had become. An incapable individual. I knew that this was so wrong; I was at the end of my life and should be making the most of the time I had left, but I couldn’t.

One morning, after a particularly disturbed night, Martin took one look at me and said “Ring the GP”. I felt very unsettled by the way he had looked at me and realised that I had to do something urgently. Thankfully, one of the GPs rang back within an hour and was absolutely great with me. He suggested starting medication (which I was glad about and ready to accept). He suggested Mirtazepine (which I was glad about too, because it also helps with sleep and appetite, and I was hoping for this). He also referred me to the Young Persons Support Team at St Gemma’s Hospice as a lot of my anxiety was around the boys and how we would get through the summer holidays with my deteriorating health.

The anxiety symptoms settled within a few weeks and I was so grateful for this. However, what I didn’t anticipate was the depression that followed. I felt like I was staring into a big black hole. Each day seemed to stretch out forever in front of me and I didn’t know how I was going to get through it. Physically I should have been able to do things like make a meal, but mentally I could not. I did not have the motivation. It was as though I needed to retrain my brain to do all of these things. I couldn’t understand how I had enjoyed things before, how I had been happy! What did I used to do during the day to pass the time? I still couldn’t concentrate enough to read, so just sat there feeling really really horrible and sorry for myself.

Thankfully things did improve. And I think, luckily for me, fairly quickly. At the end of the summer holiday, we managed to get away to Inverness to stay with Martin’s parents. The combination of time with my family, time on the beach and being “a bit looked after”, worked wonders. By the time we arrived home, I was feeling much better.

I have now completed 5 cycles of chemotherapy and despite some niggling concerns, I am vastly improved as far as the mesothelioma goes. I had a scan after cycle 3 which confirmed that there had been shrinkage of tumours. Hallelujah. Mentally, I am almost back to “normal”, but have lost so much confidence. I can’t imagine doing things like getting on a train to London by myself, something that used to be part and parcel of my everyday life.

What I haven’t mentioned is that whilst all this was going on, we were having an extension built on the back of the house. I know that this didn’t help the situation!!

So, here I am. At one point I thought I would never be able to write a blog again, so it’s quite a big deal to me that I have managed it. Looking ahead with hope again. All being well I will complete Cycle 6 of chemo and I’m already looking at clinical trials (again). I am excited to think that I will probably see the boys birthdays in December and hopefully another Christmas!!! Grateful for our NHS and for having been given another gift of life.

This blog is dedicated to Team Portman. Goodness!! I feel so emotional thinking of how you supported me and the family at this difficult time, and continue to do so. Thank you for the child care, the meals on wheels, the cups of tea, the supportive texts, being a listening ear, just letting me spend time with you when I needed to get out of the house. Thank you Jacquie Butterworth for masterminding the Team Portman calendar (not to mention being an all round star). Extra special thanks go to Anna Crossley for organising the meals on wheels, but in particular for seeing me through some of my darkest days. Without you babe, not sure what state I’d be in. Thank you.

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Tea and Sympathy

FBB0DA03-59C5-4F12-8975-6F60E58A7F5DThis blog relates to how I was feeling a few weeks ago. I use the past tense when writing because some symptoms are starting to feel a little better…. 🙂 

I’ve spoken a lot about how it feels emotionally to live with mesothelioma, but I’ve not talked about the physical symptoms much recently. Probably because I was trying to ignore them away!! So here goes.

Following the Vinorelbine chemotherapy in January, I had a lot of pain at the tumour sites, particularly at the lower third of my ribs (ribs come down a long way at the back I was reminded!). This pain also seemed to radiate forward into my abdomen, but I thought little of it, and it seemed to settle. Associated with the pain was some generalised swelling over my ribs, which I put down to “inflammation” associated with the chemo. It became difficult to feel the “dips” of my intercostal spaces (in between my ribs). Again I didn’t worry initially.

I did start to notice that my abdomen was a little more distended than usual. I put this to the back of my mind, thinking I was a bit “bunged up” shall we say, but I wasn’t really. Large meals were becoming a problem for me, not because I didn’t have the appetite, but because I couldn’t fit them in! And the distension got worse. I also realised that I was needing to take painkillers not for chest pain, but abdominal pain. Then there was also this odd swelling on the R side of my belly which made me look as though I had gained weight, and had a spare tyre on one side only. I think this is fluid in my abdominal wall, as in the morning there are deep imprints in it. Now it is getting better, it is almost gone in the morning but re-accumulates a little as the day goes on.

