The language of cancer (remission does not mean cure)

So the recent outpouring of (very welcome) support in response to the news that my current treatment is working made me think about the language of cancer.  In total the post got 164 likes and over 70 comments.  Whilst the news was good I think many people misunderstood it, because I used the word remission.

The language of cancer is very familiar but until you are a patient, you don’t fully understand the meaning.  There has been a lot of debate recently around how unhelpful language can be.  You’ve heard it said many times that “she fought to the end” or “he lost his fight”.  None of this is helpful as it implies that the patient had a choice and simply didn’t try hard enough to beat the disease.  This is both depressing and offensive to those of us who experience the role of patient as essentially passive.  There is very little I can do to change or improve my current situation, I simply have to learn to be.  Recent preventative cancer campaigns such as CRUK’s obesity and cancer campaign add to the problem implying that our cancer may be our fault and fueling the blame culture.  Whilst lifestyle choices undoubtedly increase risk, fear doesn’t work as a mechanism to prevent behaviour.  If it did the tobacco industry would have folded long ago.

So back to the original reason for this blog post, the word “remission”.  We hear words and presume that we know their full meaning but often the reality is much more nuanced.  When I posted that I was back in remission I think some people took this to mean that I no longer had cancer.  This is not the case – it simply means that the tumours in my liver are not currently actively progressing and are responding to treatment and shrinking.  I have been told that I will never have a cancer-free scan and despite my recent good news average survival rates for secondary breast cancer are still 3-5 years.  To put this in context, whilst my news was good (probably as good as I could have hoped for) it wasn’t the miracle that meant I was cured.  This quote helps illustrate further:

Understanding the Difference Between Cure and Remission
Cure means that there are no traces of your cancer after treatment and the cancer will never come back.  Remission means that the signs and symptoms of your cancer are reduced.  Remission can be partial or complete. In a complete remission, all signs and symptoms of cancer have disappeared.
Source: https://www.cancer.gov/about-cancer/diagnosis-staging/prognosis

In my case is would probably have been more accurate to say “partial remission” as to many the word seems to imply that tumours can not be detected which will never be true in my case.  As my friend Rowena pointed out today there is also the social media effect where we see loads of positive responses to a friend’s news and simply click like and move on without thinking about it more deeply.  I’ve been guilty of this countless times and I’m sure I will be again.

In summary, my cancer is currently under control.  I’m on a chemotherapy tablet called capecitabine which I take twice daily.  I have 3 weekly blood tests to monitor my progress and will have a scan in July.  The side effects are largely tolerable and I can stay on it for as long as it continues to work which could be 2 months or 2 years.  After that, who knows?

In more frivolous news, 3 of the “12 things for 2018” challenge have now taken place.  So far I’ve had a fantastic night out at Burlesque with my lovely cycling club friends; completed Bramhall Parkrun with Karen, Carmel and Zoe and enjoyed very posh cocktails at the Washhouse in town and today, I volunteered at Lifeshare with Rowena and served up around 100 breakfasts to the city’s rough sleepers.  Next up it’s clay pigeon shooting where I suspect the 12 year-old in our party will be better than me!

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Happy new year (I hope)

I’ve put off updating my blog for a while as I just can’t seem to get the words down the way I want.  I’ll start with the bare facts of where I’m up to with treatment and take it from there.

My CT scan in July showed that everything was stable so I enjoyed another 3 months chemo-free but with visits to The Christie every 3 weeks for a Herceptin injection.  My three-month scan came round all to fast in November with the devastating news that the Herceptin and Tamoxifen combination were not working and my tumors had grown.  I’d been so optimistic about a prolonged period of stability and a chemo-free Christmas but it was not to be.  It seems that the HER2 marker that had been identified when I had surgery was, in fact, borderline meaning that the treatment had not been effective as hoped.  Back to square 1.  A number of options were discussed but I think I knew from the outset that there would only be one real option – IV chemotherapy.

