thanks mate – I don’t want to sue but I feel like complaining – if that makes sense?

I know all these doctors as I met them on many occasions and they are really genuine and they cared 100% about what happened to Sharon so part of me feels bad for what they will be feeling because they will know inside even if they don’t want to admit it that they let her down badly but at least they can still go home and see their kids at the end of the day.

I’m rambling now. Will go to bed I think. Thanks mate

They did know of the higher risk. Their actions show me they have no idea of the extent of the risk. What was perhaps consoling me and driving me a bit with this campaign up to yesterday was that it was endemic in the NHS but over the past 24 hours it is obvious that this is not the case and many other authorities/trusts are well and truly on the ball with this issue (although i’ve also had many messages from people who are, or know, transplant patients and who let me know they also had no idea. Other people on immuno suppressant meds for other conditions have also said they had no idea of a cancer risk with taking the medication long term. Equally, one or two have said their doctors have drummed into them just how careful they need to be in the sun while on the medication. It’s a complete lottery. Sharon got shit numbers)

Personally, I was convinced she had blood poisoning – that’s how ill she was but it is hard to convey how quickly she deteriorated. I am not a medical professional and my diagnosis was wrong however out of the three doctors that week it seems I was the only one who thought she looked seriously ill. It is apparent as well that the renal doc thought it was an abscess which is what depresses me.

The whole thing is a complete and utter nightmare. What makes it so difficult is late last night when I heard about the person who is treated in Edinburgh and who gets regular skin checks

Know what? I’m also against suing doctors however the last few days have toughened my outlook somewhat.

Sharon got told to **** off when she tried to get life and critical illness insurance when she divulged she would need a transplant at some time in future.

Nationwide put my mortgage ‘on hold’ for three months to allow me to sort finances out, etc. However, ‘on hold’ doesn’t apply to interest which will still accrue.

Tesco Bank would not offer me a payment holiday for two months to allow similar.

Me and my kids have been told to **** off by the government when I applied to them for bereavement benefit and widowed parents’ allowance.

EVERYONE gets their coin – so why should I be different??

Why shouldn’t I therefore try to take the local NHS authority for whatever I can get? It’s a hard world and no **** is going to help my kids so I need to do it

The consultant thought the library image of the SCC was Sharon. That’s how identical they were in appearance.

What I don’t get it that when she got her diagnosis on 19th July (metastatic melanoma) the lesion had been removed the day prior. Sharon told us the doctors were confused by the pathology result because they couldn’t see any sign of melanoma on her skin. The acorn-sized lump removed from her ear 24 hours prior still wasn’t registering. If I was reading this as an outsider i’d be sceptical and would thing the story had been embellished for effect but I promise I have not.

Correct what someone said – if her GP had referred her as an emergency on 2nd July it would have made no difference. However, what if that same GP saw the same thing on someone else the week before and that particular patient had only had it a week?

What about a renal consultant trying to drain it with a syringe? (I know he will be soul searching as he was very fond of her and treated her for years but come on??) My sister is a dental hygienist and when I showed her the pic of a SCC I put up on facebook she looked shocked and said she wished she had seen it on Sharon earlier as she was trained at dental school to look for these as they are frequently found in patients’ mouths. One of her colleagues has a dentist for a husband and she said he always has a look at his patients’ ears for these because they are common as people forget/don’t think to put sun screen on here and because the ears get the sun all the time really.

Unless my google skills are waning, SCCs are the second most common form of skin cancer yet 3 doctors in the space of a week didn’t recognise a large one and a dying woman.

What is making this worse is that I thought this would be the situation across the NHS but it has become obvious it is not and Sharon has been EXTREMELY unlucky as bwaarp said earlier.

Thanks for the information by the way, it is very interesting subject, taking the emotion aside

What is becoming clear is that the level of care and education in the NHS is a complete lottery.

