Category Archives: My health

Text to a friend

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Whilst away at the European Sarcoma Conference I knew something wasn’t right.  I think I knew that Tish would be protecting me whilst I was overseas.  She fully supported my being involved in conferences, boards, cancer networks etc so wouldn’t want to burden me whilst I was abroad.  But I’ve had this dreadful feeling all day.  Below is a (long) text message I sent to a friend:

“I need to run something by you. I don’t know that you’ll understand nor that I’ll be able to tell you all I need to say but I need to know I’ve tried and need to know you’ve listened.

You may remember me talking about the ‘champagne and shoe’ girls. A little band of cancer warriors, Kerry, Letitia and I. Kerry and Tish had ovarian cancer and I was introduced to them quite some time ago but we hit a chord and just ‘got it’, ‘got each other’. No matter how bleak a prognosis or indeed how bleak we felt, we’ve been able to spark each other, support one another, have a laugh and look beyond.

This time last year Kerry passed away. I had the call from Tish at this conference in Berlin and my heart broke just a little bit more. Kerry was always so strong. We had a giggle. We both enjoyed bubbles and we also enjoyed the same shoe collection and spent an hour or several trying on new pairs.

But Kerry was truly Tish’s support. They both had the same diagnosis and a similar prognosis. Tish and I have been close this last year and there have been many times when she’s been feeling down or I have, we’ve met up, put the world to rights and left back in our positive places. Some times we’ve not managed to meet but talk by text. Tish has been very poorly but after living her life and going to Australia embraced life once more and foiled the experts with a change in her prognosis once again.

She’s recently taken a turn for the worst and I saw her last a few weeks ago when she was a shadow of her former self but still had a smile and a hug for me.

She was admitted again to hospital a week or so ago and we’ve texted. The last texts written by her 22yo daughter last night.

I don’t know what to do. I’m being told by text that she’s weak but ok. But I fear the worst. Selfishly. Wonder how I’m going to cope without my rock to meet with at my bench or text or talk with. Somehow the world is so much better when Tish makes it better.

I’m so scared and don’t want to be the last champagne and shoe girl here. They both had a husband or daughter in their lives and I don’t. It makes no sense.

I’ve got a couple of missed calls and voicemails on my mobile but my PIN number doesn’t work so can’t pick them up… Please tell me they’re from you?

Not really sure if I’ll send this or if you’ll read it… Or what I want from writing it. I just know I want Tish to prove them all wrong and grow old being cantankerous and naughty with me.”

Why Walkactive?

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It’s been quite a while since I did my first introductory course at Champneys and I was asked to write a piece about my Joanna Hall Walkactive experience.  I thought you might like to know what I think and why I’ve carried on with it.

The period following my diagnosis with a rare cancer, Phyllodes, I was consumed with appointments, scans, surgeries and just plain coping. Exercise and fitness had taken 2nd or perhaps 7th place and the further down the list it slipped, the harder it felt to regain it or any control over it.

 

We read and hear daily from the media about the benefits of healthy eating and exercise. We also hear a great deal about it being critical in recovery from illness. However translating the knowledge into action, particularly when you’re feeling unwell, fatigued or in pain is another thing entirely.

 

I had needed the impetus and encouragement to regain my fitness. I found this with Joanna Hall. It made ‘exercise’ less of a chore and more of an enjoyment. I’ve discovered new parks, new parts of parks, different routes to the shops and even when it’s windy and rainy, a wonderful sense of being alive.

 

My first foray was at a spa break where I learnt the technique and was introduced to Joanna Hall. I then refined it by sporadically taking other courses as I feel it helps motivate me, kick starts a new phase, eliminate any bad habits and also brush up on my technique.

Walking is a fabulous free accessible activity that can be done at any time of day or night! Add the Joanna Hall technique and scientific methodology and you can increase your well-being and fitness whilst also reshaping your waistline, tums, bums and thighs.

 

I have found that instead of jumping in my car to visit friends, post a letter or buy a pint of milk, I now put on my trainers and “Joanna Hall” it out of the front door.