This time it’s a drug called Carboplatin – most commonly used for lung and ovarian cancers.  Bye-bye chemo-free Christmas and cue tears and tantrums.  It is so difficult deciding to endure the complex and sometimes debilitating side-effects of treatment for a disease that will ultimately kill me, no matter what.  Two rounds in and it seems that the worst physical side-effect of this chemo for me is a week of stomach pain and related issues.  Much worse however is the 2-3 day brain-fog that descends and renders me incompetent from all but the most basic of tasks.  I am half way through now though with treatments on 10th and 31st January followed by the usual pre-scan terror.  Fingers crossed it’s doing its job and the pain and discomfort is worth it.  One (tiny) bonus is that this one doesn’t cause hair loss.

So, in an attempt to prove that I’m living with cancer rather than being a victim to it, here are some of the highlights of the last six months.  I’ve also updated my full-year of a positive every day which initially felt like a chore but is fantastic to look back on and is definitely something I’ll be repeating.

July brought a new cat into our house – welcome Marlow and thanks to Millstream Animal Shelter.  I also had a great day out supporting my friend Rowena to complete Bolton Ironman.  I finally had my bee tattoo cover-up by the fabulous Saskia at Sacred Art….. and decided to get my scalp tattooed at the same time to reduce the stress related with chemo hair loss.  I’m delighted with both!  I completed Salford 10k with Billie and virtually no training, not my fasted time ever but we had a ball.  Mike and I finally made it down to Cornwall and the Eden Project, a trip that has been postponed several times.  I was well enough to attend my cycle club’s Annual Ride and Social Event in Lancashire and completed the first ever ARSE Parkrun / cycle combo.  Finally, in November, we managed a family holiday with my sister Jess to Robin Hood’s bay.  Oh – and I’ve got hair again, it’s curly, unmanageable and a bit nuts but it’s hair all the same!

Throughout 2018 I not only managed to stay in full-time work but actually took a twelve-month sabbatical from the Open University and worked for Macmillan evaluating a programme of cancer improvement projects in Manchester.  This has resulted in many new friendships as well as a sense of satisfaction at being involved in something so important.  Hopefully I will return to the OU in February once this lot of chemo is done.

My biggest achievement however, which I share with all our trustees, riders and volunteers, is the launch in January 2017 of Pegasus Riding for the Disabled.  It’s great to be involved with RDA again after a long break and I love both my governance role and the opportunity to volunteer as a coach every week and see the joy that ponies can bring to people with disabilities.

So what’s on the horizon for 2018?  I’ve entered Loch Ness sportive in April so need to concentrate on recovering my somewhat depleted cycle fitness.  I’ve challenged 12 groups of friends to provide me with a new experience every month.  Only 3 rules, it has to be something I’ve never done before, those nominated have to do it with me and finally – I pay my own way.  Knowing my friends and family this could throw up some entertaining, challenging and potentially dangerous and / or illegal activities.  Bring it on!

Above all, in 2018 I’m hoping for a treatment that works and holds me in remission for as long as possible with a good quality of life.  Happy new year to you all x

It’s been a mixed bag…..

Preface: I wrote this on a train to Harrogate on Wednesday night and have left it largely unedited.

My car is in the garage overnight so of course my sister goes into labour.  A mad dash to catch the last train to Harrogate cursing the bad timing and the mechanic who convinced me they needed it for another 24 hours.  The train from Leeds is SO busy.  I’d love to know where everyone is going at this time of night.  A few hours earlier I was cleaning out the chickens and mowing the lawn.  I’ve not looked in the mirror since then but am sure I probably look a state!

I made it to Mallorca but it was a pretty miserable experience as the combined effects of chemo and a brutal chest infection finally got the better of me.   Neither my fabulous team-mates or my hired Pinnarello managed to lift my spirits.  Apart from one amazing day cycling to Lluc I was too ill to do very much and spent much of the time feeling sorry for myself in a slightly pathetic way.   At times like this it’s hard to cancel out the voice in my head questioning if I’ll still be here to make this trip next year.  It’s made me reflect on the overwhelming sense of loss I feel and the sense that I’m grieving for my former, pre-cancer self.  My cancer is boring.  I cancel stuff, treatment is dull, talking about it is dull, hearing about it is dull so to all my friends and family who offer continual support, I’m sorry.

