Visitors since 20 January 2010

Wednesday, 7 July 2010

Last Week X-rays - Tomorrow Lemon Drinks

A week ago I had a chest x-ray and I have now got the results – very much as we expected although the growth rate seems huge – a 25% increase in size in two months - anyway the report said.........

Comparison made with previous examination dated 16 April 2010. The largest deposit is situated in the left chest and this has a maximum diameter of 15 cm. This was previously 12 cm two months ago therefore significant volume increase has occurred.
The other metastatic deposits in the right hemithorax have increased to a similar degree.
Pleural spaces clear. No bone lesions visible

My understanding is that the growths are cannonball shaped with a bit of distortion to fit into places.

I feel better today than I have felt for some time and was pleased when I took Jack all the way round Sewell Park without stopping for a rest – a long time since I have done that! I also had my first cup of coffee for a few weeks – it tasted very odd, I’ll get used to the taste again I suppose but what a strange thing to drink......

Being ill, scarily so for a week, lends itself to introspection and thinking about one’s life. I think that I can truthfully say that after the age of 16 – when I left school which I hated and was bored by – I have had a really good life but, the last 13 years have been the best of all – thank you “G”. Long may it continue as we bicker, laugh and love our ways through the days

Tomorrow a CT thorax, abdomen and pelvis scan, which means a disgusting lemon flavoured drink and being canalized.

Tuesday, 29 June 2010

Turning to the Pink Side

I was called into hospital to try to sort out the gall stones that were turning me a strong and strange custard colour on Monday 21st June for a day surgery “Procedure” – little did I know that said “procedure” involved pushing a Swiss army knife – with all the tools – down my throat. But I’m getting ahead of myself first off there was a “bloods” session and the outcome of that was that my blood was not clotting well – my INR was 1.7 - and outside the parameters for carrying out the “procedure” so I was given an injection of vitamin “K” and moved to the last in line for the “procedure”.......... The vitamin K had little or no effect on my INR and so towards the late afternoon the “Procedure” was carried out and most unpleasant it was too! But they didn’t find any gall stones – most odd ‘cos they had previously shown up on MRI scans and Ultra Sound scans but they did find a duct which was restricted in size and that had a stent put in it. I was then moved to the ward where I spent the night and was discharged on the afternoon of the next day.

Talking to the consultant, because of the missing gallstones and because of the INR being 1.7 the “procedure “ as planned was not carried out – I am now due to have an MRI scan in the next 2 or 3 weeks and a decision will be made then as to what to do next.

When I first turned yellow everyone jumped to the conclusion that it was related to the cancer – had it been that the outcome would have been a lot sadder than it is....... Now I am turning pink again and I feel well always fatigued though but I guess that I just have to live with that.

Friday, 18 June 2010

Custard and the ERCP

Well I am now a deep custard colour. Anyway yesterday the results for the scan were in and it’s good news – the jaundice is unconnected with the cancer and I have gall stones. I’m now waiting to hear when they can be treated but hopefully it will be the beginning of next week – the procedure is ERCP and will involve a couple of days or so in hospital.

It seems strange that we are pleased that I have gall stones – but the alternatives are too horrible to contemplate.

Monday, 14 June 2010

A Quick Update

I will be having an ultra sound scan on Wednesday the 16th and a visit with Dr "KS" on Thursday the 17th for the results and decisions on what to do next

Saturday, 12 June 2010

Black Eyes, Lemon Skin and Red Urine

I woke up this morning with a black-eye – and I have absolutely no idea how I got it! But with a bit of surfing I think it’s related to the eye test I had last Wednesday at the diabetics clinic – With my glasses on and holding a shield in front of my eyes – at least that’s the only reason I can think of. It’s a real shiner!

I have been trying drinking beetroot juice – someone told me that it boosted energy levels. I don’t know about that but it does make your urine a most alarming colour.

Other stuff is not so good – as my General Practitioner – Dr. RB – put it - we have had a long plateau where nothing much has changed and now we have our first setbacks (and I love that he’s saying we!)........... Anyway

On Monday I saw Dr KS at Pricilla Bacon Lodge – she’s the palliative care specialist and everything was much the same as the last time that I saw her – we adjusted the “meds” a bit but there was nothing new really.