I mentioned about West London and South Wales already. Well, I also got a message from someone I used to know who told her friend my story. Her pal is a transplant patient of 8 years – the same time Sharon had hers. Her pal got told everything and gets regular skin checks. Her medical team are in Edinburgh. Sharon was 40 miles away in Lanarkshire and never got this

Her Dad is worried this will take over my life but I assured him it won’t. Equally, when we were burying her ashes last week I got angry when I watched my daughter talking to the plot on the ground and it comes and goes. Ultimately I know the cancer wasn’t missed on purpose but equally, it’s the second most common skin cancer unless i’m mistaken. If 3 doctors can’t spot that in a woman who was three weeks from death, given her medical history, then honestly…
..well I don’t actually know what to say. I know her renal consultant is devastated and they are putting action into place already to stop it happening again but by the same token – he may be gutted but he can still go home to his family at night. I’m here with two kids and bear in mind Sharon got refused life insurance 11 years ago when she divulged that she would need a transplant at some time in future. Added to that the government won’t pay me bereavement benefit or widowed parent allowance because we weren’t married and it’s hard not to get seriously **** bitter. If no-one will help me then i’ll need to help myself.

But then ten minutes later I feel sympathy for the doctors and then ten minutes after that I feel guilty for not fighting for her more.

No easy answers

Hi Bwaarp.

I sent a picture of a SCC I got from Google Images to Sharon’s Consultant and he replied that it took him a few moments to realise that the picture wasn’t actually of Sharon. However he also confirmed to me that Pathology matched a biopsy of one of her liver cysts to the growth removed from the ear and they identified both as being the same and both as being Melanoma.

The thing on her ear was 100% a SCC. I wish i’d taken a picture of it now but I know if i’d tried she’d have told me to piss off…

thanks project.

At times like these you realise how powerful things like internet forums and facebook can be.

bwaarp – I made a point of stressing at the outset (to the Macmillan nurse and the consultant who treated sharon in her last days*) that this was not about finger-pointing or recriminations because I wanted to get the NHS on side and if I can do one thing it would be to try and make sure no-one ever goes through this again.

*he is not a renal or transplant specialist – she was admitted to the infectious diseases ward and that is why he took her case. She did also have Endocarditis and initially they suspected it had migrated to other organs as they gave her an x-ray and ultrasound within an hour of admission. She got a CT scan within 48 hours which showed lesions in the brain, liver and pancreas. The doctors remained hopeful and said that until they could prove otherwise they were still considering it to be a severe bacterial/fungal infection. She was getting pumped full of I.V. anti-biotics and anti-fungals and after 4 days the level of infection in her blood had halved. What was puzzling the doctors was that she wasn’t getting any better and they had increased her Morphine dose by this time as it was the only thing that was taking the pain away (she’d been taking paracetamol and co-codamol at home – I can’t imagine the agony she must have been in. Looking back I think she knew something was seriously wrong – i’d tried to get her to hospital for about 10 days before she actually got kept in by her renal team but she point blank refused – short of forcing her in an ambulance there was nothing I could do. It was too late by then anyway, she was already at Stage IV)

She also put on a stone in a week, even though she was hardly eating. It was all abdominal fluid. She eventually got enemas and they tried to drain some off but it proved difficult.

I have no issue with how she was treated in those 12 days she was in hospital – they were all first class to a man and woman and many of them were absolutely devastated when she died.

My problem is that there seemed to be a complete lack of awareness beforehand, even within her renal team, of

a. what a squamous cell carcinoma looked like
b. just how ill she was in the week before her admission
c. the lack of education and screening since her transplant.

What is making it harder today is that i’ve already heard from the person in West London and also from someone in South Wales who’s wife is a transplant patient and gets annual dermatology screenings.

I have loads and loads of questions I want answered but probably the most simple yet devastating one is one my daughter asked me last night:

“Why didn’t someone look on the internet before you did?”

I couldn’t say anything

Ben, your mother-in-law’s story sounds EXACTLY like Sharon’s.

On 1st July she felt extremely tired. For a few weeks before it she had been very lethargic and a bit down in the dumps but not in any pain (much to my guilt I thought she was unhappy in our relationship – now I know she was dying). By 24th July she had died. It’s still unbelievable how rapid it all happened. The doctors said they hadn’t seen anything as aggressive for years.

I’m hanging onto the fact that the cancer didn’t get into her transplanted kidney – i’m trying to look at it as a final act of defiance over the disease.