Over the past 18 months I’ve completed most of the courses and trips too! They’ve all been fun and beneficial but perhaps in different ways and meeting different needs at different times.

 

WOW – Being measured at the start and end of the 4 week course motivated me to stick to the nutritional aspects of the course as well as the walks. There’s no better motivation than ‘literally’ seeing the inches disappear and be replaced by a waist!
WOWI – A 2week version of the WOW. Intensive, needs commitment to dedicate the time but a great way to kickstart.
WalkFit – 4 week course concentrating on technique and increasing pace.
WalkFirm – 4 week course which incorporates not only the Joanna Hall technique but also utilising park equipment for additional exercises such as benches, stairways and fences.
Spa breaks – A gentle(r) introduction to the Joanna Hall technique with workshops on nutrition and fitness balanced with walks and spa treatments.
La Manga Training Camp – A comprehensive timetable of techniques, improvement time trials, mountain challenge, yoga, stretches, nutrition workshop and sunshine.

 

Sometimes ‘life’ gets in the way of being good and doing exercise. I’m pleased to say that it’s mostly ‘life’ rather than ‘cancer’ these days. But despite not currently doing any courses (life is a bit busy), I hope you can still see the ‘open ankles’, longer strides and incorporated ‘J’s as I dash for the bus!

All change

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In my posting in July I mentioned that I had asked my wonderful consultant about referring me to The Royal Marsden hospital’s sarcoma team for my follow up surveillance.

At 2pm today I had my first consultation appointment with the sarcoma team at The Royal Marsden. The waiting room was absolutely packed and I waited nervously for my name to be called.

I was concerned that they wouldn’t take my case on but that I had sort of ‘discharged myself’ from my previous consultant’s care. I was worried that they would perhaps think I was over anxious about follow up scans or perhaps that they would recommend I stay with my existing hospital. I was concerned that although they are a centre of excellence for sarcoma in the UK, that the person I was assigned wouldn’t know about Phyllodes – after all there are over 70 different sub-types of sarcoma.

So despite my waiting only a very short time, I was more than a little anxious. Had I made the right decision in asking my lovely consultant to refer me? Would he take me back if I hadn’t? What would I do if they didn’t take me on as a patient? What would I do if they changed my follow up surveillance schedule in a way that worried me more?

Phew, I’ve been called.

I first met with the nurse who explained what would happen and who I would be seeing. She then left me in the little consulting room whilst I waited for the Registrar. Seemed like ages and once again all my anxieties were kicking in. The Registrar then arrived and ran through my medical history and also asked about my siblings, parents and grandparents’ medical history. She also told me that my case had been discussed at today’s MDT (multi-disciplinary team) meeting in detail.

And then, she asked the question that I was most worried about answering… why was I here and what did I want from the Royal Marsden? So I told her why (see previous post) but I also told her about our Facebook “Phyllodes Support Group” and what I’ve been doing with Living Beyond Diagnosis. She asked a few more questions and then said she’d return with the consultant.

I was then left in the little consulting room on my own… and yes the little voice in my head was once again telling me that they wouldn’t have me as a patient etc etc.

I was terrifically grateful when the door opened once more and the Registrar came back into the room accompanied by a consultant. He introduced himself and we spoke briefly about me, my medical history, why I requested the referral and my previous care.

He then asked more about the Phyllodes Support Group and was terrifically impressed with the number of members, the information and experience sharing, the documents and reference papers that have been collated and also the polls and data that we were collecting and sharing within the group. He also said that he felt that should we, as a group, wish for some assistance or input for the group, then I should just ask and he would try to facilitate this for us.

I was also able to tell him about the report that is currently being finalised containing a section about Phyllodes from the contact I have met at two Cancer data conferences in the UK. He would love to see a copy of this when published.

It goes without saying that I will be looking at what input will be useful from RMH and also what we can provide to RMH from the group… certainly it would be fabulous to have a medical facility, who specialises in sarcoma, to take an active interest in the group members and their health. Watch this space!

