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!)

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

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?

Physio and medical

I’m often told that people are exhausted just listening to all the things that I manage to squeeze in to a day.  The truth is, sometimes so am I!  But if the past few years have taught me something, it’s to make the most of life’s time, to not let an opportunity pass you by and to embrace all that life throws at you – good and bad!

Today was a perfect example.  My day started with a physio appointment.  Not that unusual you may think but it was actually a silent customer assignment and I was there to assess their services, constructively criticise where I, as a customer, felt that there could be improvement and also to praise staff, settings that deserve a mention.  In the bargain, I receive physio for free.  As you know from previous postings, physio is something that I have done recently anyway to release the problems in my calves, shins and ankles.  I have to say I was impressed by the very thorough service I received and will be going back (and paying for it!).

A quick dash home and change so that I can then get to St Helier hospital.  First to meet up for coffee with the mother of a young girl diagnosed with phyllodes and then for my consultant follow up appointment with the gastro team.

It struck me once again that as a mother of a child/young person diagnosed with a cancer, this lady has an enormous burden.  On the one hand you want to assure your child that they’ve received the best possible treatment and surgery and that there is very little, err no chance of recurrence.  On the other, you’re asking questions, reading articles and trying to learn ‘what next?’, ‘what if?’, ‘have I done all that I can to protect my child?’, ‘is there anyone who can help me understand?’.  There’s also the issue of talking to your child.  What sort of a conversation do you have?  How do you begin?  Are they also seeking answers and having concerns and not showing you to protect you?

I don’t have the answers however I do know that to talk about it is probably the only way forward.  Both parties need to understand each other’s concerns.  Both parties need to understand that the other one is hurting or to share information that you’ve found.  That said, the ‘conversation’ mustn’t fuel worry but simply to share concerns.

This morning I felt the hurt of a mother unsure of the direction to take and unsure that she had done enough.  She has and she continues to do so.  Having met both her and her husband, I was in awe of the closeness of their family and overwhelming love.

Sadly, just a quick coffee and catchup…. but I promise you we had a laugh too!

Then off to see the delightful consultant.  Some of you may have heard me refer to this hospital as ‘The Mortuary’ and I wanted to show you a little bit of why… so here’s two pictures.

This is a ‘good’ photo of the hospital now.  Go on, tell me what you think it looks like?  Errr inviting, huh?

1960s aerial shot of St Helier Hospital.  Not sure it’s changed since then but this shot reminds me of a prison H block!

Anyway, I digress.  My appointment.

No surprise when I tell you that the waiting room was full.  It was hot, stuffy and had no air conditioning working and ‘apparently’ we weren’t allowed to open the doors.  It was after all 30* outside and you never know what bugs we may bring in! (or cultivate in the packed waiting room).  I loitered and lent against a wall waiting for one of the hot plastic covered chairs to become free for me to sit and wait.  It was quite a while and I did wonder if the only way we’d get a seat would be when one of the patients passed away!

I thought I may wander round the ‘Cancer Information Centre’ to see what charities and organisations had to offer.  Perhaps I could promote an event or a charity via Living Beyond Diagnosis’ social networking.  However… dah dah dah… the Information Centre had a notice on the door saying that it’s not until next week.  Hmmm in all the appointments I’ve had at St Helier, it’s never been open… what do they think we’re going to do?  Steal a leaflet?  I might sound flippant about this but actually it really upsets me.  A resource that is so vital to people diagnosed or their friends or family supporting them to find information isn’t ‘open’???

Eventually the mischief took over and I had to tweet saying that the hot waiting room was full and way behind time as usual.  (St Helier Hospital follow me on twitter!).  Sure enough I was called within the next 5 minutes to see the consultant.  Hmmm the power of social networking or my turn?  I’ll leave you to decide.

Right… I shall describe my encounter and leave you to make your own mind up about if this is how any patient should be treated.

I opened the door to see a young consultant slumped back in his chair, arms resting on each respective arm rest and a big grin on his face.  I said my name and hello.  He remained slumped in his chair and eventually, after a long intake of breath (whilst I sat down), he sat up, reached for my file and congratulated me on ‘selecting all available scans and tests from ‘our’ menu’.  He then grinned some more and relaxed back into his chair to await my reply.

I was just a little aghast at his attitude and managed to bite my tongue and not remind him that it took them 7 months for an urgent referral for an endoscopy to be carried out.  For the symptoms to only have stopped with antibiotics from my GP.  For his sanctimonious attitude.

I then informed him (I wasn’t going to bother waiting for questions that probably wouldn’t come) that the antibiotics received from my GP had held the symptoms (reflux, blood, nausea) at bay whilst I was taking them, but 2 days after I finished the course, the symptoms (not the blood) were back.  His suggestion (genius) to discharge me and should the symptoms come back to see my GP for further courses of antibiotics.

I did something that I would never advise anyone else to do… leave and not look back.  I’ve lost the will to fight.  I know I can get more antibiotics from the GP (which I’m in the course of doing) and will rely on these to ‘fix’ the symptoms.  I don’t however intend to return to The Mortuary ever again.