On Wednesday I had an appointment for my annual Diabetics Clinic check up and everything was well there – except that I was feeling really ill and I mean really ill – exhausted, nauseous and just plain ill. About the third sentence that the Doctor said to me was “What treatment are you getting for the Jaundice?” , I said that I didn’t have jaundice and he said that he could see it in my eyes and that my skin was lemon yellow.......

On Thursday I had some bloods done and on Friday I rang my GP Dr. RB – he looked at my bloods and confirmed that I was jaundiced – presumably from the liver metastasis. There were other phone calls and the upshot is that Dr. KS is trying to arrange an emergency liver scan so we can see what is happening – once we know that then we know what the way forward is....

I very nearly asked Gavin to walk Jack this morning – I’m still feeling rough – but I’m very glad that I didn’t – it was a lovely morning - and we saw Peter and his dog Flash – Peter asked if I had been on the sunbed and I had to tell him that my new lemon colouring was due to Jaundice – which I thought was funny – then he noticed my black-eye!

Monday, 17 May 2010

Do Not Go Gentle Into That Good Night,

Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.

This has turned into a feeling sorry for myself blog and I don’t like that, but having written it I feel it is more honest to post it than not post it.

Something I notice about myself is that I make a huge effort to be cheerful, funny, out-going and “well” when I’m with other people – I suppose it’s natural to put on a “Brave Face” but it does take a huge effort at the time when I’m doing it and it gives people the wrong idea of what I feel like inside.

It’s the general lack of energy I blame for not keeping this blog far more up to date – at least that’s my excuse... It is true though that the feeling of tiredness and fatigue is will sapping. Yesterday morning some good friends rang and asked us over for a coffee – my initial reaction was to put them off – I was sitting on the settee and feeling lifeless but Gavin so obviously wanted to go that I changed my mind and I am really pleased that I did as I had a really enjoyable time. But I do this a lot – whereas I used to do things on the spur of the moment now I have to build up to them.... and I think I hate being in that position – then there is a general tiredness that sends me off to bed after lunch and almost before the BBC News has finished in the evening – I really want to be a grown-up again and to stay up until eleven o’clock at night.

As for eating – it’s an effort to eat anything at all and the thought of most things seem to make me nauseous .......... – but I am just not hungry.

This is a very short update – and I know that I have many things to be grateful for, not least being my partner Gavin and my friends and family who give me so much support but it is difficult to “rage against the dying of the light” when one feels tired, nauseous and wants to weep.

Monday, 26 April 2010

Counting Coup and Nothing To Say

Well I am counting coup - it's my birthday in a couple of days. I haven’t updated for some time – perhaps because there isn’t much to say. The illness rolls gently on – probably becoming more severe but held in check by drugs and the care of the Doctors and Nurses – and of course and even more so the care and concern of family and friends. During the month since the last update I have seen both Dr. “KS” and Dr. “RB” and talked with nurse “LH” – Strangely the Father of one of my near neighbours was also cared for by Macmillan Nurse “LH” and they – like us have nothing but good to say of her. It was indeed the same neighbour who told me off for not updating and so here is the update.

It’s is – I suspect – a bit like being hit over the head with a sand bag. Although I often feel very tired, on a thankfully few occasions, sometimes I suddenly feel so tired that I can hardly move – certainly too tired to fall asleep or to move from chair to bed! It is overwhelming and absolute tiredness, it is a tiredness the like of which I have never felt before and I wish I knew what was causing it. It has to be cancer or drug related I suppose as having tested my blood sugars whilst having an attack I know that it is nothing to do with diabetics. The constant fatigue I feel most days is bad enough but these attacks of extreme fatigue are seriously debilitating...... Another problem is that I don’t really like sleeping – Oh! I sleep alright – more than I have ever slept before but the dreams, always about ships, are becoming weirder and weirder. Not exactly nightmares but unpleasant and every time I sleep.

A couple of weeks ago I was starting to cough more and so Macmillan Nurse “LH” increased my dosage of OxyContin – 15mg night and morning which seems an awful lot to me but apparently is as nothing compared to the dosage some patents are on – and it has once again more or less solved the coughing problem, but does that mean that as time goes on the dosage will slowly increase – there is a bit of good news on the lungs – which if correct makes me wonder why the dosage of OxyContin was increased – anyway I had a chest x-ray on the 16th of April and the report said “Multiple metastases in both lungs but no discernible change since 26.02.10” which is good news and not, in view of the increase in coughing, what I was expecting.