We then returned to my health and monitoring for recurrence or metastases from the excised malignant phyllodes tumours. We agreed that my previous consultant had done an excellent surgical job in removing both of the tumours and then ensuring that sufficient clear margins were obtained. He agreed with the advice that I should not have any adjuvant radiotherapy at this time. He also agreed that the screening regimen implemented in my previous hospital was the best to quickly identify any local recurrence (together with my own personal checks). We then spoke about any requirements for any additional screening/surveillance for possible metastases, particularly with regard to the malignancy and mitoses of the excised tumours. He suggested and has requested that I have a 6-monthly chest x-ray at the same time as my existing scans ie annual mammogram with intervening 6 monthly ultrasound of both breasts.  This chest x-ray will be looking for any traces of naughty cells in my lungs.

I left RMH this afternoon feeling that I had made the right decision to ask to be referred. Perhaps I should have made the request at an earlier stage and saved myself some levels of anxiety along the way.  But I also know that I couldn’t have managed to do that before now.

I am, of course, sorry that I won’t be hearing my, now previous, lovely consultant refer to me as ‘Miss Lumpy Bumpy’ again but I’m so very grateful for his care up until now and can only say that whoever the patient is who gets my slot on his busy schedule is a very very lucky lady.  Perhaps I shall pop in with a box of biscuits for him and the team when I’m next passing my old hospital.

So that’s it. Next scans/checks are in January. Between now and then I’ve got a number of cancer conferences to attend, not least the annual Sarcoma conference which this year is in Italy. They were asking for patient advocate attendees to speak at the conference and I’ve put my name forward.  I would love the opportunity to tell them all about our Phyllodes Support Group and also about Phyllodes itself, in the hope that perhaps more medics and researchers will be more aware and knowledgeable.

Festival Fever at Henley Rewind 80s

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A year ago I attended my first festival, Henley Rewind ‘The 80s Festival’ 2011 and survived!  This year we’ve a bigger party of people and I’m excited to show some Festival Firsties that even at 40 and 50 years of age festivals can be fun!

OK OK so it’s not Glastonbury and it is 80s music and it’s sort of civilised but we’re camping and if it rains it’ll be muddy – surely that counts, right?

We met up a few weeks ago to work out a few logistical things (and to drink a fine bit of beer and picnic in some rare sunshine!).  As the group is much larger we required a huge pitch for all the tents.  We also needed a little coordination on who was bringing what – I had visions of eleventeen bladders of wine, 14 bags of crisps and gummi bears and no real food (hey in the 80s that’d probably have been the right thing to do!).

My first disaster of the weekend though was my new 6 person tent, purchased at the end of last summer in the sale.  The first attempt at putting this up was during the Olympics and we discovered that one of the main crossover posts was missing a section.  This meant that it was quite a bit shorter and the sleeping pods don’t really do their thing!  I emailed the company in Germany and with their usual German efficiency a box arrived a few days ago rattling with new poles…. sadly the wrong ones!  Too late to do anything about it, I ventured to the stores on Thursday morning and purchased a couple of ‘festival tents’.

The second disaster was that the infection I thought had gone when I smugly told the consultant I didn’t want any surgery and discharged myself from hospital a few weeks ago, returned with vengeance on Thursday too!  After some frantic calls, my GP wrote out a prescription for me to take, doubled for the first few days so that I can survive being in a campsite but only on the basis that any sight of blood, I’m to go straight to hospital!  I had however forgotten that these pills also made me feel pretty damn horrible too with nausea, headaches and vomiting (errr not something you want to do or feel on a campsite either!). Not going to dwell on this too much but suffice it to say that my Rewind experience for Friday and Saturday was somewhat marred by the side affects – haha (oops) stopped taking the pills on Saturday night and felt so much better on Sunday!  Hehehe maybe the double-dosing had worked too!

As I arrived in the field to park the car, at the agreed early time of midday (gates don’t open until 2pm), I saw a queue snaking round the edge of the field with other campers doing the same thing!  Fortunately in the queue was the first group of our party.  Eeeek the pressure is on for us, en masse, to secure a big enough pitch (not next to the portaloos) for all 11 tents and a gazebo to be erected AND have enough space to chill out and eat and drink!

Exchanging our tickets for wristbands, we raced to find a spot.

