Post Op Surgical Review

Boob Job

I can hardly believe it has been eight weeks since my last surgery.  But it has.  Eight whole weeks.  It seems a lot longer because I am so well and have recovered so much faster than I have done from any other surgical procedure I have ever had.  Getting to grips with my dressing problems no doubt helped but I think knowing that this was the last big thing to happen was a major psychological boost.  Having had a total of 1.450kg removed from my chest has probably helped too (1kg at mastectomy, 450g at reduction).

Anyway, today I got to see Surgical Spice for what may be the last time.  But more of that later.  Given that we are no longer land based, it involved a boat trip back to central Birmingham and then for the first time ever I walked to my appointment.  This was actually rather fun thanks to brilliant sunshine.  My Foob (fake boob) is looking excellent.  It has healed well and no longer twitches quite so alarmingly.  It still has the potential for a bit of tit twitching but it is not something I am practising and Surgical Spice is not keen to re-operate on that bit.  Which is good as I am less than keen to subject myself to yet more surgery unless absolutely necessary.  My Much Reduced But Still Real Boob is also healing well, although the scars are not what they should be yet.  I have been instructed to be more vigorous in massaging both the scars and the breast in general as there appears to be some fat necrosis internally.  This is not as alarming as it sounds and will settle down.  The symmetry is excellent and all things considered everything looks very good.  My histology results were also fine and given that I had totally forgotten about them were clearly something I was not worrying about.

The next stage is for nipple reconstruction and this is where things got a little complicated.  My hospital is going through some major reorganisation and my lovely consultant will no longer be working there from June.  This is a sad loss for the hospital and the service as the skills she brings will no longer be available to this NHS Trust.  She is the only surgeon able to perform certain procedures like the DIEP flap reconstruction which was my reason for being referred there in the first place.  I will not be recovered sufficiently for my new nipple to be formed before she leaves which leaves me with two options.  One, have whoever replaces her at my treating hospital; or two, aim for the NHS Choose & Book service which may allow me to continue to be seen by her even though she will no longer be working within the NHS.  I am inclined to continue under her care if possible given that she knows my history and I am so nearly through my treatment so will aim for that option.  Once this is done, I get to explore the world of tattoos!

Once again, this appointment was rounded off with a trip to the medical imaging department as topless photos are now a standard part of my visits.  I would quite like a complete set to see the changes but suspect this is not possible!

Militancy Matters

ink-pot

It is official.  I am much improved.  The lack of 5FU in my last cocktail has definitely seem more spring in my step, more boing in my bounce, more spark in my  plugs.  I have been suspecting things were a bit better for a couple of days but today it sort of burst out of me.  You see, I came over all militant.  That in itself is not unusual.  But today I have taken action!  Number of MPs written to?  One.  Number of hospital Chief Execs?  Two.

I have been driven from soapboxing to taking action by the Secondary, Not Second Rate Campaign run by Breast Cancer Care.  They published a report in July having surveyed nearly 1000 people and having it read it, two things struck me today.  First, 58% of those like me, diagnosed with primary breast cancer, did not know what signs and symptoms could indicate Secondary Breast Cancer, 20% thought they did but were actually wrong and only 22% knew what to look for.  This is truly shocking.  But given that 60% of hospitals are not discussing this possibility with their Primary Breast Cancer patients it is not surprising.  But it is easily remedied.  A final conversation with the Breast Care Nurses at the end of treatment, with clear information and points of access laid out for further treatment, would be all that was required.

Of course, to plan for future treatments, it is necessary to know the scale of the problem and therein lies the real issue.  Since 2013 it has been mandatory for hospitals to record data on Secondary Breast Cancer.  They have to record the numbers diagnosed and whether they previously had Primary Breast Cancer or not.  But the vast majority of hospitals in England are not doing this.  Breast Cancer Care are now naming and shaming the hospitals they know of so do look up your local: https://www.breastcancercare.org.uk/secondary  (2/3rds of the way down the page).  This information is crucial.  After all, how can you plan for a service if you do not know how many users there will be?  How can you assess the efficacy of a treatment if you do not know how many go on to develop further problems?  Of course you can not.  What happens is that disaster ensues.  And that is how the state of Secondary Breast Cancer care is at the moment.  And it is unacceptable.  This report made me angry.  Very angry.  It made me sign up to volunteer for the Secondary Not Second Rate campaign.  It made me want to educate all I know on what signs of Secondary Breast Cancer to look out for.  It made me bang on to a lot of my friends about the injustice of the situation.