My anti-nausea medicine has also been increased – dosage doubled in fact and that has solved the nausea problem – but I am still not eating all that much – I just don’t seem to be interested in food which for me is a very, very strange symptom.

Nothing much else to report at the moment – It looks like being a nice day and it is good to have the windows open after such a long winter. It’s my birthday very soon on the 28th April and it seems strange that last year Dr Epurescu – my consultant in Medical Oncology – was counting coup that he got me to my last birthday which is why I'm counting coup that I got to this one!

Friday, 26 March 2010

Hospitals, Hotels, Chaves, Lifts and Gay Pride

Yesterday Macmillan Nurse “LH” came to call, both to get a chance of seeing us in our own world and to find out how I was getting on. A most successful visit I think, we both like her and she talks a lot of good sense. She suggested that we should plan some short breaks and to me this sounds a really good idea – just not in the next few weeks – wait until after the school Easter Holidays and then look for a midweek break in Norfolk or Suffolk at a nice country hotel that is also dog friendly. And then there is also London Pride on July 3rd – anyone know of a central London Hotel that’s cheap and has a lift – later in the blog as to why I might need a lift.

And so – we are looking for a dog friendly hotel in Norfolk or Suffolk that does midweek breaks – anyone know of one and a cheap central London Hotel with a lift – again can anyone help?

Anyway and so on........ last night I was just going to bed – and I found the stairs a tad difficult and was puffing as I got undressed, when my heart started to behave very strangely and erratically – this got worse and we called NHS direct who – after a list of symptoms – erratic heart, (and fast) pain in chest - sent for an ambulance.

The medics took an ECG and that showed that my heart was indeed behaving badly and I was loaded up and taken to hospital – by this time though I was feeling much better. Arriving at the Norfolk and Norwich University Hospital the pain in my chest had gone and my heart – by the hospital’s ECG - was behaving normally. By the time that Gavin and Julia had arrived they had followed the ambulance, they said that I was looking better than I had for a couple of days or so – must be all the attention! Anyway after a few hours the decision was reached to send me home – the Doctor checked my “meds” and made us all – Gavin, Julia and I - promise that any re-occurrence and 999 would be dialled!

And so – after a good night’s sleep in our own bed I feel fine! But I am amazed at the behaviour of 20% of the “Great British Public” in Accident and Emergency at the Hospital – these people should be thanking god for the care that the NHS gives them – not being drunken Chaves who my best friend Julia wanted to hit with a shovel – should one have been handy..

I went upstairs just now to speak to Gavin in his den and was surprised how I was panting and puffing when I got to the top and that’s just one floor – that’s why when we do London Pride I am going to need a hotel with a lift – we once stayed on the 7th floor of a hotel in Victoria with no lift – it certainly made you plan when you were going up to your room or down to get something from the shop.

Wednesday, 17 March 2010

“I Don’t Hear You Cough”

“I don’t hear you cough” – That’s what Gavin (pictured) said last night and it’s true that since upgrading my dose of “Oxycodone” to 10mg night and morning I don’t cough very much if at all – well I do if I think about it but otherwise......... A triumph for Dr. “K”. I didn’t realise how bad the coughing was till I was talking to my cousin Tim and his wife Barbara about the it. She remembered me talking on the phone to Tim and she could hear non-stop coughing in the Kitchen from the phone in the Living Room. Thank Goodness that just doesn’t happen now. In fact the non-coughing is so good and as if it never was that I start to think I can stop the “Oxycodone” to see what happens! Probably a bad idea.

Speaking of “Oxycondone” I was reading an article about Heath Ledger at the weekend – “Oxycondone” was one of the prescription drugs that killed him – makes you think! I wonder if I’ll get a posthumous Oscar?

Meanwhile the Fish Shakes are doing what they are supposed to do! I am not sleeping through the day – I don’t feel as tired - and I have stopped losing weight – HURRAH. But my sleeping at night is becoming very erratic, last night I slept like a top – all through the night – but the night before was terrible, awake from 01:00 and finally getting up at 04:00 as I was just lying there.