Post Mallorca, chemo and chest infection, I started to prepare for the Great Manchester Run but was alarmed to discover that I could only run about 1K without stopping.  This was frustrating but as my chest infection cleared up and I moved on from this bout of chemo I recovered quickly and got back up to 5k…. still way off the 10k mark though.  A few weeks before Deena Campbell from North West Tonight came out to interview me about exercise and cancer and why I was taking part.  The highlight of this was getting my chicken Warren onto the film and forever immortalised in the BBC Archives.  If anyone wants to see the chicken, she’s here:

On the Sunday before the run a camera-man came out to film me teaching RDA as part of the “runner stories” to be broadcast on the day.  This was a pretty daunting experience but I quickly forgot he was there due in part to his skill and in part to the RDA kids being as fantastic as ever.  Monday 22nd I woke early and unable to sleep decided to go to the pool.  It was on the drive there that I first heard the devastating news about the bomb in the centre of town.  I don’t really have words for the horror that unfolded over the rest of that day and the following week apart from to say that the spirit of the city and its people shone through regardless.  Suddenly the schedule interview I had on Tuesday took a much more sombre turn and the run itself was in doubt.

In the end the run did go ahead as planned and against the odds I managed to complete it without walking.  It was a fantastic, moving day and a tribute to all those who lost their lives the week before as well as a show of defiance in the face of such appalling actions.  My friends Kat and Rowena were interviewed at the end of the run and amongst all the positive comments managed to get in my curtain making skills.  Thanks Kat!

Earlier in the year I cancelled my place on the Coasts and Castles cycle tour.  When it became clear that I’d still be on a chemo break I re-joined and I’m so glad I did.  8 of us did 210 miles over 4 days which sounds quite leisurely but the constant headwind and my lack of bike fitness meant it proved super hard.  On day 2 I was ready to throw in the towel but after teary conversations with Jess and Mike I got back on the bike and stayed the course, thanks to the fabulous Glow girls who gave me the encouragement and support I needed too.  On the final day we were rewarded with possibly the most beautiful, sublime descent I’ve ever done in stunning weather with breath-taking scenery.  For the cyclists among you, take NCN route 1 from Innerleithen, climb for about 15 miles then weeeeeeeeeeeee.  It’s only in times like that that I’m truly able to live in the moment and forget all the rubbish.

Anyway – my next scan is 17th July and I’m anticipating and dreading more chemotherapy.  I’ve kind of got used to being bald and it’s strange currently having hair again.  My latest way of taking control of all of this is to book myself in for a scalp tattoo.  The plan is that between blocks of chemo I can have this tattoo extended and start not to dread the inevitable hair-loss so much.  I mostly choose not to wear wigs or hats so this feels like a good way to embrace it although I’m somewhat scared about the pain.  It can’t be as bad as a liver biopsy though, right?  Anyway, pictures to follow in my next blog.

Postscript:  baby Liliana was born on Thursday morning and is healthy and beautiful.  My sister is amazing and was well enough to leave the hospital 6 hours later.  Yesterday I had half of my first tattoo on my shoulder done and I love it – even though it isn’t finished.  Today I’ve been to the local animal shelter and adopted a new cat.  Life really does have a way of marching on regardless.  Here’s to a stable scan and 3 more chemo-free months.

 

Positivity on my Cancerversary

It’s a year to the day since I found my lump and I’m trying to focus on the positives, not least that I’m still here.  Highlights have included amazing support from friends and family at Nantwich triathlon, cycling the final day of the Way of the Roses, Salford triathlon, my sister’s hen do and wedding, beekeeping, ridiculous hens, my 100th Parkrun, ARSE, my birthday weekend away, winning the Glow Christmas fancy dress competition, my lovely niece Amelia, trampolining, changing jobs, the Great Run press launch and starting our fantastic new RDA Group.  I can’t however ignore the fact that it’s also a year in which I’ve had 8 scans, 62 medical appointments, 2 general anaesthetics, 3 surgical procedures, 2 biopsies, 15 sessions of radiotherapy, an ECG, 20+ self-administered injections and many weeks of chemotherapy.  Not bad going for someone who previously averaged 1 medical intervention a year and was verging on hospital-phobic.