But what really tipped me over the edge, what really made me incandescent, was this little film.  Take a look and let’s see if the same statistic gets you:

We are about to hit Breast Cancer Awareness month.  Pink is going to consume us.  I hate the pinkification of breast cancer.  I have said it before.  I will no doubt say it again.  But I can almost (only almost) cope with its retinal burning luminosity by consoling myself with the thought that money will be raised.  Somewhat naively, I assumed that all breast cancers gets an equal share of this.  Didn’t you?  They do not.  The tsunami of pink that engulfs us is almost entirely taken up with money for primary breast cancer.  Less than 5% goes towards Secondary Breast Cancer.  Less than 5%.

It was this that kicked me into action.  I cannot standby and allow this situation to go unchallenged.

Hearing the Fat Lady Sing!

last-chemo

That is it.  Barring disasters, I.  Am.  Done.  Unfortunately, unlike the woman in the picture I am not celebrating with champagne.  Rather I am reclining on my couch.  Think Victorian lady with the vapours.  And a fuzzy head.  Both inside and out.  I am not sure the Victorians went in for fuzzy heads much but it could have been a thing.  Work with me.

My chemo unit were lovely.  They adored their gift and three members of staff came to discuss with me how they could improve their introductions.  They had no idea they were not doing this and all thought they were.  I discovered the hospital’s Chief Exec is also a big fan of the #hellomynameis campaign so hopefully I have pushed an open door.  I was seriously impressed that they wanted to talk about my experience.  And the jam definitely went down well.

The administration of this my final (did I mention that?  It was my LAST one.  I would not want you to miss that point) dose was a little tricky.  My veins really were at the end of themselves.  It took much stabbing and the unit vein expert was wheeled in to finally find one that would co-operate.  This one worked but was sluggish.  But we got there.  It is done.  Four and half hours later and we left for the last time.  I got hugs from the staff which was nice.  But what I really wanted were party poppers, fireworks, celebratory cakes, corks popping, ticker tape parades, balloons, a marching band, trumpet fanfares and humongous great bell for me to ring.  And hugs.  Not much to ask is it?! I shall blame NHS cutbacks for their absence.  Yet another reason to despise Jeremy Hunt.

One of my lovely friends works in a hospital where there is a bell in the chemo unit.  In this magical place, at the end of treatment patients get to ring it.  She said I could come and ring her bell.  But I think I am a little old.  It is a children’s hospital.  However, I think there should be a bell.  A big hum-dinger of a bell.  A huge enormous great bloody big bell.  And if I had a bell, I would let you all ring it too.  So you just know what I have been humming all day, don’t you?  Yep, that doyen of a tidy hospital, Anita Ward and her classic: You Can Ring My Bell

Not nearly cool as fellow blogger Sue Pook’s re-writing of The Stranglers’ No More Heroes with the words ‘No more chemo anymore’ but you have got to love a bit of disco.  So from here on Things Can Only Get Better.  Bear with me as it is going to take some time to return to what passes for normal around here.  Several months it would appear *Boo, Hiss* but I will get there in the end.  Hurrah!  Thank you for all your support.  It would have been unimaginably hard without you.

Say thank you nicely

thank-you-hospital

I have spent much of the time between my previous bout of poisoning and this next and final one making up a thank you gift for all those working on the chemo unit.  Because I make jam for a living, a gift of jam was always the obvious choice but I wanted to somehow convey the importance of individual introductions without seeming to complain.  I do not have a problem pointing out when something is not being done correctly but I know how fragile morale is in the NHS and these people are amazing.  They work incredibly hard in less than ideal circumstances so the last thing I want to do is demoralise them further.  I want to encourage and build up.  But I also want to explain what a difference knowing the name of your nurse makes.

After much brain racking, I hit upon the idea of individual pots of jam with named labels.  I got a list of all the staff from the unit and made up labels accordingly, each one including the #hellomynameis downloadable graphics from Kate Grainger’s website I also included a condensed version of the following quote that sums up the whole thing to me – it is about connecting:

‘Introductions are about making a human connection between one human being who is suffering and vulnerable, and another human being who wishes to help.’