So – seeing Dr. “RB” very shortly and the bread maker is making dough for fresh rolls for lunch. But after seeing Dr. “RB” and before lunch a trip to Catton Park if the sun stays out. I won’t be walking far – the morning walk up the hill in Sewell Park seems longer and further every day, but Daisy and I will sit in the sun and one of us will have a sniff about whilst Gavin and Jack go for a walk through the spring! A couple of months ago I thought that I was sinking but - thanks to Gavin's support, the support of other friends and family, Medical Treatment and Dr. "K", Dr. "RB" and nurse "LH" that seems to have plateaued. I sometimes feel very, very fortunate.

Wednesday, 10 March 2010

Fish Shakes and Bananas

I had my very, very first ProSure Fishy Milkshake for breakfast today, a banana flavoured one – disappointingly it didn’t taste of Kipper or Mackerel, which “LH” had suggested it might. It didn’t taste much of banana either – just sort of thick yellow flavour – which makes it sound worse than it is and to be honest it’s not bad.

There is a website and that will tell you all about it – including the recipe page although disappointingly there is no mention of Gin there. There also seem to be several flavours mentioned there that I have not heard of – or that seem to be available on prescription “Cafe au Lait” and “Chocolate Fudge” – I have Vanilla and Banana.

Think of me when you are tucking into your Full English tomorrow morning!

Tuesday, 9 March 2010

The Phlebotomist, The Porky Pies, And the Spanish Galleon Under Full Sail!

A few days ago – before seeing Dr “K” yesterday – I went to one of our local hospitals to have blood – it seemed like gallons of it – taken for tests. Whilst there – as it was quiet – the two Phlebotomists were asking me about my treatment and who was looking after me amongst the Macmillan Nurses. I explained that I hadn’t actually met Macmillan Nurse “LH” was taking over but that I was going to meet her when I had my appointment with Dr “K” at Priscilla Bacon Lodge on Monday morning. “Oh” said one of the Phlebotomists , the bouncy one, “I know her, I’ve worked with her. She’ll really nice and you’ll like her a lot”

“That’s good to hear” I said “After all the troubles we’ve had....."

“She’s a very, very tall woman”, the bouncy Phlebotomist said. “And she’s.....” the bouncy Phlebotomist paused and looked at me, “well covered”

“Do you mean fat?” I asked

“Oh no!” said the bouncy Phlebotomist, a bit shocked that I should use the “f” word, “Well covered – she moves like a Spanish Galleon under full sail!”

On Monday Gavin and I were at Priscilla Bacon Lodge at 11:00 for our appointment with Dr “K” and to meet Macmillan Nurse “LH” – waiting quietly in Dr “K’s” consulting room waiting for Dr “K” when a very petite, slim woman came in – “Hello, “She said “I’m “LH””- and we had to explain that we were expecting someone much taller and er...well covered!

The consultation with Dr “K” went well. We first discussed the chest X-Ray which showed the largest growth to be growing at about 1mm a week – scary and it could keep doing that or it could just stop for a bit or – worst case scenario – growth could speed up. There are a lot of other growths in both lungs but Dr. “K” explained that the radiologist usually just report on the largest growth to give an idea what is happening overall.

Then we had a look at the “Bloods” on which there is nothing much out of the ordinary – liver function is a tad abnormal. We know that I have lesions/growths on the liver- that is what was spotted just before my operation some 3 years ago, when the classic comment was made “Your life expectancy is not as other men” – Anyway there is nothing on the “bloods” report to show why I am getting so fatigued.

The four of us – Dr “K”, petite Nurse “LH” Gavin and I, then discussed d what symptoms I had and what was worrying me the most. And so – in no special order – it goes like this.

The cough – this is almost certainly the growths in my lungs setting of the cough reflex – at the time of the consultation I was on three 5mg pills of oxycodone – Hill Billy Heroin – 2 in the morning and one at night – that has now been increased to 2 in the morning and 2 at night.

Breathlessness – I get very out of breath going upstairs or walking any distance but at the moment we decided to do nothing about this – there are drugs and techniques but for the moment I can deal with it.

Constipation/Diarrhoea – it seems funny to link these two but Oxycodone acts to bung me up – too much in the way of laxatives and I have the opposite problem – one is as bad as the other so it’s a matter of me getting the balance right!

Loss of Weight and lack of Interest in food That’s it really I’m not interested in food and I’m loosing weight slowly but steadily. But there may be something that can help!