The generalised swelling in my chest wall subsided, but underneath I noticed that my ribs felt knobbly and irregular. I had some lymph nodes above my R collar bone at diagnosis, and these are back with a vengeance. Plus, whilst washing my arm pits, I noted some new lymph nodes there. Darn!!

Self diagnosis (unconfirmed as yet on investigation) : peritoneal disease, rib metastases and new axillary lymphadenopathy.

Double darn.

The shortness of breath was creeping back too…. Imagine trying to yawn, but you can’t. This is what it’s like trying to take a deep breath on the affected side. You just can’t quite get your lung to inflate properly. Initially this feels as though you have a belt around half of your chest, but latterly I felt as though I had a rock sitting in my chest at the level of my diaphragm. Even stretching my R arm into the air makes me aware of the Meso, as it pulls and feels tight. Weird weird weird.

So, I had all these symptoms and had self diagnosed, thinking I was handling it ok. This is just what happens with Meso, right? I had already braced myself for it. I told my oncologist of my symptoms at my next appointment (3 weeks ago now.) He had the heads up regarding a problem already as had seen my CXR, which, despite my symptoms starting before immunotherapy,  had shown subtle progression of disease since starting immunotherapy. My nurse specialist had been invited into the consultation (always a bad sign lol).

We went through the usual consultation routine, and I presented my case to him as though I was a doctor presenting a case on the ward round. I could handle this. I could!!! An examination came next as per medical routine.

But then came the shocker. Even though I knew what was going on in my body, and had known for a good few weeks, to hear someone state things back to you, makes you realise that you are in fact the patient not the doctor, and is still a shock. In the end I wasn’t prepared to hear the words “I’m not happy. I’m not happy at all with the way that things are going”. I couldn’t handle it, I couldn’t put a brave face on it. We discussed the fact that subtle signs of progression on my CXR could be signs of well documented “pseudo-progression” since starting immunotherapy. This is thought to be down to immune cells being recruited into the tumour as the immunotherapy starts to work, but gives the false appearance on imaging of tumour growth. Dr Snee could see the areas of concern on my ribs and thought that I had fluid in my abdomen, likely indicating peritoneal disease. (In fact, I have since had an ultrasound which showed no fluid in my abdomen, hallelujah!!)

I was a bit of a mess after this consultation and was sincerely glad that Chris my nurse specialist was there to pick up the pieces. We also managed to locate Martin who handily works in the Bexley Wing. I felt as though once again I was staring death right in the face. Plans for the summer would need to be brought forward in case I wasn’t well enough to make it.

Somehow, I made it home and phoned a friend; my lovely friend Jacquie who has been there for me on so many occasions since we met soon after the birth of our first children, ten years ago. It’s amazing how sharing a cup of tea and some tears can do wonders. I felt calmer and more able to face whatever the future may hold. Thank you Jacquie for being there for me. This blog is dedicated to you.

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Outstanding Contribution Award

E7113C4E-3FD6-4E9B-BB49-36A90EDC4B09This blog is going to be different!!! Mesothelioma is NOT going to be the main focus…. hallelujah!

The beautiful, charismatic city of Edinburgh has been my home over the past few days or so, as I have been attending another fabulous conference; the 4th Joint Conference of the British HIV Association and the British Association for Sexual Health and HIV. Spring also appears to have sprung, bringing out the Princes Street Gardens in all their daffodil glory.

I was asked to chair a session around 4 months ago, how could I say no??!!! Due to the unpredictability of mesothelioma I was admittedly thinking, “Will I be in any fit state to go by that point?” Let alone chair. So, it was exciting already, even for me to have just made it there!!! The session went well and was a bonding experience with my co-chairs. Interestingly, the conference opened with a lot of discussion around Cancer Immunotherapies and their potential role in HIV, particularly PD-1 inhibitors. You will be able to view the talks online here soon. http://www.bhiva.org/AnnualConference2018.aspx

 

 