It was Neoral (ciclosporin) She took them twice a day but she also took another one called Mycophenolate and another still, but the name escapes me. She also had Prednisolone which is a steroid treatment I think.

She was on them for 7.5 years mate. 7.5 trouble free years may I add, so as not to scare anyone too much. I’m not blaming the drugs – they are a necessary evil – if that is the right expression.

The Kidney page on the NHS website was last updated in March 2012. It tells transplant patients to wear the highest factor UV protection even on non-sunny days yet on the same page there are two pages of immuno-suppressant side effects listed and not one of them mentions skin cancer (yet the Neoral leaflet says 1 in 10 users will get skin disorders and cancers, although it is a bit hidden away IMHO).

Sounds like you’ve already been told.

Also seems like it is a total lottery whether you are told or not.

I hate the thought I might be scaring people but on reflection, if I had the choice, i’d rather Sharon was being paranoid about being in the sun every day for the rest of her life rather than no longer with us.

Take care.

Maybe to try to be positive for you – when Sharon got her transplant in 2004 there was a woman in the ward who had received a transplant over 20 years prior and who had had no problems with it.

Also, if 1 in 10 cyclosporin users get skin disorders/cancers then that means 90% don’t

hi bwaarp. Just noticed you’d asked another question I hadn’t answered.

The doctor told us about an hour before she died that pathology had decided that the lump removed from her ear was most probably the primary source.

Thinking about it I would have thought it was either a ‘Aye’ or ‘No’, not ‘most probably’ but then i don’t know about biology and how easy it is, or otherwise, to identify such things.

There was certainly nothing noticeable on her body. In fact, looking back it seems quite surreal. When she told us she had liver cancer she said that what was confusing the doctors was that it was a skin cancer but they couldn’t find the primary source anywhere on her body. Strangely she had this growth on her ear so even at that time it couldn’t have looked like any canceroous growth any of them had ever seen.

I find it really bizarre. If I was reading this i’d think the person writing it was making it all up. I can promise you on my life that I am not.

and the DWP bereavement benefits criteria are the icing on the cake

Hi, it was diagnosed as a metastatic malignant melanoma. When I was scouring the net it didn’t look like any melanoma I could find pictures of. It looked identical to what you mentioned – a squamous cell carcinoma. In fact, somewhat poignantly, the picture I found of one (in American patient literature dating from 2008) was even in the exact place on the person’s ear that it was on Sharon’s.

P.S. I am not wanting this to sound like a bitter rant against the drugs. Without them you are dead if you need a heart or liver transplant, etc. With the kidney you do have the fallback option of dialysis however, like you say, a life on dialysis is not good. I know 100% that if Sharon had been told she had an 80 or 90% chance of getting skin cancer she still would have had the transplant – no doubt in my mind. The information on the drugs is quite simply not good enough. It probably meets the legal need for the company to notify people but morally i’d say it’s suspect.

Sharon was told once in 2003 – pre-op – that the downside would be she would be at a ‘bit of a higher risk of certain types of cancer’.

That was it.

I would think that ‘a bit higher’ is the understatement of the century.

I have been told anecdotally by a neighbour who’s wife works in another hospital up here as a senior cardiac nurse that when she told the cardiologists the story last week at a team meeting they just looked at each other and started googling there and then on their laptops. At which point they basically said, “this is serious”.

I don’t know what the hell has happened up here. I got a message from a guy at West London Kidney Patients Society telling me that it is drummed into them from day one and has been for the past ten years.

Very angry.

thanks. Back at work yesterday. Daughter back to school yesterday – quite hard that.

Financial stuff is a difficult process – have been denied bereavement benefit and widowed parent allowance because we weren’t married. Even though we lived together 11 years and have two kids who took my name, we both worked fulltime over that period and didn’t claim any other benefit (other than child benefit and for a time we got working tax credit but that stopped a few years ago)it doesn’t count for owt in the eyes of the Government because we didn’t have a piece of paper making it official.