Fatigue – I get very tired and at the moment it can’t really be treated as we are not sure why and most drugs are contra-indicated by either my diabetes or my heart (which was damaged by the chemotherapy – maybe) ....... Anyway Dr. “K” says that there is a new – Fish Oil based – fortified drink over which there is some interest amongst the Medical fraternity. It has two main effects – firstly to build the patient up and secondly to relieve tiredness. Both Dr “RB” my GP and Dr “K” didn’t think that it was worth prescribing the usual build you up drinks – Complan and the like as they thought that it just stopped you eating a proper diet but this – Fish Oil based drink/food might be a little different. We were concerned that the flavours it came in might be odd – “LH” suggested Mackerel or Kipper flavour – which sounds disgusting; but it turns out they come in strawberry or banana. I’ll be picking up a supply this afternoon and starting on them tomorrow. I’ll let you know how disgusting they taste.

Although it souds strange I am quite fortunate in my symptoms - NO PAIN - although Dr "K" and "LH" said that it could be controled not having pain seems to me to be a GOOD THING!

And so that was our visit to Dr “K” yesterday – Nurse “LH” is great - funny, witty and full of valuable insights. We like her very much. As for my friend the bouncy Phlebotomist – she has had her revenge for me screaming at the top of my voice when she took blood a couple of months ago – just wait till I see her next!!!!

Friday, 5 March 2010

All The Latest X-Ray Results

Last Friday I had my latest chest X-Ray - The results are in! This X-Ray was taken on the 26th of February and is compared to the last X-Ray taken on the 6th of January

The largest pulmonary deposit, situated in the LEFT mid zone, now has a maximum diameter of 11.8 cm (previously 11 cm). The other metastatic deposits in both lungs have also increased in size since the previous examination dated 6th January 2010. Pleural spaces clear. No other features.

I guess that explains why the cough is getting a bit worse but to know more or at least to understand better I shall have to ask Dr. "K" when I see her on Monday, when I will also have some "Bloods" results at the same time - hopefully we can find out why I get so tired. Although right now - at 15:49 - I don't feel tired at all.

Monday, 1 March 2010

The Angel of Death - Replaced!

I have just received a really nice phone call - when I picked up the phone a voice the other end asked if I was Richard or Gavin - "Richard" I said - The voice said - "I'm the replacement Angel of Death!" and laughed. How easy it is to win 5000 points out of a possible 50 from me! It was Macmillan Nurse "LH" and we had a long chat - she offered to visit but the present plan is that we'll meet her when we see Dr "K" next Monday morning and in the end we decided to leave it like that - so next Monday we'll see Dr. "K" and meet Nurse "LH". I'm quite looking forward to it.

Saturday, 27 February 2010

Homoeopathy and Goldfinches

It’s cold. It’s wet. It’s dank. And suddenly the garden is full of spring. Eight goldfinches on the bird feeders at one time yesterday – together with Great Tits, Blue Tits and fierce Robins – on the ground Blackbirds and Thrushes. When I took Jack out, whilst it was just getting light - what a glorious chorus of bird song.

For some time I have wanted to address the phenomena of alternative medicine – but I have been reluctant to do so because many very good friends of mine have suggested various flavours of complementary medicine that they think would help me – homoeopathy, aroma therapy, acupuncture, prayer and many others – these were all suggested honestly and out of compassion and care for me. Then I saw – on another blog – this video and realised how evil the promise of alternative medicine is.

During the journey of Cancer treatment I have been on I have met many, many people who are desperate to find a cure for the incurable and statements such as the ones made in this video by Gemma Hoefkens, that she was cured of cancer by homoeopathy, feed into that desperation.

In case you don’t know homoeopathy is a form of alternative medicine, first proposed by German physician Samuel Hahnemann in 1796, (not 2000 years ago as stated by Hoefkens in the video) that attempts to treat patients with heavily diluted preparations which are claimed to cause effects similar to the symptoms presented. Homoeopathic remedies are prepared by serial dilution with shaking by forceful striking, which homoeopaths term "succussion," after each dilution under the assumption that this increases the effect of the treatment. Homoeopaths call this process "potentization". Dilution continues until none of the original substance remains. For such remedies to have pharmacological effect would violate fundamental principles of science. There is absolutely no scientific evidence that such homoeopathic remedies work beyond the expected placebo effect.

