Urology consultant appt

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!)

BBC Proms 2012

The first Proms concert took place on 10 August 1895 and were named after the manager of the newly built Queen’s Hall in London who ‘created’ the idea.  “Mr Robert Newman’s Promenade Concerts’ began and the programmes lasted around 3 hours each!  I February of 1895 Newman offered Henry Wood conductorship of a permanent orchestra of the first Proms season.

Despite moving to the Albert Hall, a few World Wars which briefly stopped play, the Proms continue today in with much the same concept; to present the widest range of music, performed to the highest standards, to large audiences.

And you are still able to promenade in the Royal Albert Hall’s arena in the central area, lending the Proms its unique informal atmosphere.

This evening, the Director of Fun and I headed off to the Albert Hall clutching our tickets to see and hear Debussy – Pelléas et Mélisande.  Surprisingly enough the sun was shining (albeit not warmly) and the light showed some of the buildings in the vicinity a true delight.

Inside the Albert Hall, I can’t help but once again be in awe of the beauty of the building, the splendour and design.  Tier up on tier of seats, boxes and gallery.  Below us is the open plan ‘arena’ where ticketholders can sit, stand, promenade or dance (just so long as they do it quietly!).

The concert was amazing, the voices reaching the upper echelons of the building.  The audience captured in the music, voice and story unfolding before us.  You could hear a penny drop but fortunately there were none!  In the first intermission, many people begin clearing their throats – always a funny moment to think they’d been trying hard not to do so during the performance but together sounds more like a musical cacophony of illness!

Beautiful performances and I will try hard to get to the Albert Hall for another before the end of the Proms season in September.

A few piccies on our walk home.  I just love the Béla Bartók sculpture in South Kensington… particularly since there seems to be his dashing Grandson stood behind him!

Champagne & Fromage (AKA French Bubbles)

I mentioned a new fave place in London, Champagne & Fromage, in my posting “When colleagues become friends” but what I’ve neglected to tell you is that the 6 degrees of separation rule applies here too.  Although with the advent of Twitter and Facebook, I’m convinced that it really is about 4 degrees of separation.

Anyway, I tweeted about my visit to Champagne & Fromage on twitter and was quickly replied to by Abi at Media Wisdom to say that they were working with French Bubbles (the company who owns Champagne & Fromage) for their photographic portfolio.  Giles and Abi took some headshot photos of me for use with the Living Beyond Diagnosis website, press releases and other media.  If you need pictures of yourself, your business, products etc etc, give Abi and Giles a call at Media Wisdom.

Yesterday however I spotted a tweet from Abi mentioning that they were shooting some pics for a champagne and cheese client… well there could only be one, surely!  So I replied quickly to ask if it was in fact to one my new fave place and also how envious I was – most cheeky but it’s true!  Anyway this evening I received a message from Abi:

“@mediawisdom We certainly were at your favourite place, and a little something for you… ow.ly/i/Ltm9

Awww isn’t that just gorgeous???  You just have to visit Champagne & Fromage.  Maybe I’ll see you there?

Ooooh but another exciting piece of news about my fave place is that the photos that were being taken was for a new service.

“@Frenchbubbles Photo shooting for our new business: chilled #champagne + Fromage delivered in 1hr max in all London with scooters!! pic.twitter.com/LARrBPTy

I’m sure many of you in London could think of someone who deserves a treat like this… yes??

Mammogram

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.

Random photos of London

During a walk through Londontown today with a friend, and managing ‘mostly’ to avoid the rain showers, I spotted these pics… thought you might enjoy them.

 Robots?

An interesting and colourful tree… looked to be made of material

Oooh Oooh I’m excited.. we’ve got lanes marked out for the Olympics!

 

 

 

Loved these glass panels and the way they caught the light…. so reminded me of work by David Mitchell at http://www.cafe-jello.com.  One day I will own a piece of his glass artwork… I will you know!

Seriously awesomely awesome

Wowza, tonight after mucho anticipation we finally convened at the very fabulous Ledbury restaurant.  Some months ago a reservation was made for a table for foodies to sample Brett Graham’s tasting menu and accompanying wines.  It’s not a cheap night out but something that should be an experience, planned, counted down to and then every second of it savoured.

Tonight was the night.

I arrived first and was ushered by the fabulous maitre d’, who goes by the name of Stephen, down the kitchen to say hello to Brett.  Brett has recently got married and we took a browse through the wedding photos – all I will say is that his friends have a mountain to climb to come anywhere near to matching up with the pure excellence of his wedding… not because of the opulence but because of the attention to detail, (by the bride and groom) that had been lavished on the venue, table settings, design and, of course, food in such a splendid way.  Truly a-mazing.