Let that be a cautionary tale to anyone with a partner and kids who is unmarried to their partner. I am lucky, I have family to help with childcare and a very flexible employer, plus I earn a decent salary. Even at that things will still be quite tight but other people may not be as lucky, if lucky is the right word.

thanks. the debt is in my name but i’m good at being a pain in the arse. my partner would have vouched forhat. i haven’t finished with tesco yet.

thank you.

went to see Nationwide today and they couldnt have beem more helpful. They saytheir policy in such situations is an automatic hold being placed on te mortgage for three months. this is different from a payment break and wont show on my credit record. if, in two moths i think i am going to struggle they said to.come into te.branch and they will make.something fit for me. very impressed withtheir attitude.and their manner.

also dealt with.local.council, dept of work and pensions and job centre plus. they all.went out of their.way to help me as.much as they.could.

tesco bank on the other hand…

i asked for a paymet break.for a.couple of months until i sort benefits, pension value and childcarecosts out etc. they declined. the best they offered was eithertemporary reduced payments or to allow meto miss one or two payments without bombarding me with letters. howevr i would subsequentl needto make up the reduced value or missed payments bythe end of the original loan period orelse it would be classed as adefault.

thanks. i will do it. i was just having a low moment earlier. again, thank you

thanks. my neighbour looks after 2.kids on his own on 25k so i will do it but i dont know how yet. i’m in a bubble. the funeral was keeping me focussed on making it perfect for her but now it’s done. she was only 37. she was a very good person. it was standing room only yesterday.and we raised over 1500 quid for charity which made me feel good. but as i say, reality is slowly sinking in. i have thought of a payment holiday just so i can get sorted. will go to branch tomorrow to speak wih lender. she went trough so much to have our kids. women with her kidney problem.dont usually become pregnant. she gave us two beautiful kids okus in between she had kidney dialysis and then a transplant in 2004. her mum was the donor for her. she was some woman. cant believe she has gone. she went though so much but athe end just abouthe only organ not affected.with cancer was her new kidney which was her last act of defiance against he disease. thats how i liketo see it anyway. sorry for rambling no one on here knows.me or knew.her.but i feel like tellingandom people.about her for somereason. i know it wont make any difference to what ha happened

p.s. I got the book for around 3 quid off ebay – can’t go wrong

I went from doing 25m and nearly passing out to being able to do 60+ lengths in the space of three one hour visits to the pool on the back of reading about the TI principles and trying to implement them – this was before I bought the book.

Don’t get me wrong – I am around 40-50 seconds per 25m and my stroke count is around 23-25 when I first start off, dropping to around 28 as I get tired – but the point is, I could hardly do one length before reading up on TI.

Miraculous. The superman drills are helping with my balance as well as my legs sink like a stone. I love swimming now whereas previously I couldn’t think of anything worse.

Need to check out swim smooth – never heard of that one.

you need to be able to forgive her for what you perceive are her imperfections and transgressions. By transgressions I don’t mean she has been unfaithful, etc. rather, perhaps you feel she doesn’t feel the same about you as she once did or you resent her easily, example being the car bump.

It’s possible she feels the same way about you i.e. that you don’t feel the same, etc. and the way both of you are expressing it is to come to loggerheads all the time.

I think the above suggestion is a good one i.e. buy flowers, say you are glad she is ok, etc. After all, i’m sure she didn’t crash the car to annoy you. Think about how bad it makes her feel – perhaps she feels bad that it has caused another financial burden and then you having a go at her isn’t going to help.

Easy to say, perhaps harder to swallow pride and do. I’ve been in a similar situation when my daughter was a similar age and we were so close to ending things but we didn’t and i’m glad we didn’t as my daughter is 9 now and we also have an 18 month old son and the two of them bring us great joy and happiness. Not saying we don’t have slight ups and downs but 99% of the time things are good.

You have to let go what you feel wronged about though. That was the only way I could go forward. That is what worked for me – your situation may be different but hope it helps somewhat

most of those suggestions are unsuitable for an 8 year old.

The World at War is best kept for a few years down the line as well I reckon.

I would let her read Going Solo by Roald Dahl. It is a very good account of his life in the war as an RAF pilot.

There was a recent BBC docu-drama called into the blue (or something similar) about the Battle of Britain and the stress it put on the pilots.

D-Day to Berlin was a good series and not as graphic as the world at war, I don’t think

I did Mabie red route on my cx bike with 35mm tyres. Coped with it all fine however it took away some of the fun on the rootier parts plus by the end my wrists were agony and the next day I felt sore all over.