A good example of an homoeopathic remedy would be a popular treatment for the flu - a 200C dilution of duck liver, marketed under the name Oscillococcinum. As there are only about 1080 atoms in the entire observable universe, a dilution of one molecule in the observable universe would be about 40C. Oscillococcinum would thus require 10320 more universes to simply have one molecule in the final substance.

It should be very easy to test if any of the alternative therapies work – take two thousand people suffering from the target disease treat a thousand of them with the alternative therapy and give the other thousand a placebo – then after a suitable period of time compare the two groups. The same could be done with any alternative therapy and indeed prayer.

There is one area where alternative medicine scores heavily over conventional, evidence based medicine. Alternative practitioners spend a great deal of time with their patents and that in itself may well help the healing or curative process and is something that conventional practitioners, Doctors and Nurses, could well consider bringing into their own medical practices.

Wednesday, 24 February 2010

Telling it Like It Is!

Yesterday there was an article in “The Independent” – “'It's terminal': How to break bad news” and it was about how so many Doctors fail to give the “bad news” in a proper and caring manner. Certainly for us this was true. When we had the “Bad News” interview in November 2006 – Dr “E” the Oncologist was very, very blunt – and strangely I have absolutely no problem with this – I don’t want false hope raised and I do want the opportunity and time to ask questions. This we had. We were also told that I could have chemotherapy in two versions – a mild one which would give me a life expectation of around 3 to 6 months or very aggressive chemotherapy which would give me a life expectation of around 6 months to a year. I took the latter.

My objection was that when our consultation was over we were offered absolutely no support – in an ideal world we should have been given a private room to sit in for a little, whilst we adjusted to this horrendous news; and even better we should have been offered a cup of tea and someone to sit with us and help us understand. Instead, at 5 o'clock at night, we wandered out into a rainy November car park and sat in the car and wept.

Tuesday, 23 February 2010

A Normal Day – HURRAH!

At last – and the first since Thursday – A Normal Day! - Up while the sky is dark and empty the dishwasher, read emails and take my “morning meds” . Then out with Jack for a walk – poor Daisy has to stay at home as her hips are gone and although she can make it round the garden she can’t really go much further. She seems happy enough and rules Jack with a paw of steel though. Anyway, Jack and I only have a short walk as it’s snowing and I don’t enjoy it very much. Then home for breakfast – muesli, tomato juice and a nice pot of tea.

By this time emails are pouring in – these are from people who were at my old School, as was Clive Woodward who – on Desert Island Discs - referred to the school as a nasty cruel place. Well I’m with Clive Woodward – I think that the school was a nasty cruel place and with very poor educational standards too. The only good thing I can find to say of it was that it was in the village of Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch and I expect that there are not many people who got that name into a blog today. Anyway lots of emails from people on both sides of the divide. I really find it quite surprising how many see the school as “Mother” to whom they owe everything.

Dr."K" rang - just to see how I was and to find out how I was getting on with the pill version of "Oxynorm" - I tell her OK but that Gavin thinks that I am coughing more now. Anyway we have agree that I will have bloods and a chest X-Ray before I see her on March 8th.

Then Tesco delivers - the usual bizarre substitutions which I reject. Gavin is giving Jack his lunchtime walk and it's still snowing but not settling.

Moving on to lunch – half a ripe avocado pear squashed onto two rounds of hot buttered toast with the other half of the avocado pear blended with a pint of milk and magic “Splenda” not sugar. (I am a diabetic after all.) After lunch I would normally go to bed but decided not to and spent the afternoon writing bad tempered emails about School!

In the evening I watch the news on television and have my tea – I leave some – just too much I’m afraid but nice – a “Quorn” pepper steak with new potatoes and green beans followed by stewed apple and cream.

And so to bed and a good night’s sleep at 19:00.

A normal day, and it might sound dull but it was wonderful and the more so as it was shared with Gavin and the dogs. There is no better sort of day. - HURRAH – may there be many more.

Monday, 22 February 2010

Now Where Are My Marbles

I blame the “Oxynorm” – it can’t be age as it is a well known truth that there are no gay men over the age of 50 and so I am 49 years old and have been for some 14 years! Any way, recently – since I started the “Oxynorm” – I become convinced that I have done something, and can remember in detail doing it – but then it turns out I haven’t done it at all. Now when it’s cucumbers I believe I have ordered from Tesco for the weekly delivery that’s one thing, but it’s something else when I am convinced that I have ordered flowers for Gavin to be delivered the morning of Saturday the 13th in time for Valentine ’s Day. When they don’t arrive I start checking and I haven’t made the order – even though I clearly remember doing so and even recollect looking at the emailed receipt! Now where did I put my marbles!