The meal is to be described below in pictures… I couldn’t possibly do it the justice it deserves with words – it really was soooo utterly scrumptious, in every way.

I didn’t take photos of the many different wines and bubbles that were consumed throughout the meal and prior to the meal with the many hors d’oeuvres that were so beautifully presented before us…. but suffice it to say we had some stunning wines that each complemented the dishes so beautifully and were so carefully chosen and selected by our fabulous sommelier.

Hey I did say it was a treat… forgive me but I’m looking at the pictures again and tasting each morsel of food one more time!

B – “a wonderful evening, with lovely company, laughter, lovely food…” “we were spoiled to death”

R – “Outstanding night.  Superb food, brilliant service and supremely flirty company.”  “Proper night with proper food n booze n laughs n friends.  Well done Wallace!”

As for my comments… Oooooh I was in heaven and truly truly cannot recommend the Ledbury enough.  Brett Graham really is an incredible chef.  His front of house staff are simply the best – the maitre d’, the sommelier and the waiting staff.  Of course we should also mention the other incredible chefs in the kitchen who not only produce faultless plates of awesome food but do so with a smile on their faces and a passion for what they’re delivering that is clear for all to see.

My only surprise recently was that The Ledbury was voted 14th in the World’s Best Restaurants… it should have been No. 1!

PS – They also do a wonderful set lunch of three courses for £35.  I promise you will not be disappointed!

PPS – If you do go, remember to invite me!!

NW London User Partnership Group – NW London Cancer Network

Tonight’s meeting of the User Partnership was, as usual, enlightening and thought provoking.

The main agenda item was in relation to the new NHS structure, how it will affect cancer services in NW London and what the ‘London Cancer Alliance’ really is!

The London Cancer Alliance (LCA) is a new collaborative partnership of 17 acute provider trusts across NW, SW & SE London. Its aim is to improve cancer patients’ experience, outcomes and quality of life though the delivery of excellence in clinical care, research, innovation and education; ensure equitable access to integrated pathways across primary, secondary, tertiary, community and third sectors; promote prevention and early detection of cancer by influencing public health messages.

A presentation was given in regards to the new structure proposed at the LCA. We saw the list of the 17 partner trusts that have now signed up and committed to the LCA and proposed timescales for implementation and appointment.

There are many reasons for the LCA, not least in order to set standards, propose and regular accreditations for providers of cancer services throughout the LCA, co-ordinate and share cancer research and exchanging information and best practice.

In a perfect world however neighbouring areas would always have shared, set standards, created and managed best practice but we know that this didn’t always happen and there has often been an element of competition when there should have been collaboration.

The new structure of the LCA should be more patient focussed. Demonstrate via metrics that there are improved patient experience and outcomes in London. To support neighbouring providers, hospitals and organisations rather than relish in their failure!

So will it work? How long will it take? Will it be implemented in this format or re-shaped again?

It is anticipated that it will be fully delivered in its current format within 3 years. Will it work or will it need re-shaping? Yes it’ll probably morph a little… but hopefully to include new innovations or progress that will make it work better. So will it work? I hope so. Wouldn’t it be a great place if within London Cancer Alliance area, there was patient-centric collaborative care?

One final point with regard to the new NHS structure including the LCA, WE, patient advocates or people who have been affected by cancer (directly or indirectly, as patients, carers, friends, colleagues or relatives) must also be involved in the creation, moulding and upholding of any new structure.  At all stages we should have representative to ensure that the discussions remain patient-focussed rather than budget or even ego led!

Also discussed was how we, patient advocates and members of the user group, could assist in better awareness of symptoms of cancer. The age old argument was made that 20% of cancer deaths could be prevented IF the symptoms were recognised earlier and that often people will return a number of times to a GP before being referred. We know this to be absolutely true and there are various projects underway to help educate GPs, for example:

GP Awareness campaign from Sarcoma UK
Macmillan DVD – Care in Primary Care – a toolkit, Macmillan Learn Zone
NHS Cancer Screening Programme information packs
etc

Is there some way that you could get involved?  Have you been affected by cancer?  If so, could you speak at your GP practice, hospital, nurse training etc?

However WE must also educate the general public. If we know that cervical screening saves lives, why do some people not turn up for screening or have never been screened? The same applies for mammograms and the bowel cancer screening programme.

The point was also made that despite it being increasingly difficult (in some practices) to get a GP appointment when you need one.  Comment was made about the sign that you see in some GP practices that ‘warns’ patients that they can only bring one issue to the GP per appointment – does this stop some patients from mentioning more than one symptom? Surely the education must also extend to educating the patients in how to get the most out of their appointment time.