However, the main reason for my determination to get to the conference, was that I was going to be awarded the BASHH prize for Outstanding Contribution to the speciality, predominantly for my work in PrEP. Wow. Thankfully I had prior knowledge, otherwise I don’t think I would have been able to hold it together!! Having had my personality assessed a few times over the course of my career I know that I am a “yellow”, with public recognition meaning a very great deal. https://general-psychology.knoji.com/which-color-personality-are-you-red-blue-green-or-yellow/ And wow it was a great deal. And is. I am still on a massive high. Thank you to the people who nominated me,  voted for me and those who took the time to say well done. Not often in your life that these things happen. Whoop!!!! (Just in case you didn’t know already (!) I had bought a new dress in celebration. That line’s for you Chris Ward lol)).33E3644A-40F2-45EA-AA68-913F0AAD97F6

I spoke to so many people and there was a great deal of conversation about my health. People were kindly worried about me repeating myself, but the funny thing was, despite talking (a lot) re Mr Meso, I actually found myself thinking about him much less, feeling more positive and getting some confidence back. And perhaps I feel a little better overall??!!! Certainly amazed that I made it relatively unscathed through 3 late nights with no daytime naps!!!

So. Feeling a little bereft that the conference is over, but so happy to have been reminded again that I work in an amazing specialty with truly special people; doctors, nurses, health care support workers, health advisors, psychologists, pharmacists, physiotherapists, occupational therapists, researchers, long term HIV survivors, peer support workers, those in the community sector, activists, those in the commercial sector and those who I’ve forgotten (sorry)!! We all work so hard and make our own outstanding contribution, a tribute to kindness in healthcare. I love the NHS!!!!!

I’m going to spend the weekend gazing at this sticker from @ingridkyoung about her new project looking at the role activism played in the PrEP story (I hope that’s correct Ingrid!!!) and spending time with my beautiful family.

 

Love, hope and respect to you all xxxxxxx

 

The T Cell and the Butterfly

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Well.

I am at this point much earlier than I anticipated. I had hoped that immunotherapy would be a treatment choice I could keep in the bag for a rainy day….. hoping that that rainy day wouldn’t come for a year or two. But with no response to second line chemotherapy, and continuing disease progression I needed to do something whilst I was still well.

Although excited by the prospect of immunotherapy, I have also a feeling of reticence, because what if this doesn’t work? What next? There really is very little else other than more chemotherapy with a different drug…. with the distinct possibility that it may not work. This is why I have been so interested in the MiST trial http://www.mesothelioma-research-leicester.com/mist/ because as far as I understand it, you can “roll on” to another treatment arm when you fail one. But hey ho. The trial isn’t open and I can’t wait any longer.

I can’t say I feel entirely comfortable with the way I am accessing this treatment. This is because for mesothelioma, immunotherapy is not yet available on the NHS. Had I played my cards slightly differently, I could have enrolled on the PROMISE trial, a “cross-over” trial of chemotherapy vs immunotherapy. If you start on chemotherapy, you “cross-over” to the immunotherapy arm when the disease progresses. This trial has recruited really quickly in the UK and is now closing!!! The CONFIRM trial is still open, but this has a placebo arm and I wasn’t sure about that, having had fairly rapid disease progression. See my previous blog for more discussion on this!!!

So, I am paying for my drug treatment. Luckily for me, Leeds Teaching Hospitals operate what is called “Additional Private Care”, a top up on your NHS care. I don’t feel comfortable with this either!!! Not comfortable with this for a number of reasons.

The first, obviously because I have to pay. But, there is money left from the crowdfunding that Laura Waters so kindly set up, almost enough to cover enough treatments to see if the drug is working, so that is a good start. There is also the compensation money from the government we always said we would set aside for treatment if needs be.

The second reason is that because I am accessing a drug outside of a clinical trial situation, all my data won’t be captured and won’t contribute towards others potentially getting access to the drug in the future. How well the drug works, whether it improves my survival, whether I get side effects, whether these are problematic – all of this information will not reach a database. More data is needed because at the moment there is only early data from small studies suggesting a benefit. But my data will not be adding to the body of evidence that may eventually lead to NICE approval for this and similar drugs. It may as well be flushed down the toilet, and I’m not proud of that.

Lastly, I find the concept of private medicine inherently wrong. Why should I be able to access a medicine in my time of need, just because I can pay, when my friend across the road can’t afford to? I don’t want to be part of the blurring of boundaries between NHS and private care, the take-over of NHS provision by private companies via the back door since the Health and Social Care Act 2012. But faced with a terminal illness and the accompanying short term choices , I am part of it and I actually feel as though I have no choice.