Personally I doubt if i’d do it again. If your road bike is titanium then flog it for a decent price and pick up a cheap cx frameset and swap your components over. Might have enough left to part fund a 29-er as well?

there is a trail, apparently, at the bottom of deliverance that goes down towards innerleithen.

In Kenny Wilson’s mtb scotland book it is shown as the Gypsy Glen route I think.

Sorry I don’t know much more than that

send it back for sure. If you check the Cervelo forum you will see this is a common issue on S1.

That’s outrageous – there is no way the seller could not have known about that.

poor man. awful to read something like this. thank you for posting a link to his blog. like many I didn’t know the chap but I know what it’s like to feel so low.

rest in peace sir

Balloon
Clown
Dafty
Dunderheid
Welly
Jedhead

Together 8 years in July and with 2 kids. I’d like the opportunity to try to cope with oral sex!

you need to become a bit more flexible matey. practice bending from the waist 10 minutes a day and in a few weeks you’ll get all the BJs you want :-p

Let’s look at this from a low hanging fruit perspective.

It’s all about the triple bottom line

Where there’s a risk, there’s an opportunity

The above all said at a meeting which I naturally had to note down.

The one that really annoys me now which seemed to start with David Cameron but all politicians and now seemingly every tom, dick and harry being interviewed now use is “Let’s be clear…” before spouting off some bullshit lies

interesting that the SSRI worked well for you at the beginning but you felt it wore off.

Can I ask how long you persevered with the return of you anxious feelings before switching to another medication?

The reason I ask is that, in my experience, I can overdo things which can trigger off ‘setbacks’ in my anxiety. i.e. it’s not necessarily that the medication doesn’t work as well anymore, rather i’ve not been looking after myself properly.

Alcohol in too large a quantity combined with, say, a hard weekend on the bike and perhaps a couple of nights poor sleep can exacerbate things for me.

Each one of those things on their own probably wouldn’t have any effect on me but the combination of all two or three can cause me to have a bad 5-7 days.

restaurants in the park can be hit and miss and very expensive.

Two exceptions were Annettes (Happy Days burger style joint – dear but very nice and very large portions) and a buffet restaurant themed on Ratatouille where Remy the Rat comes out during dinner to greet the kids. The food at the buffet was very nice and about 25 euros for an adult but eat as much as you want and actually a huge selection. Was the only one I felt like i’d had a proper meal. It’s behind the Aerosmith rock n roller coaster.

If you are driving there is a 4star campsite about an hour or so away called Berny Riviere which probably does really cheap out of season deals for a couple of nights.

Added bonus of that site is (if you are a history buff) you can pretty much follow the line of the Western Front all the way back to the ferry if you avoid main roads. Quite an eyeopener the number of cemeteries along the way. The magnitude of it really hits you

if you haven’t done wolftrax then it’d be criminal not to, IMHO, if you are up that way. The Black route in particular is magnificent

Derek, I can thoroughly recommend The Power Of Your Sub-conscious Mind by Joesph Murphy.

Honestly was a revelation for me. Along with Dr Claire Weekes, these two authors took a huge element of fear away from my anxiety which was very similar to yours. My thoughts were different however my life was being ruined by repetitive irrational thoughts and fears from which I couldn’t divert my attention.

I know the flippant answers here are perhaps trying to make you lighten up but if you haven’t gone through a bad or severe anxiety disorder you can have no idea how unhelpful that sort of thing can be.

As for ‘snap out of it’ do you think the guy really wants to be asking for help like this on a cycling forum? Don’t you think if he could snap out of it he would?

The ironic thing is derek you can ‘snap out of it’ – you just need to be shown the way how. Also, ‘snap’ as in a click of the fingers – well that ain’t gonna happen, it will take some time but you will notice improvements over days and weeks and then all of a sudden you may find yourself thinking ‘I haven’t had one of those thoughts for a while’ or ‘I’m not actually constantly checking how I feel today’. That’s when you know you are on the road to recovery.

One of the hardest things with anxiety is having faith that you will recover.

Derek, you can recover and believe you me, if I can do it from where I was then anyone can.