It wasn’t long before all tents were set up (despite the fabulous sunshine and heat of the day) and we were reaching for the first cool campsite drinks!

The rest of the party arrived during the course of the afternoon and found their tents ready and waiting for them.

Friday night at Rewind is for the campers, glampers and campervaners.  The fairground is open, the bars are open and there is entertainment in a couple of locations.  The main one being a small stage where there are a couple of bands early on and then the karaoke starts… always a giggle, some in tune and some not… but certainly enough for us all to errr ‘sing’ along to!

As the bar closed we headed back to the camp for a few cheeky nightcaps.  Then the serenading of snoring began!!  Oh the joys of camping.

Following breakfast, sausage or bacon sandwiches (which was delivered to the site at 7am at the bidding of one of our campers, Steve) and then cooked by David, several of us headed out of camp.  We were fortunate to have a few local people in the group who had ‘offered’ hot running water and flushing toilets!   Oooh what bliss to be able to have a shower and get clean!

Back to campsite for a little lunch and drinks before the festival really began.  I was definately ‘off food’ so opted for being an advance party and securing sufficient amount of space in the music arena for us all to sit, dance, drink and party!  By the time I got there, ie early, the space was already limited.

The music kicked off with Grandmaster Flash.  The lineup for Saturday was Kool & the Gang, Soul II Soul, 5 Star, Doctor & The Medics, The Bangles, Rick Astley, Starship, Heather Small, Jimmy Sommerville, Sinitta and Right Said Fred.

Believe me when I say there are memories that flood back with many of the tunes and also a lot of confused looks as a tune starts up and noone appears to know what it is!  This year however I was extremely disappointed with the sound at the event.  It was really poor and for some of the acts they were barely audible!

Sunday began much as Saturday with breakfast (which I could now stomach) and the packing up of some of the tents.  Those people who were working on Monday morning would make an escape on Sunday evening.  Why is it that tents never go back in to be bags as easily as they’ve come out… and as for pop up tents???

(sorry about the lack of fade at the end!!)

Sunday’s lineup was much better than Saturday however the sound was still not great for a lot of the acts.  😦

Highlights musically have to be Roland Gift, Tony Hadley and OMD.  All of them great performers as well which, after all, is why you go to see them live!  I think also that Tony Hadley had the advantage in that we’d all had a warm up during the Olympics with ‘Gold‘!

A special mention has to go to all the people who dressed up for Rewind.   Truly some awesome outfits!  Not sure how you managed to keep the facepaint on all day in that heat though!

A selection:

 

Hehehe did you spot the baby in the last picture with neon ear defenders?

Time to hang up the fluorescent items and remove the fluro nail polish and multicoloured fluro eyelashes for another year!

The tents are now packed away and dry…

and I shall have to acquire some new paints for my tent so it can be updated for another day!

Whoohooo, the results are in and it’s good!

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I can’t tell you how sick I felt today going to the hospital. Why? I should be used to it by now. … shouldn’t I? The anxiety levels were through the roof as I tried to find a parking space in the car park. As I was cutting it fine, arriving only a minute before my appointment time, I decided to only buy 1 hours car parking (at a mere cost of £2.20/hr). Rushing across the lengthy car park and nearly coming a cropper as I missed a pavement, I rather launched myself into the clinic!

After checking in, I settled down and waited. And waited.

I realised though that actually I’d been spending far less time in this particular clinic of late… well there were magazines I’d not read, so that’s got to be a good sign. Right? They even had the latest Vita, which is a magazine produced by Breast Cancer Care and a wonderful source of information and support for anyone with primary or secondary breast cancer (and their carers).


I was also super-chuffed that there was an article about David Jay and The Scar Project. Love that project and am so honoured to have known Jolene and others who have taken part and shared their journey through the images. Incredible.

After an hour, I rushed out to put more money in for another hour parking…. And of course half way across the car park the heavens opened!