Dr Kate Grainger

I then made a thank you card and wrote thanking the staff for everything:

Thank you so much for all the care you have given me while delivering my chemotherapy. It has not been the best experience of my life but I have appreciated knowing that I could rely on you all to make the whole process as bearable as possible. We’ve even shared a few laughs along the way. I wanted to particularly thank those of you who took the time to introduce yourselves to me by name. As a former nurse and midwife, I know how easy it is to overlook this but as a patient I can’t begin to explain the difference it makes. I am sure you are aware of the late Dr Kate Grainger and her #hellomynameis campaign. Her experiences resonate very much with mine and I wanted to give you a thank you gift that would let you all know just how much those introductions meant to me. You are all important to me so I wanted to thank each of you by name.

Having left the NHS (God bless it!) behind me, I now work for myself and have a small (but perfectly formed!) preserve company making jam, marmalade and chutney. This year has been a bit of a disaster workwise but I thought you might enjoy the little pots my husband and I have made for you. There is one for each of you by name and should be enough for two more each if you rummage through the box. Alternatively please share them with whoever you think would appreciate them. And please, if the named ones are not to your taste, do swap them! I would hate to think someone is lumbered with chutney when really they’d prefer marmalade.

Finally, thank you once again. You are a fantastic team doing an extraordinary job under tremendous pressure. I sincerely hope I will not have to be back with you again but if I do return, I know I will be in very capable hands.

With this I enclosed some #hellomynameis literature to explain and make sense of the campaign in case it was unfamiliar to them.  I hope that I have made my point in such a way that they will feel encouraged to introduce themselves in future.

Time will tell but I guess it will not tell it to me as I am unlikely to receive objective feedback from them.  Whatever happens, I hope they enjoy the jam.  And the marmalade.  And the chutney.

Inhabiting the Grey

dear-grey-area-why-do-you-have-to-make-everything-so-messingly-complicated-sincerely-fan-of-black-or-white

I have spent a lot of time in grey areas of late.  Which is more than a little annoying.  I am normally good at making my mind up.  I am decisive.  Definite.  Prone to jump to conclusions, even.  I do not do shilly shallying.  I am deeply impatient with those who cannot make up their minds.  I hate indecision.  I despise wishy washy.

So it is ridiculously ironic that I am being visited by a cancer than simply refuses to make up its mind about how it should be treated.  First it was multifocal.  Then it wasn’t.  Next it was a 52mm tumour.  Then it shrank to 15mm.  At one point I needed a mastectomy.  Now it seems I did not.  My first pathology suggested chemo, the following one was less sure, and the lack of lymph node involvement implied no chemo at all.  And now, the oncotype dx test, which was supposed to shed light on what happens next, has provided us with as much clarity as your average puddle.  How naïve it now seems to think that I thought I would have a diagnosis and treatment plan back in February.

Brainy Spice rang me this afternoon.  This impressed the heck out of me.  Just to remind you, today was a day the Junior Doctors were striking (Note to self: check clinic dates against strikes and take muffins for picket line).  This woman will have been run off her feet because she will have been covering for her junior colleagues.  Under no circumstances can phoning me have been said to be urgent.  I was not expecting to be called until tomorrow at the earliest; it was not life threatening; and it could all have been put aside for a later date.  And I would have completely understood and supported her if that had been her decision.  However, like every doctor I have so far encountered at this hospital, she went beyond what was necessary and did everything she could to the best of her ability.  We are so lucky to have such an amazing NHS, I sincerely hope we still have one in future years.

Anyway, that was a digression.  I will park that high horse and get back to my results.  My Recurrence Score has come back as 28 out of 100.  Sounds good at first, doesn’t it?  However, less than 18 means that chemo is definitely not required.  Higher than 30 means it definitely is.  Scores in between are less clear.  Generally, if score in this intermediate group, chemo is not considered helpful as it makes little, if any, difference.  Of course, just to be awkward, my score inhabits the top end of that range which makes is even less clear about the chemo option.  Fuck.  Sorry.  Slipped out.

On the upside, I have been referred to THE most amazing oncologist.  Possibly in the world.  I have known him for about twenty years and loved him for much of that time.  He is a tremendous man of God who played a part in my son’s life during many difficult years.  As he has always been known in our household quite simply as The Doc, that is how I shall refer to him.  So the next stage is an appointment with The Doc, hopefully next Wednesday.  I trust him implicitly but really hope he can give us some guidance.