Never give up but accept there isn’t a magic bullet either. I spent about a year scouring the internet looking for a miracle cure and tried all sorts.

My cure came from knowledge and understanding of what was happening to me. Until then, no GP or mental health professional had adequately explained that what was happening to me was simply anxiety and was not the sign of a deeper rooted mental illness or weakness in my character. It’s not your thought of sudden death that is the problem, it is your body’s reaction to it which is causing your trouble.

What you need to learn to do is to accept that for the time being you will continue to react in the same way to these thoughts as it has become your habit to do so. However, with practice and a new perspective which you can get with understanding of what is actually happening to your body – you can start to turn things around.

Anti-depressants also helped me and took away the worst of the symptoms but didn’t do away with them completely. The real salvation for me was actually understanding what was wrong with me and realising that I had to work with what I had and that if I did, I would get better.

Honestly can’t recommend those two authors enough. If i’d found them years ago i’m certain I could have saved years of fear and worry.

Good luck.

23 years is a long time but if i can recall rightly I don’t remember the police coming in for stick until much later. Certainly, a senior policeman saying drunken fans were to blame four days after the event wasn’t exactly a controversial thing to say at that time, was it?

I think that was at the time a view held by a lot of people so I don’t see the point in trying to make it something it’s not, which I felt BBC were possibly doing. I listened to Radio 4 at lunchtime and they devoted around 30 minutes to it on the news.

I don’t really see why the BBC are trying to create a story here?

Surely no-one can honestly claim to be surprised that the police would have said that 4 days after it happened?

Would be different if the chief of police in merseyside came out last week and said it.

Oh, the St Mirren fans seemed to take great delight in singing derogatory songs about both sides of the Old Firm (and Morton, lol!)

I went with a mate for the banter – St Mirren were just back up in the SPL that year and he bought a season ticket. I’m an Aberdeen fan but went along for the banter and the swally 🙂 Happy days – expensive! – but happy! Love Street was a great wee ground. Imagine the new ground has about as much character as all these other new stadiums which look the same.

Broadwood being a case in point – that must be the coldest place outside the Arctic Circle 😮

Have to admit I thought Lawell’s statement about Salmond was pretty transparent as well. He should be a politician lol!

P.S. anyone remember how much it cost, roughly to go and watch the Premier League in 1985 and how that compares to nowadays?

Have found that approx. average salary in 1985 in the UK was around £9k. Figure for 2011 is around £25k. Would be interesting to see how the cost of going to a game has risen by way of comparison.

Last SPL game I went to was in Autumn 2000 to Love Street and it was £15 to pay in. Am I right in thinking away fans pay around 27 quid to get into Celtic Park these days?

Echo Total Immersion by Terry Laughlan.

I struggled to swim one length a month ago – knackered by the end of it – punters would be throwing their washing in the pool to take advantage of the amount of churn I created in the water.

I read about the principles of Total Immersion and went up to the local 25m pool and did 50 lengths with around 40 seconds per length and a 10-20 second rest between each length.

A week later I did 60 lengths non-stop. It probably took me 50 minutes but it is amazing considering I couldn’t swim two lengths non-stop without nearly fainting just a couple of weeks before.

My stroke count for 25m is 23-24 when I first start off but drops to around 26-28 at the end of those 60 lengths.

That’s before I’ve tried any of Terry’s balance drills – it was just trying to follow the principles and slow everything down.

It’s made me go from hating swimming to really enjoying it – something I never ever thought i’d say.

Target is to get down to sub-20 stroke count per length and then start thinking about times.

I know my legs hang terribly in the water so the balance exercises will help.

Don’t know if that’s of any help lol!

haven’t ridden any of the trail centres outside of Scotland but honestly don’t get the negativity about Ae and Kirroughtree??

Can see why some people may be a bit underwhelmed with Dalbeattie as it is not like Glentress type stuff in that there isn’t much bmx type swoopy downhill sections (at least there wasn’t when I was there a few years ago) and there is quite a bit fo fireroad but even still I enjoyed it.

seems like folks should be doing uplift days so they can just ride downhill all the time??

great video – if you think that was muddy you should have seen the week before 😉