Seriously though, the cost of car parking in hospitals is absolutely mental and for those of us who have to visit hospitals regularly, is a real cost burden. As I made my way back to clinic in the rain, I thought I’ve probably had over 50 hospital appointments since 2009 and each of them cost roughly £4, that’s £200 I could have spent on champagne!!! (Oh I mean saved for a rainy day)

Anyway I think the trip to the car and my attempts at mathematics helped me get some perspective about my appointment. It wasn’t long afterward that I was called in to see the consultant and get my results.

I was shown into the ‘good room’ (ie not the room of doom), which helps enormously. A few minutes later, my consultant appeared with a smiley face and welcomed me warmly. Seriously, if there are any medics reading this, you could really learn from this man – how much easier is an appointment and our anxiety levels when someone is genuinely warm and welcoming?

We had our usual little chat, he told me I was looking well (another point for the medics!). Although to be fair, I’ve also learnt that I need to make the effort when I’m anxious.. always matching underwear, shoes, nails, hair done and make up applied.

We then talked some more about Phyllodes, what it is, what I’d learnt, what he’s learnt and what he’s telling his trainees. It’s always so encouraging to think that by my diagnosis and it being weird and rare, he’s taken that (and with my encouragement) and ensuring that there are going to be some medics of the future that know a little bit about it. I always hope that they get eager to learn more.

Next the manual examination. Once again I could commend him on his surgical handywork. The scar tissue is getting less and the excision site becoming more even. We talked about ‘evening up’ by surgery and it’s good to know the offer is there and he’d do a fabulous job… but I’m not ready for surgery again anytime soon.

Then I broached the ‘difficult subject’. As you will all know from reading my blog, I can’t be any happier with the way my consultant has looked after me, managed my case and helped me through this, supporting me every step of the way. However there have been the blips with the radiography department where they don’t necessarily understand about Phyllodes nor feel checks are necessary (or as has been mentioned “it’s not as if you’ve got breast cancer”!).

Anyway, the bottom line is that as someone diagnosed with Phyllodes, a rare soft tissue sarcoma, my case should have been referred to a sarcoma specialist to manage. However I’ve always been more than a little anxious to leave the fabulous care of my consultant. I still am.

But today I asked him if I could be referred to the Royal Marsden in London for my follow up regimen. I explained why I thought it was important to be with a sarcoma team and also a team that I know have other Phyllodes patients and understand them and the best treatment etc. I also told him that I was sorry I couldn’t still be seen by him sometimes! It does seem right though that I move on and my place in the breast cancer unit is indeed filled with a breast cancer patient. He’s a truly wonderful consultant and surgeon and whoever fills my slot in his busy schedule is indeed a very fortunate person.

He agreed that this was probably the best thing. However has said that if ever I’m worried or he can help in anyway, then to give him a call.

As I left, he put his hand out to shake mine and then laughed and said he felt it more appropriate to give me a hug!

On the way home in the car I shed a tear or two. I’m not sure if it’s because I’m scared if I’ve done the right thing. Am I leaving someone who I knows cares about my wellbeing and health and stepping into the unknown or am I leaving him but going to a more specialist unit that will be able to add Phyllodes expertise as well as care?

I hope I’ve done the right thing.

Personal trainer

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I could blame my weight gain on having cancer.  I could blame it on not feeling well or lack of energy or fatigue or lots of other stuff.  BUT if I’m honest I know it’s because I’ve got a lazy streak and don’t fit exercise into my already busy lifestyle.  For example, instead of a 15 minute walk to the shops to get a pint of milk, I make an excuse that I need to jump in the car as I don’t have time to walk there… it probably takes the same amount of time by foot!

I also know that although I know the principles of healthy eating, know how to cook well and prepare nutritious meals, I often don’t.  I regularly dash from meeting to meeting or place to place, snatching a quick snack enroute.  I eat at crazy times of the day and night.  I also enjoy good food.

Working from home (Living Beyond Diagnosis – now social media enterprises (twitter & facebook) and and the various cancer network meetings) means that I’m often at my computer for endless hours with little movement.  I lead a sedentary lifestyle and get caught up in all that I have to do without making the time for a walk, exercise, swim, gym etc.

I also know in my heart of hearts that my weight gain is affecting my personal confidence.  It needs to change.  I need to change it.