So where am I at with treatment?  After my first chemo of this block it quickly became apparent that my veins were not going to withstand repeated cannulas so I was approved to have an implantable port fitted.  This is a little device inserted under the skin on the chest with a tube going into a vein through which all bloods can be taken and all medicines administered.  Anything that removes the need for the dreaded cannula is a bonus.  If you are interested in finding out more Macmillan, as ever, have the answer here. 

Having the port fitted wasn’t the loveliest of procedures but I had waking sedation which helped considerably, as did the fantastic and good humoured surgical team who did the job.  I was amazed to learn that despite being freshly stitched the port would be used for the first time for chemo the day after it had been fitted.  The idea of a port horrified me when I first discovered that there was such a thing but I feel very differently now.  It looks and feels a bit alien however a lot of the pre-chemo anxiety that I’d previously suffered from has now disappeared.  I go and get my blood test on a Wednesday morning and the line that is inserted in my port is then left in to be re-used at chemo several hours later.  One needle that takes seconds to do and rarely, if ever goes wrong.

So, onwards with chemo.  Each cycle lasts 21 days with the two chemo drugs Paclitaxel and Gemcitabine administered on days 1 and 8 and a Herceptin injection also given on day 1.  This effectively means that I get 2 weeks on and one week off treatment.  As with my previous chemo the first few sessions were ok although I very quickly started to lose my hair again which not all women do on this combo.  Frustratingly it had just grown back to a good, very curly, length and I confess to finding it much harder to deal with the second-time round.  This was made considerably worse as it thinned and turned into a very distressing curly, old-fashioned “style” that I described to one friend as a faded Maggie Thatcher.  At this point it had to go – with immediate effect.  This was made very clear when I was having a meeting with my new line-manager and noticed to my total embarrassment that several of said shedding hairs were floating on the top of her cappuccino.   I couldn’t bear to wait until my hairdresser could see me so instead, I visited the local Black Sheep Barbers who did a fantastic job of sorting it out and then, very kindly, refused to charge me.  Thanks guys – stuff like that really does make all the difference.

So how am I feeling?  I’ve now had 3 cycles of chemo and have one more to go before I get a break for scans and hopefully am declared well enough to go to Mallorca on my cycle club holiday.  However, I’ve had several weeks where my white cell neutrophil count has been very low making me much more prone to infection so this might impact on my ability to travel.  In addition, this chemo has left me very fatigued which has been both frustrating and depressing.  I’ve had to cancel many social plans and in recent weeks have frequently been in bed by 8.30pm.

My fitness has suffered considerably and I have regular nose bleeds, stomach aches and other small but irritating symptoms.  However, I’m still swimming and cycling regularly and am staggering my way round Parkrun on a weekly basis which has led to me, somewhat foolishly, entering the Great Manchester Run for the fifth time.  This has been prompted by the need to earn some urgent funds for our new RDA group via run sponsorship.  As a result, and thanks to my friend Rowena, I got invited to the press launch of the run.  I was hoping to promote our RDA group and did get my 2 minutes of TV fame (link below) however they focussed on my illness and not the charity.  All is not lost though as I’ve got a couple of leads to follow up which may help.  All in all, it was a very entertaining event and I felt privileged to be there.  The TV clip can be viewed here.

My only new year’s resolution was to jot down one positive thing each day so that even those times when everything seems too awful to contemplate are punctuated with light.  I started typing up the first 3 months yesterday and realised what a great thing this has been to do.  Just reading through it and remembering things made me smile so I’ve included it below.  Do have a read, you may even feature!

So I’m raising my Friday night glass of Prosecco to dreams of Mallorca and fantastic scan results later in the month.  Fingers crossed for both.