So. I had my second dose of Pembrolizumab yesterday. It is given as an intravenous infusion over 30 mins every 3 weeks. Nothing compared with the whole day event when you have standard chemotherapy with Pemetrexed and Cis/Carboplatin! Thankfully, the first time, I had a bit of salt water through the drip to begin with. This meant that when I developed a flushed red face, I knew it was definitely just my old friend anxiety, and not a treatment reaction!!!! I had no problem with the actual drug itself and have been completely fine since. Maybe a little bit tired the day after, but no other side effects, and I also seem to be sleeping a bit better at night. Hallelujah! With a treatment such as this though, side effects can occur further into the course, so I’m not guaranteed to be out of the woods forever. It does make me feel quite positive about the treatment so far though, as if the chemo is a crude (but necessary) way of bashing the cancer (and my body at the same time) but immunotherapy is working alongside me and my immune system (I hope). We shall see!!

Digressing slightly, I spontaneously visualised a butterfly the other day, which I’m taking as a good sign. When I saw it, I decided to visualise it removing the mesothelioma cells. I had a feeling that the butterfly was symbolic and it seems that this is true. Mr Google says this “Butterflies are deep and powerful representations of life. Many cultures associate the butterfly with our souls. The Christian religion sees the butterfly as a symbol of resurrection. Around the world, people view the butterfly as representing endurance, change, hope, and life.” Let’s hope, eh.

For those who want to know more about the immunotherapy I am having, it is a PD-1 inhibitor called Pembrolizumab. It is known as a “checkpoint inhibitor”. Basically it “wakes up” part of the immune system which the cancer has managed to evade. It allows our T cells, an immune cell which protects us from disease, to recognise and kill the cancer cells. Sounds great doesn’t it. However, the downside is that it doesn’t work in everyone. More research is being carried out to find out why.

A small trial in mesothelioma (Keynote 028) showed that of 25 patients treated with Pembrolizumab, 20% had shrinkage of tumour and 50% had stable disease. Encouragingly, the responses seem to show more durability (last longer) than the response to chemo, but again, it should be stressed that this is only a small trial and we need more data. You can see the study results here http://www.thelancet.com/pdfs/journals/lanonc/PIIS1470-2045(17)30169-9.pdf. There is also a good overview of checkpoint inhibitors from Cancer Research UK here http://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/immunotherapy/types/checkpoint-inhibitors

I will let you know how I get on.

The Madagascan Periwinkle Affair

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Me (tears flooding down my cheeks): I miss the old me and my old life….

 Me (rationalising): But I guess the new me isn’t that bad really….?

 Me: Just a bit bloody boring!!!

 Him: Still quite funny at times though…

 Both look at each other and laugh 🙂

Well! Where to start with this blog – I’ve been writing it for well over a month now (probably more like three) and so many things have happened in that time….

Lets start with 2018. I was feeling well (very well, probably because my chemotherapy had been deferred but only after I had taken my steroid pre-med!) and we had the afternoon pleasure of going to a New Years Eve party at a friend’s house. Proper live music, loads of kids, food and everything.

As we were leaving the party the kids shouted “Look, a falling star!!!” In fact it wasn’t, but something far more exciting: a green and gold meteor – most incredible!! Great footage here on Twitter. https://twitter.com/tomjavens/status/948255670326956032  Surely we will have been brought luck having seen that? My oldest son, very pragmatic, doubts my logic on that one.

On to the train station to pick up my mum, grab some food, then home & putting the clocks forward (!) to celebrate the bells early with the family. We all had a soft drink of something sparkling in champagne glasses. A new way of celebrating, but great to bring in the New Year with all our little family. Martin and I did still stay up until “proper midnight”… rude not to!

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 A lazy New Years Day and then bang! Back to reality. Kids back to school and I started Round 2 of oral Vinorelbine chemotherapy.

Why was I taking Vinorelbine you may ask? Well, after confirmation that the meso was growing again, I took a bit of time to come to terms with things, read over options, and found that I had lots of questions. I knew that immunotherapy was on the cards and would be a good treatment choice. However, I was also interested in joining a clinical trial at some point, and wanted to be sure that I wasn’t going to make a decision now, that would prevent me from joining a trial in the future. Supported by the team in Leeds (thank you, and thank you for picking me up again..) Martin and I travelled to Leicester to attend the dedicated mesothelioma clinic there.