Last week I signed up for personal training.  I need motivating.  I’ve now had 3 sessions and already feel better for them.  I’ve also attended Bootcamp Pilates sessions twice – again, although hard work, I do feel better for them too.

I don’t want to be a size zero but I do want to feel good about me again.  I do want to look at a photograph that’s taken of me and not want to destroy it immediately or wear clothes and feel good in them!  I also don’t want anyone to tell me that I may be causing a recurrence of cancer BECAUSE I’m overweight!

Why a I telling you this?  I needed to put it out there and I need you to keep me in check too!  Don’t let that lazy streak reappear!

Urology consultant appt

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I was determined that today was going to be my last and final visit to “the mortuary”… but not before an open and honest discussion was to take place between myself and the consultants. With all the tests I’ve had over the past 18 months from CT scans, endoscopy, colonoscopy, gastroscopy and more ultrasounds than I could shake a stick at… I’ve had enough.

I’ve had enough of waiting rooms, endless letters, grumpy self-effacing doctors that don’t listen, being prodded and poked, having to find friends available to pick me up following any procedures, hospital car parking charges, and… ooh I could go on!

As someone with an NHS frequent flyer card, I’ve had over 24 hospital and GP appointments since my first ‘obvious’ symptoms ie blood.  My first appointment was with my GP and he referred me to for an urgent gastroscopy – such a shame that this appointment at the hospital didn’t happen for some 7 months!  Instead I was passed through many departments and had many more tests.

I will now write the posts that I should have written during my journey with this little ‘hiccup’. Until now I’ve felt let down, depressed, anxious and worried that the symptoms were in fact all pointing to a metastases of cancer… but without feeling as if any of the tests or people I was seeing were listening or really gave a monkey nut about finding a solution.

I’ve been passed from pillar to post and between three hospital sites that all (allegedly) are the same medical unit but really don’t speak to one another or share notes. I’ve had to remind all but 2 hospital consultants that I am also a cancer survivor ie have a history of cancer (apparently it’s been missing from my notes throughout… although I now know this to be untrue, just simply that they haven’t read my notes!)

All that said, today’s appointment went well. I met with a urology consultant who was kind, listened and ‘consulted’. He welcomed me to the consulting room. Apologised for the delay in being seen (a delay is a given in this hospital but this the first apology I’ve ever received!). He then quickly looked at the test results I had bought in from my last appointment at a different hospital – the nurse had given them to me rather than rely on internal post!

We then discussed my case. How I was feeling currently. Had the latest course of antibiotics worked. He also discussed the ‘theory’ that ALL these problems stemmed from an infection I received in 2009 following my 2nd Phyllodes operation. This infection not being treated and steadily getting worse and spreading to other organs. It makes sense. It also explains the earlier symptoms which were (amongst others) constant nausea, fatigue, sporadic pain and cramps… the worst of which were nausea and fatigue!

As the infection spread the symptoms got worse and led the additional external symptoms in the loss of blood and constant need for the loo.

The latest course of antibiotics were given to me for the infections discovered in my oesophagus and stomach.  These appear to have worked (mostly).  At least the blood has now stopped. The pain is much less frequent and the reflux pain can be managed with a regular swig of Gaviscon or chewing a Rennie or two.

So with consultation, we decided that we know what’s gone on. We know where the issues are. The symptoms appear to have faded or be improving. We also know I don’t want to spend a moment longer in hospitals, more tests or retests or with endless courses of antibiotics.

I chose today to be discharged from the hospital. The lovely consultant said he would be writing to my GP to explain that should I get any of the symptoms back, I am to have an emergency appointment with the GP for urgent antibiotics. And IF the blood returns, I get a ‘go straight to hospital card’.

I truly wish we could have had this conclusion some months ago. Or for the nurse that caused the problems in 2009 to have thought about the consequences and perhaps have given me antibiotics at the time. I’m saddened that I’ve felt so dreadful for so long and spent a great many hours worrying that the cancer had spread and it’s being missed whilst I skip from hospital department to another.

I guess today I should be grateful that it’s not more cancer.

(tomorrow I go to a different hospital for the results of my 6 monthly Phyllodes check – what joy!)