Positives1

Hair today, gone tomorrow

On Wednesday I sat in the chemo chair waiting for the next round to start with great feelings of trepidation.  What side-effects will these drugs bring me?  Will I still be able to work, function and have a life?  Will my veins stand up to repeated cannulas?  Will I be bald again?  Will it work? How did this become my life?   There are also all the things I’ve had to cancel now that chemo is looming again.  A long-awaited tattoo appointment, the dentist (not so sorry about this one), the hairdresser, a cycle trip and some holiday plans.  This cancer shit is exhausting.

The highlight of the day was being told that the scan I had on Monday showed that there had been no development in my disease since my last lot of chemo finished back in early October.  I’d been having a few twinges and it’s very hard not to panic and presume that everything is a symptom of disease progression so I guess I can relax a bit now.

Chemo day itself was super hard.  I arrived at 9.30am and after several failed attempts to take blood and insert a cannula I got approval to have a port fitted (more about this below).   Finally, treatment started around 2pm, after a lengthy delay getting bloods back from the lab. First up was an injection of Herceptin into my thigh followed by a Gemcitabine infusion prior to being given a massive dose of Piriton to counteract the irritant effects of the final chemo drug Paclitaxel.  What nobody had warned me was that this would make me feel instantly drowsy and drunk and this feeling remained for some considerable time.  As a result, I won’t be driving to future appointments and it would have been very helpful to have been warned about this in advance!  I eventually got back home at 7.30pm and was in bed by 8 feeling somewhat battered.  Thanks to Helen C for keeping me company in the chair – I look forward to my first crochet lesson, after all I’m going to need a new hat!

One of the chemo drugs, Paclitaxel, frequently causes peripheral neuropathy so as a result I have to wear ice-cold slippers and mittens throughout the hour-long infusion to reduce the severity of this.  Not only is this very uncomfortable (think of the coldest bike ride you’ve ever been on) but it also means you can’t do anything very much.  I did manage to turn the pages of my Kindle but that was about it so audio-books will be the way forward if I don’t have a chemo-buddy.

Having finally grown my hair back to an acceptable level I’m a bit upset at the prospect of losing it all again so I thought I’d give the cold-cap a go. This is not a sexy look as the photo below will attest!  The cold cap is an extension of the cold hands and feet, the idea being that by freezing the head you can reduce the effects of chemotherapy on the hair follicles.  The first 15 minutes were pretty unpleasant but after that it was fine and the most irritating thing was actually the chin strap.  I wasn’t so impressed with the fact that my head was slathered with conditioner before putting the cap on but at the end of treatment there was nowhere to rinse it off so I had to walk out of the hospital like that!  In order for the cold cap to work it has to be worn for half an hour before treatment begins and an hour afterwards and I’ve decided that I’m just not prepared to spend any extra time in the hospital so I guess I’ve got to cope with being bald again.  It was fine the first time round but I’m sad about it this time.

So back to the aforementioned port.  This a semi-permanent valve inserted under the skin on the chest with a tube connecting to a vein near the heart.  Once fitted, all bloods can be taken through it and all meds administered.  It sounds super-grim but all the people I’ve spoken to who’ve got one say it’s the best solution and to just go for it.  At my very first chemo back in June I remember meeting a woman who had one and feeling pretty horrified at the whole concept.  I don’t feel like that anymore as lot of my chemo anxiety is around repeated attempts to get a cannula in so any solution to this would be welcomed.  One of the lovely chemo nurses commented that she felt sad when she saw my name on the board knowing she’d have to put me through this again.  Because my veins are shot as a result of the previous chemo and I can no longer have any needles in my right arm due to lymph-node clearance I don’t really have much choice.  Hopefully this appointment will come through soon!

There is some good stuff though.  Our new RDA group launched on Sunday and I taught my first riding lesson in 18 months.  I also I’ve started a new job and have been told that I should be able to go to Majorca in April (hooray).  It’s currently 3 days after my first chemo and I’m heading off to the pool for a quick 40 lengths having failed to cycle this morning due to torrential rain.  I’m so grateful that I’m able to still do this so here’s hoping that the chemo side-effects are manageable and life is not on pause.

cold-cap

Happy new year (I hope)!