The definite “air of camaraderie” and mutual understanding distracted you from how busy the clinic was (very 🙂 ). I bumped into a fellow #mesowarrior, Linda Lakin, making the whole experience even more of a pleasure. How lovely to sit and chat to someone who can relate directly to my situation, in person and not just online. I was introduced to the clinic by Karen Lord (Clinical Nurse Specialist) and I was seen by Liz Darlison, National Mesothelioma Nurse Consultant. It felt a little odd with me now as a “proper patient” rather than conference speaker, but also very reassuring to see a friendly face. Liz and her role has been so important to me over the past year.

The reason I had wanted to go to Leicester was to see Professor Dean Fennell, who leads on many of the mesothelioma clinical trials in the UK. We had an incredible quick fire conversation about current and up and coming trials, plus the basic science behind a few theories. I felt like a sponge taking in all this new information, but could only really remember it in layman’s terms in the end!!! We didn’t decide on a definitive treatment plan, but LOTS of options. Some options that I wasn’t aware of previously, so it was definitely the right thing to go.

One option I hadn’t previously considered was the “VIM” trial. This was what had been suggested for me by the Leicester MDT. Martin and I quickly “Googled it” and I realised that it was basically a placebo controlled trial of Vinorelbine vs active symptom control. The patient in me felt very strongly that I wasn’t interested in a trial where there was no option of getting an active drug at this stage of my treatment journey. I was worried by the speed at which my symptoms had returned and were progressing. I don’t want my kids to lose their mum sooner than they have to.

It is interesting to reflect on this gut reaction now, because on the journey home, my steadfast opinion started to waver, as the doctor in me started to talk…. Why not do the VIM trial? I wasn’t that unwell and I could probably manage a few months off treatment if I was randomised to active symptom control and not chemotherapy. I knew though, that further down the road, when options are running out, any clinical trial, placebo controlled or not, is a far better option than nothing. The doctor and researcher in me felt quite frustrated and embarrassed by the patient in me. I felt in quite an ethical conundrum. Having worked in HIV I knew that none of the advancements would have been made without people, patients, YOU! taking part in treatment trials. We simply would not be where we are today with HIV still incurable, but a manageable disease with normal life expectancy when diagnosed and treated early enough.

A good few weeks have passed since this appointment and it is interesting to look back on my assessment of the situation then. I realise in retrospect, that my knee jerk opinion of the VIM trial, was in fact flawed. Sometimes, active symptom control may give a better outcome than an “active drug” if the “active drug” doesn’t work, and gives side effects. We live and learn!!!! 

After considering the options suggested in Leicester, I concluded that I wanted to aim for a Phase II clinical trial. This is more about dosing and safety than how well a treatment works, and may carry more risk. But, it can occasionally offer greater benefit than routine care (although absolutely not guaranteed). When you are living with an incurable illness, I guess your attitude to risk changes.

Interestingly, I wasn’t up for much risk when initially diagnosed, including accepting the 1% risk of death with chemotherapy! On reflection, I think that is because I hadn’t accepted my illness and was in extreme denial. Now, I feel differently, but also want to take calculated risks with the possibility of maximum benefit (if that is indeed possible lol…..and I guess with that comes the possibility of more disappointment too..). There are lots of exciting trial options open already for mesothelioma, and more coming through. If you want to find out more about clinical trials for mesothelioma, then Mesothelioma UK has a very useful page just here http://www.mesothelioma.uk.com/information-and-support/clinical-trials/

So!!! The issue then was to stay well enough to enroll in a trial in 2018. Considering all discussions with Prof Fennell, I felt interested in oral chemotherapy with vinorelbine as a holding measure, hopefully keeping the meso at bay, and me well enough for a trial.

Which brings me to my love – hate relationship with Vinorelbine!

Vinorelbine is a vinca alkaloid chemotherapy, derived from the Madagascan Periwinkle. This appealed to the plant lover in me :). The little pink tablets just look so sweet and innocent, and admittedly, not having to have intravenous chemo or be on the chemo ward for 12 hours at a time is a HUGE BONUS.

This, however, lulled me in to a false sense of security. I kinda didn’t really feel as though I was taking chemotherapy, just pretending. But hey presto, the little periwinkles decided to make themselves known!

You take Vinorelbine on Day 1, Day 8, have a rest on Day 15 and so it becomes a 3 weekly cycle. The most common side effects are as with any chemotherapy, nausea/vomiting, diarrhoea, hair thinning, neutropaenia (low white cell/neutrophil count)…… I had none of these.