Following on from the disastrous attempt last month, I tried again.

I was sent the bowel prep and followed the instructions carefully (eek I really didn’t want to be too far from home!). By the morning I was very hungry with my empty tummy so pleased for an early start. I took a taxi to the hospital (a different hospital to the last) and had made arrangements for a friend to collect me after the procedure. So I’d done my bit….

However I was super surprised to find the waiting room at the hospital full of patients. It was a Saturday morning!

I soon realised that I was way down the queue to be seen and sat patiently slowly supping water whilst listening to my tummy rumble in the hope that my throat hadn’t been cut! One by one, the other patients were called until only I remained in the waiting room. I had spoken to a nurse who knew I was there and had said I’d be seen soon. So I was more than a little surprised when a registrar approached me and asked who I was waiting for! I explained that I’d now been there 3 hours and was waiting for my colonoscopy procedure having taken the bowel prep and was blinking hungry and bored! His response was a little shocked and rushed off. Returning minutes later to explain what had happened – I quickly said I wasn’t leaving until it had been done (and yes, I was close to tears). He told me that this clinic was always deliberately over booked by between 10-20% of patents. I asked why and was told that they expected patients not to turn up to it and more than often over 10% of them didn’t! However today was different. Most patients had turned up.

Why, when you’re referred for a procedure because of health concerns, would you not attend a screening which may well save your life or at the least diagnose why the concerns were there?

Anyway, not my problem. But it was. The consultant had apparently been on duty for the maximum amount of time and had reach the maximum amount of patients that he’s allowed to carry out the procedure on in one day.

Again, not my problem. I wasn’t leaving and doing this AGAIN.

Fortunately for me, they managed to find a consultant loitering in the corridors that was able to do the procedure. I’d almost forgotten how much I’d been dreading it by the time I was finally called. However what they’d also forgotten about was that as I’d not eaten and only supped small amounts of water, my veins had gone into hiding. After virtually passing out whilst they poked around looking for a vein to pass the anaesthetic in, I was eventually asleep and taken in for the procedure. Only 5 hours after arriving for my appointment!

They don’t administer much anaesthetic as you should be in and out quickly and they wanted me to be on my way so they could go home after the busy clinic. So, yes you guessed it, I woke up during the procedure and spent the remaining time looking at the inside of my bowel on the screen and chatting with the consultant. Gosh I’ve got quite a gorgeous (and clean) bowel!

My friend came to collect me shortly after I’d finished my cup of tea and little packet of bourbon biscuits – every NHS appointment should end this way!

Now to wait for the results to see if this helps identify anything with regard to the symptoms I’ve been experiencing.

Honestly, the colonoscopy was a little uncomfortable but not painful at all. So DON’T you be one of the 10-20% of patients that don’t turn up for your appointment!

Colonoscopy NOT!

For many months I’ve been experiencing a lot of pain in my abdomen, swelling that comes and goes but is excruciatingly painful, headaches and dreadful nausea. There’s also been blood in my wee and also blood in my poo. Sorry if it’s too much information, just thought it was about time I was honest with you (as always).

I’ve been to the doctors several times and have been told it’s nothing to worry about. Then finally I was referred ‘urgently’ for a colonoscopy… several months ago! Fed up with waiting for this urgent appointment, in pain and worried, I’ve been chasing it up. Honestly apart from the pain and symptoms which have been pretty grim, it’s also painful, makes me tired and tearful.

Today didn’t help much. I had received a letter saying the appointment was today. I drove myself to the hospital to discover that I didn’t have an appointment. That they hadn’t sent me the prep to clear my bowel and that I also needed someone else to take me home as I’d be having anaesthetic. Oh and that I wouldn’t receive the procedure at this hospital anyway. Can’t tell you how fed up I am today.

I just want to find out what the blinking bananas is going on with my body.. it’s getting worse!


Through my own experiences and sharing with others, I realised that ‘surviving’ after a cancer diagnosis is far more than regular checks and/or medication.  There is a huge emotional and psychological impact, there’s a new need to cope with hearing those words ‘you have cancer’, a re-evaluation, a recognition that procrastination no longer has a place in our lives and an eagerness to live, to thrive and to survive.  I say that not to be glib or assume that it is easy either.  For many the ‘reality’ hits us like a ten-tonne truck often at the strangest of times and may even be quite some time after diagnosis or triggered by something random.

For me, I realised the impact for the first time had been when leaving the hospital after the ‘follow-up’ appointment after my second surgery.  I heard the swoosh of the first set of glass doors close behind me as I exited the hospital with my friend and then the swoosh of the second set of glass doors opening ahead.  We both stopped mid-door and my friend turned to me and said ‘Do you feel like you’ve been dumped?’.   She had managed to verbalise exactly how I felt.  I felt as if a partner had just walked out of my life and with whom I’d relied for an intense but short period of my life (surgeries and treatment).   I felt alone.   I nodded and we walked through the second set of glass doors to the car and drove home in silence.