We need to utilise the GP appointment time more efficiently. Make a list of symptoms. Note down the time of day or physical activity at the time of the symptoms. Take the list with you in a readable format and, if you’re uneasy about discussing them, give the list to the GP.  Take a notebook and pen with you to write down any answers or observations that your GP may make.  If there are any familial concerns about a symptom such a family member being diagnosed, remember to mention it too!

The Daily Mail published an article about the 7 vital steps to making the most of a GP appointment.  Click here to read

My final word though – if you’ve a friend or relative who’s concerned about going to the GP or whom you think may have concerns asking questions, stating symptoms etc, why not go with them?

Happy Birthday to our NHS

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?

Scanxiety

I’m sorry to say it’s whinge time…. we wonder why the NHS has no money when we know there are inefficiencies taking place every day.  It’s just terrifically frustrating when you’re on the receiving end of them!

On Saturday I received two letters from my hospital about my six monthly checkup scans.  Why two?  Hmm that’s a very fine question to ask.  Why two indeed?  And why are they identical?  Both invite me to the same appointment, same date, same time and both with the time and date handwritten in the same writing!  But of course in two different envelopes with two postage marks saying that our beloved NHS has paid double to advise me about my one appointment!

Is that my only whinge?  Errr no!!

The appointment(s) that they’ve given me is a week AFTER my appointment with my consultant where he will give me the results of the scans I’m having a week later… Doh!

So on Monday I called the number advised on the letter(s).  Of course it went through to an answerphone where I left a message asking for my appointment to be bought forward to prior to my consultant appointment.  Late on Monday, I had a call from someone to advise that they’d picked up the message but weren’t in charge of booking, couldn’t change my appointment and really didn’t understand why I wanted it sooner anyway?  After much explaining (gesticulating and pulling faces at my end – thank heavens for non-video calls!) and pointedly repeating the dates and order that scans and results should be in, she advised that she’d have to call me back tomorrow.

Tomorrow is now today… she understands the problem.  They’ve squeezed me in to an appointment slot a week BEFORE my consultant appointment.   Hurrah!  Well done.  2 letters and 3 phone calls later… oh and the new letter(s) that will be on their way to confirm the phone call.

What really frustrates me about all this though is a couple of things.  I was already having scanxiety about the upcoming appointment (which I knew was in July even if they didn’t!).  Do they not think that we have sleepless nights and worry that they might just find a return of the cancer?   Do they know get that the reason these scans are done is to prove that it’s not come back?  Do they not think that actually this is important?  Do they not think that it’s a little bit more stressful than a visit to the hairdressers?  So to have to take time out and to explain why the scan and result should be in that order etc is just adding to the anxiety levels.

And if they F’ing tell me at this appointment that I should be bloody “grateful that it’s not breast cancer” or “well at least it’s not breast cancer” or similar, I promise you I am going to hit them!

No it was a rare cancer, Phyllodes, something that no bugga out there appears to know anything about or able to provide consistent cohesive advice and information about surgery, treatment, prognosis or care!

And breathe…

Right, whinge over.  Thanks for listening.

Soz… am just a little stressed and worried about these scans – no other reason than the “what if…

Sssssh secret mission

OK so I can’t tell you where I’ve been but I will share with you what I’ve been doing this evening.

I’ve been undercover with Silent Customer mystery dining.  Obviously I can tell you no more about where I was or to describe the location and what it was like (well except to say that they’ll be getting a good review on most elements filed!)….but suffice it to say that we had a great evening.

Importantly, I was also able to meet up with a friend who I have met through twitter and ‘cancerland’ but whom actually lives only a mile or so from where I was in 2009, when I started this blog site!  Funny world and I’m quite sure that if we dug down a little we’d find friends in common as well as the many places that already are.

Tonight was a celebration for us both… a celebration of life and lives past and present.  It’s one of the hazards of ‘living in cancerland’ that you get to be great friends with people who are diagnosed with cancer and leave this world too soon.  Or just sometimes you go through a patch when it seems that you’re surrounded by people who are diagnosed and pass away.  But what we must always remember is that each of those passing are special and deserve a moment of reflection and love, together with a glass of bubbles raised in their honour.

Tonight we were able to talk freely about some things that have happened over the past few months.  We spoke of the solutions to, in some instances, moving on and moving past and also stopping and dwelling in others.  We talked of time for ourselves and we talked about times to give and share.  We talked of volunteering and challenges.  We talked about the NHS, work, projects and planning.  We talked of changing the world, if just by a little bit at a time.

Truly a lovely evening with a wonderful and inspirational new friend… and the champagne, three courses, coffee and wine only cost us each a tenner after I’m reimbursed for filing the review/report to Silent Customer!