On the first cycle I had chills, and then a fever, 48 hours after the Day 1 dose. My rock of a friend Jacquie took me up to the assessment unit at 1030 pm. I was convinced it was a drug reaction as I was otherwise completely well. I had raised inflammatory markers in my blood, my white cell count was mildly raised but not neutropaenic, so thankfully I was allowed to leave the ward at 2am – it was little Freddie’s 7th birthday and I HAD to be there for breakfast!!

Following the fever I then got intense pain at the tumour sites which I could just about manage with the painkillers I had at home. Felt a bit flaky and slightly reticent about the second dose, but was reassured by a lovely registrar, and went on to have Dose 2.

I had by now read the Vinorelbine Summary of Product Characteristics in depth and realised that fever and increased tumour pain were possible side effects.

The fever happened again after Dose 2. 48-72h later, my temperature was 39.6!!!! Again, no other symptoms. Back up to the assessment unit, thankfully discharged later that day, told a viral infection, but I still remain convinced it was the Periwinkles at work.

Perhaps putting my theory off kilter slightly is that I had another fever a week later. Again no other symptoms, but this time I was admitted overnight…… Ew. No sleep that night at all. On that occasion I was discharged with antibiotics. I decided to take them, even if only to try to avoid another hospital admission.

On to cycle two!! No fevers so far!! But the intense tumour pain experienced previously appeared again on Day4 and was multiplied by x500. At least. Now, I do have quite a high pain threshold, and managed to give birth to my kids with “gas and air” only, but this pain was something else. I had maxed out on all the possible analgesia combinations I had at home, plus the additional Naproxen my GP had given me that day. It was 10pm and I was still in excruciating pain. Still, I decided to go to bed with a cushion wrapped round my chest, and remarkably actually got some sleep. How, I don’t know, but thank goodness. Over the next 2 days the pain subsided, so much so I was pain free off all analgesia, ready to take Dose 2!!!!!!! And yes, the fever recurred at the same cyclical time point following dose 2. Fascinating from a medical point of view, perhaps less so as a patient…

Initially I told myself that the fevers and pain were due to an inflammatory reaction at the tumour sites and this of course would mean that the Vinorelbine was working…. But, it was very difficult to work out where the side effects ended and cancer symptoms started. Over the past few weeks I became increasingly convinced of disease progression, as my cough was getting worse, and I was having more difficulty in maintaining my weight…. I also convinced myself that there was disease in my left lung as I was getting stabbing pains there….

So!!! Following a routine CT scan I was due to speak to Dr Snee this week. I had already convinced myself that he would ring and ask me to attend clinic instead because I sensed bad news.. and he did. As my granny always used to say “I could write these things”.

“Scanxiety” kicked in and by the time I got to the appointment, I had convinced myself that not only had I got disease progression and new disease in my left lung, I had disease in my abdomen and early SVCO*. So, when Dr Snee told me only of disease progression on the meso side, and nothing else, I kind of did a little dance!! So, not a great situation to be in, but not as bad as things perhaps could be.

*Superior Vena Cava Obstruction – this happens when the superior vena cava, a big blood vessel in the chest, is compressed by tumour or lymph nodes. As a result, the blood cannot flow back properly from the upper body to the heart and as a result you get symptoms such as swelling in the face, neck, arms, hands and veins on your chest. I had noted that I had slight swelling around my eyes, probably because I was bloody knackered, not because of SVCO lol….

So. Sadly, the Madagascan Periwinkle didn’t work it’s magic on me, but thankfully, oh thankfully, there are other treatment options and trials available. But that doesn’t stop the nearness of death feeling that little bit nearer. Fingers crossed I will still make it onto a clinical trial and a miracle will happen. There is still hope. Always hope!!! More info to come over the next few weeks as my treatment plan is decided upon….

Finally, I couldn’t let this blog go by without noting that is that it is now over a year since I was diagnosed with pleural mesothelioma. So I have surpassed the “One Year Survivor” mark. Not quite as gracefully as I would have hoped given that I have already completed two treatment cycles, but still something to be celebrated.

This blog is dedicated to all the doctors, nurses, health care support workers, housekeepers, radiographers, porters and other hospital staff I have met along the way. You have provided me with excellent compassionate care, lots of cups of tea, and it really makes a difference. You are all amazing. Thank you.

 

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?

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.