This time last year I had no idea what 2016 had in store for me and how radically my life was about to change.  I had a great new year and for that I am grateful.  This year the party didn’t even get started thanks to Mike’s chest infection and my sense of impending doom of what the start of 2017 contains.  So as it stands, I’m mid-way through radiotherapy with the next stage of my treatment now mapped out.  It’s a bit of a dry and more technical blog this time round as I’m finding it hard to put my actual emotions about all this down on paper in a coherent way.

 I’ve had lots of friends ask me what radiotherapy is and how it differs from chemotherapy so here’s a quick potted guide.  Chemotherapy is a systemic treatment utilising a combination of drugs administered by IV or in some cases tablets.  The drugs kill cells that are in the process of splitting and mutating, unfortunately it also takes out healthy cells too which contributes significantly to the unpleasant side-effects.  Radiotherapy delivers high-energy rays to a localised area of the body and is like being in a big x-ray machine.  I am having radiotherapy to the breast and clavicle to make sure that no bad cells are remaining in that area after my surgery to remove the primary tumour.  There is a photo below of me in the radiotherapy machine that I spent some considerable time debating whether to include or not.  In the end I went with the honest version of what treatment really looks like rather than the more modest but less representative covered up version so look away if you are easily offended!

 The radiotherapy process starts with a planning meeting where you are positioned on the scanner and a lot of very precise measurements are taken so that the exact same position can be achieved on every treatment.  Then you are given 3 tiny spot tattoos which act as a guide for all subsequent treatments.  These are done by what I can only describe as a punch and certainly not a sophisticated tattoo needle!  The end result was me wandering round Aldi wondering why I was getting odd looks until I realised that I had a thin line of blood trickling down my chest.  Nice.

Radiotherapy is then administered daily, in my case for 15 sessions – I do get weekends off to recover a bit though.  Probable side-effect are reddening of the skin, sore throats and fatigue although as yet I don’t seem to be suffering too badly.  I’m only just over half way though.  Each session starts with the radiotherapy team positioning me precisely on the scanner and drawing lots of pen marks on my skin to get the machine lined up.  The actual treatment takes about 2 minutes and the whole process takes about 15 minutes.

In addition to radiotherapy I also got called to see my oncologist last week – something I didn’t expect to happen until after radiotherapy had finished.  My previous biopsies of liver and breast had shown my cancer to be oestrogen receptive or ER+.  It turns out that the biopsy of the lymph nodes I’d had removed show that it is also HER2+ (human epidermal growth factor) basically a protein that can affect the growth of cancer cells.  Around 20-25% of breast cancers are HER2+ and they are generally more aggressive than other types which explains to some degree why mine has advanced so fast.  Obviously this is bad news however HER2+ cancers do respond particularly well to chemotherapy….. but a different type to the one I had previously.  By now, you might be able to guess where this is going. 

 I have to start a new round of chemofuckingtherapy from 25th January for a minimum of 3 months but possibly as many as 6.  The drugs are Herceptin, paclitaxel, and gemcitabine and are administered weekly by IV.  My initial reaction was total devastation.  The thought of being back on chemo with all its side effects makes me want to weep.  Also, I like having my hair back and don’t want to lose it again.  Also, I just want my life back, to go out to work and live a life not dictated by the next hospital appointment.  When I expressed this to my oncologist he did his best to reassure me that the HER2 discovery is actually good news and the new chemo may well achieve a better remission for my liver and an improved prognosis so it’s time to suck it up and continue focusing on the future.

 One of the ways disease is measured is via tumour markers obtained from blood tests.  I was aware of this and had heard other women discussing their markers in my support group but I’ve only just started to pay attention.  I haven’t yet investigated exactly what the numbers mean but at first diagnosis my tumour marker was 129 and in October just prior to my first surgery it was down to 28.  I guess now the trick is not to obsess about these numbers every time I have bloods taken!