I should have felt elated, shouldn’t I?  I mean they were ‘dumping me’ because I was done for now.  OK so I had regular checks in the diary for follow up scans and there was still the discussion as to whether radiation would be required… but essentially, they were saying I was doing OK.  I should have felt good.  I should have been smiling and laughing and celebrating.  Instead it was an overwhelming fear and grief that consumed me.

When eventually I went to my own house, I remember feeling even more isolated (and yes I really did live on a remote farm cottage overlooking fields!).  I also remember spending hours on the internet, mostly in tears, desperately searching for answers.  Or staying in bed as long as I possibly could trying to avoid the day… but never straying too far from a box of tissues.  I felt as if I was never going to stop crying and I didn’t really understand why.  After all I had had two surgeries.  My surgeon felt he had got the tumour and sufficient margins.  So what was I grieving?

I think with hindsight I also felt guilty.  Why had I come through it all?  Why was I different?

National Rare Cancer Conference

Since my foray with cancer I have done exactly what many of you would have expected me to… try to really understand more about Phyllodes, to ensure that there is some education on the part of the medics and the NHS, an acknowledgement that although rare, we do exist and also (really unsurprising bit) to put myself forward for posts whereby my voice can be heard and, I hope, make a difference for anyone else entering the world of cancer.

Through the South West London Cancer Network Partnership I was invited to attend the National Rare Cancer Conference today.  It doesn’t cease to amaze me that I learn yet more at each event I attend and sadly that I sat amongst people who had been diagnosed with equally rare cancers and the frustrations that this lack of knowledge leads to for a patient.

Some quick facts that I learnt:

In 2007 in the UK approximately 300,000 people were diagnosed with cancer.
In 2007 in the UK approximately 140,000 people were diagnosed with a rare cancer.

Approximately 50 in every 100,000 people are living with a rare cancer in the UK.

Sir Mike Richards (National Director, National Cancer Action Team) was speaking at the event and asked us to consider a few questions:

1/  What is a rare cancer?
2/  What are the outcomes for patients with rarer cancers?
3/  What would you want to see in a Cancer Reform Strategy ‘refresh’?

Ray Murphy (National Cancer Partnership Forum) used this phrase, which I just love and struck a huge great big bell for me… “Add years to life and where we can’t, we should add life to years”.

We also heard from Andrew Wilson, Chief Executive of the Rarer Cancers Foundation and from Simon Davies, Executive Director of Cancer52 (so called because 52% of the UK cancer deaths are from the less common cancers).

We discussed how we could increase awareness to some of the rarer cancers, perhaps therefore ensure that people are referred tested and diagnosed earlier. We discussed an equality of care and how this can be improved. We talked about where we felt tests, diagnosis, treatment and post treatment areas can be improved. The most distinct area that we felt needed improving was communication and sharing of information between medical groups and also with the patient. An informed patient is, mostly, a happier patient and an empowered patient.

We were also told of a wonderful new resource available to doctors and patients. Information pathways for differing cancers.  The information is constantly being reviewed and updated however there is already a great deal of information available at  NCAT Pathways.  You can look and download pertinent information and locate resources and support in your area. I suggest that if you come across a great service in your area you urge them to contact National Cancer Action Trust to be listed. All good resources deserves referral!

Personally I discovered there are many many rare cancers and then there are rarer cancers. It struck me just how rare phyllodes is and how those diagnosed are simply rarer than rare! However no matter how rare a cancer is, there should be a resource, specialist or information available. I’m on it!

Everyone I spoke to about Phyllodes and my experience was shocked that I hadn’t been referred to a sarcoma specialist.. apparently this should be done with any sarcoma diagnosis in order to obtain the best possible care and follow up…. and of course raise awareness that there’s yet another case of Phyllodes out there!

Paula Lloyd, Associate Director of the National Cancer Action Team spoke very well in summary of our discussion feedback but also provided us with an update on progress within the NHS and the Govt for understanding and improvements for those diagnosed with rare or rarer cancers.

My summary of the event was that there were most definately frustrations amongst people diagnosed with different rare cancers.  Lack of information, resources and support is paramount.  In addition, the lack of ‘joined up writing’ between the medical arms involved – why shouldn’t anyone involved in patient care have access to the information via technology?  It’s insane that letters are typed, put in envelopes, stamped and posted to our GPs and that nurses and cancer care specialists don’t have the information at all.  This means that everytime a patient meets someone new they have to repeat their story which can be emotional, tiring and perhaps misleading as the patient may not verbalise important facts that perhaps they hadn’t understood or were too much like medical speak.

However all that said, the people attending the conference are amongst the strongest, most inspirational and amazing people.  Mostly they don’t have an axe to grind or a whinge to air but simply want to make it all better for anyone else.  They have and do live with the most unusual symptoms and pains to live with but the loudest sounds in the room were from laughter and looking around smiles.  Amazing.

I was so bushed by the end of the day that I headed off home (using 3 different buses) and it wasn’t until I reached my front door that I remembered I was meeting friends for drinks… quick change and out again!