Mammogram

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As you know from my previous post, I’ve been a touch anxious about this upcoming check.  What I neglected to tell you is that I’ve been having a lot of pain in my breasts in the past couple of months to the point where the pain has been waking me up at night or I’ve found myself clutching or rubbing my breast in public! They’ve also been quite lumpy bumpy.

You’ll also know from my previous posts that I’ve not a clue what’s ‘normal’.  I wasn’t one of those people who followed the instructions and checked themselves regularly and therefore knew what was my ‘normal’.  The first time I’d really ‘checked myself’ was after I’d found ‘the lump’.

So I think the lumpy bumpiness has really added to my scanxiety this time round.  Last night I eventually fell asleep at about 2.30am and was awake again at 4.30am!  Another thing about me, is that when I’m tired I get tearful but I knew I had to pull myself together and get through today.

My appointment was at 10am and I knew that I was being seen with the ‘special cases’ today (not a normal mammo day at our hospital) and was therefore really hoping that we had the nice mammographer.  There shouldn’t be such a difference between them but there is.  There’s the younger lady who has quite clearly never had a mammogram nor does she think they hurt.  I remember once when I had tears running down my face and wincing with pain when she said “stop making a fuss, it’ll be over in a minute”… if my boob hadn’t been sandwiched tightly, I’d have thumped her!

Luckily today I had the lovely mammographer who took the time to ‘position’ me perfectly and told me when to breathe in and out to relieve the pain too.  Sounds odd, but what I’ve learnt is that even the positioning of your feet and shoulders have a bearing on the pain levels.  Oooh I also cheated a little by taking an ibuprofen and paracetemol beforehand so that they were a little less painful!

I was seen quickly and the mammogram seemed to take only a short while AND without the need to redo any pictures!  I was then asked to wait in the screening waiting area and not to get dressed whilst the radiographer looked over the slides.  I couldn’t help wonder if this was because there was something suspicious.

10 minutes later, I was told to get dressed (as if I’d not want to wear those gorgeous gowns a moment longer??) and was free to leave.

I’m back to the consultant for the results next week but, subject to being ushered into ‘the room of doom’, I think it’s OK.

And if it’s not, this is what I’ve threatened my consultant with…

Right now though, I’m shattered.   Oooh I so can’t wait to go to bed soon…

PS  Could the painful boobs be due to an early menopause?  I wonder when Mum went through menopause?  Wish she was still alive and able to tell me.

Happy Birthday to our NHS

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Today our beloved NHS is 64 years old.  I’m just hoping that it’s not going to retire at 65!

I’m aware that sometimes I don’t sound grateful for the wonderful FREE service that is provided to all via the NHS service.  [I can already see comments being posted telling me it’s not a fair system, it doesn’t work etc etc…]

I am a frequent flyer with the NHS since my diagnosis in 2009 with malignant phyllodes.  I’m reminded regularly from postings in our Phyllodes Support Group from other international members about the difficulties they have in getting and affording good healthcare.  One lady had to work three jobs to get together enough money for her operation all the whilst knowing and feeling that the tumour was getting larger every day.  That can’t be right?

I think sometimes we forget just how fortunate we are to have free healthcare.  Sometimes we dwell on the bits that don’t work or the consultants that are feckless idiots with absolutely no bedside manner (ooops!).  We get frustrated when we wait for a week to be seen or a return phone call is delayed, an appointment time messed up or the medic that we see just doesn’t know everything!  I think sometimes we forget that the medics that we see are also human, they know so much but actually don’t know it all.  And they’re also doing the very best that they can.

As you know from my post at the beginning of this journey (Doctor Appointment) that when I needed to be listened to; when I needed to be referred; and when I needed to be cared for; he was there.  I couldn’t have asked for more.  He rushed me through as an urgent referral.  He watched and monitored the correspondence coming back to him from other medical departments and throughout my journey.  He even took the time to call me to see if I was OK, emotionally/psychologically not medically!  I’m grateful every day for the wonderful service my GP afforded to me.