 With the outgoing year I wish to acknowledge all the clinicians, technicians, radiographers, nurses and other medical staff that have been involved in my treatment over the past year.  Throughout this shit-storm I have been treated with kindness, caring and respect by everyone I have met for which I am very grateful.  Thanks also to all my friends and family for your incredible ongoing support.  2017 isn’t looking like it’s going to be any easier than 2016 but hopefully by the middle of the year I’ll have a good remission and be relatively treatment free for a while.  Through it all I still hope to be on my bike, working and teaching Riding for the Disabled again when our new group (Pegasus RDA) launches in February.  So 2017, here’s to new adventures and the best possible remission that drugs can give me (please).

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One step forward, two steps back

A few week ago I attended my first support group for people with secondary cancer.  It’s hard to explain what it’s like to walk into a room of women that you have never met and know that each and every one of them totally get what you are going through.  I may dedicate a whole blog to this subject in future as I learnt so much, not just about other people’s stories but also about how varied clinicians can be and how lucky I am to be being treated at The Christie.

A week after surgery I returned for a check-up only to be told that the lab reports showed that the lumpectomy did not achieve a sufficiently clear margin and I needed a second operation. Whilst this was obviously disheartening news I was pleased to learn that it only affected the breast and not the armpit where all my pain is focussed.

After this news I saw the physio and was given some gentle exercises to help mobilise the shoulder and arm where the lymph nodes were removed.  As predicted I managed this for about 2 days before getting frustrated with progress and deciding I was sufficiently healed to rake leaves in the garden.  By way of perspective, my physio had set me a goal of being able to do a little light hoovering and a gentle 5 mile cycle by Christmas so yes, I’m an idiot.  10 minutes in I realised that this was a REALLY bad idea, pain levels had rocketed etc. so I stopped but the chickens still needed cleaning out……

Suffice to say that the subsequent pain levels well and truly taught me a lesson.  I went to visit a friend for coffee and she had to drive me home as even walking was agony.  I like to think that I won’t repeat this but honestly, I don’t think I can promise.  Anyone fancy joining me for a quick swim-bike-run?

Just before the second operation the anaesthetist came to see me as is standard.  I made a comment about being aware of talking rubbish when I came round to which he replied that I was “very jolly”.  I took this to mean that I said something completely inane and amusing.  This feeling was further compounded when he came to see me AFTER the second surgery.  I’m sure anaesthetists don’t usually do this so I’ve got a horrible feeling I’ll be turning up in a book of anonymised amusing surgical stories sometime soon.

As I was hoping the second op didn’t set me back much.  I went to a gig on Saturday night and had to stand at the back rather than dancing like a loon but I was just grateful that I was able to continue pretty much as normal.    The physio had given me the go-ahead to return to Pilates so I did a 1-1 session with the fabulous Jo Murphy and it felt so good to move again and start properly mobilising the shoulder.

The second surgery has delayed the start of radiotherapy by 2 weeks which is a little frustrating as it will now happen over Christmas and new year.  I had 27 lymph nodes removed in total (full auxiliary clearance) of which six tested positive for cancerous cells. This means that as well as having radiotherapy to the breast I will also have it to the lower neck area.   I include the diagram below as it explains my operation and why have pains all around my shoulder area and down into my arm.  Whilst I have a smallish 10cm incision in my armpit, nodes were removed from this right up into my neck.

So what next?  The joy of cording (where redundant lymphatic tissue dries out and has to be popped to break it), the possibility of lymphedema (swelling of the arm), loss of sensation around the surgery site and beyond that may or may not be permanent, changes to my breast and a life of having to be vigilant around infection, sunburn and cuts in my right arm.  On top of chemotherapy my body is already irrevocably changed and although all this is currently very manageable it does make me sad.

On the up-side though, I’ve been selected to be a mentor in a feasibility study pairing people in my situation with those newly diagnosed with advanced cancer to see what impact this may have on patient pathways.  I’m allowed back into the pool next week (gently) and am already back on my bike – all be it for short rides.  I’ve got my first hair appointment in 8 months just before Christmas and I’m hoping that radiotherapy won’t be too awful.  Also, for the first time in ages I don’t have a single medical appointment next week (physio doesn’t count) and that is definitely worth celebrating!

lymph-node-diagram