However this post is about the NHS.  About celebrating the services that we have.  About understanding the numbers that they look after and perhaps making me a little less antsy when things don’t quite go right!

Some dates, facts and numbers about the NHS (taken from NHS 60th birthday articles)…

  • 5 July 1948 the National Health Service was born when the then Health Secretary, opens Park Hospital in Manchester.
  • 1952 – Prescription charges of one shilling (5p) were introduced as well as a flat rate for dental treatment.
  • 1953 – DNA structure revealed
  • 1954 – Smoking-cancer link established
  • 1958 – Polio and diptheria vaccinations for everyone under the age of 15
  • 1960 – First kidney transplant
  • 1961 – The contraceptive pill is made widely available.
  • 1962 – First hip replacement
  • 1962 – The Porritt Report is published and results in Enoch Powell’s Hospital Plan
  • 1967 – Salmon Report makes recommendations for the development of senior nursing staff under the direction of a chief nursing officer.
  • 1967 – The Abortion Act is introduced
  • 1968 – Sextuplets born after fertility treatment.
  • 1968 – First heart transplant
  • 1972 – CT scans used
  • 1975 – Endorphins discovered
  • 1978 – First test tube baby
  • 1979 – First successful bone marrow transplant
  • 1980 – Keyhole surgery is used to remove gallbladder
  • 1980 – MRI scans introduced
  • 1981 – Improved health of babies (1981 census shows 11 babies in every 1,000 die before the age of 1.  In 1980 this figure was 160/1,000)
  • 1986 – AIDS health campaign launched
  • 1987 – Heart, lung and liver transplant
  • 1988 – National breast screening programme introduced
  • 1990 – NHS and Community Care Act
  • 1991 – 57 NHS trusts established to make the service more responsive to the user at a local level
  • 1994 – National NHS organ donor register is set up
  • 1998 – A nurse-led advice service providing 24-hr health advice over the phone (NHS Direct) is launched
  • 2000 – NHS walk-in centres introduced
  • 2002 – Primary care trusts are set up to improve the administration and delivery of healthcare at a local level
  • 2002 – First successful gene therapy
  • 2004 – First foundation trusts created
  • 2006 – Extended patient choice
  • 2006 – National bowel caner screening programme is launched
  • 2007 – NHS Choices website is launched
  • 2007 – Smoking ban is introduced in restaurants, pubs and other public places
  • 2007 – Introduction of the robotic arm leads to groundbreaking heart operations
  • 2008 – Free choice introduced so patients can choose from any hospital or clinic that meets NHS standards
  • 2008 – HPV vaccination programme
  • 2009 – The NHS Constitution is published and sets out your rights as an NHS patient
  • 2009 – The New Horizons programme is launched to improve adult mental health services in England
  • 2009 – The NHS Health Check is introduced for adults between the ages of 40 & 74
Did you know?  Some facts and figures from 2008 (again marking the 60th anniversary)
  • The NHS is one of the largest employers in the world
  • The NHS employs 1.3million people.  Approximately 1 in 23 of the working population
  • Around 77% of the NHS workforce is female
  • Nurses make up the largest part of the NHS workforce, at just under 30%
  • NHS Direct receives around 20 calls per minute.
  • 75% of women aged 53-64 in England are screened for breast caner at least once every three years
  • NHS Ambulance Service received 6.3 million emergency calls in 2005/2006, which is roughly 360 per hour
  • NHS ambulances make over 50,000 emergency journeys each week
  • Approximately 170,000 people go for an eyesight test each week
  • NHS staff are in contact with more than 1.5 million patients and families every day
  • Full-time GPs treat an average of 255 patients a week
  • In a typical week, 1.4 million people will receive help in their home from the NHS

By the way, have you ever thanked someone in the NHS? We’re all so very quick to say what’s gone wrong and who’s p’d us off, that sometimes we forget to say ‘thank you’ or send a note to the hospital PALS, GP surgery, care home director etc to say when something went right or someone went the extra mile…. like us, those that do a great job also love to hear they did well… go on… do it!

So, as I put at the top of this post, the NHS is 64 today.  What can each of us do to help it be here long past it’s retirement age of 65?