Since we went out to lunch with my cousins on Thursday I haven’t been very well, nausea, giddiness, fatigue and not wanting to eat – however, having spent a lot of yesterday in bed I realised that not eating was stupid and would make me sicker – so bearing in mind my promise to Gavin and Dr “RB” that I would eat, at 19:00 hours downstairs I came and had a bowl of muesli and two slices of toast and Marmite. I didn’t feel much better after having it but I did feel .... well I suppose ..... self-satisfied and pleased with myself.

Saturday, 20 February 2010

Lunch in Posh Places

I have already blogged about our visit to Dr. “RB” on Thursday morning – but that was only the start of the day. Soon after we got home Cousin “PC” and his wife ”RC” arrived from Canterbury. After coffee and chatter we went with them to the Caistor Hall Hotel just outside of Norwich where they were staying. Usually the food is excellent - although we have been disappointed in the past at Dinner Dances when the tables were pushed much to closely together, but for Gavin and I it's a romantic destination as it is here where held our Civil Partnership on May 18 2007. (By the way Macmillan Nurse "D" was among the guests - see if you can spot him in the photo book that the last link points to)

We had a most delightful lunch - the food was excellent - Gavin and I are both vegetarians and frequently vegetarian food in non-specialist restaurants is horrible - but not in this case - Gavin had "Roasted Celeriac with Wild Mushrooms, Parmesan Crisp and dressed leaves" followed by "Goats Cheese Potato Gnocchi with Basil Oil and toasted Walnuts" which he really enjoyed. I had "Pan Fried Goats Cheese,with a caramelised Pear, walnut and watercress salad" followed by "Wild Mushroom and leek Pithiver, with a shallot,herb and sherry creams sauce, and a dressed salad" and yes I didn't know what a Pithiver was and had to ask - but it turns out to be a sort of pastry disk. My main course was a little rich for me but non the less delicious! For the first time and about an hour before we arrived at the hotel I took some liquid OxyNorm as well as the capsules I had already taken - I had been told that I could do this but I do suspect that my table conversation was perhaps a little fuzzy, inappropriate and non-stop!

Home at about 2;30 and then I spent the rest of the day sleeping - firstly on the couch and latterly, from about 6 pm, in my bed. In fact I really didn't feel well at all from about 4 o'clock onwards - I think that this is a price I shall have to pay any time I go out or do something and it's about tiring myself. A visit to the Doctor AND lunch with my friends, cousins and partner was too much. But we had a great time.

Moving the Goal Posts

I was paid a great compliment the recently by one of my cousins – “JM” - he said that he enjoyed reading the blog because it told him what to expect if he got cancer but – and – here comes the compliment “There is an underlying sense of a life well lived”. Thank you “JM”

Now I plan to move the goal posts of this blog a bit – probably down to the other end of the pitch because if I don’t I shall have nothing to add for another couple of weeks when I again see the Doctor. Let me know what you think – I am, as are all blog writers, excited and pleased by any comments. And the changes? - more about me I'm afraid and what I hear, see and read - I just hope that it all doesn't turn into a chintz and kitten blog.

Thursday, 18 February 2010

Feelings of Betrayal and Humiliation and Good Fortune

We still have not been contacted by my new Macmillan Palliative Care Nurse – the replacement for “G” who we really, really didn’t get on with. We have also heard that “G” is no longer working in the City. I cannot pretend that I am not pleased about that – although when I was asked if I wanted to take my complaint about/with her any further I did answer No. All I wanted was for her not to be involved with me or Gavin in any way. But there is a down side – and I found my reaction quite surprising.

I asked about Macmillan Nurse “D” – now you will remember that “D” was a very close friend of mine and Gavin’s who gave us a great deal of support, as the only one of our friends and family who knew about Cancer and Chemotherapy. Our conversations with him were of immense value both practically and, more importantly, personally. Then about 30 months ago he stopped communicating with us in any way and with no explanation. Anyway, at the same time that I heard that “G” was no longer in the City I heard that “D” had been at a meeting and that “He knew all about my treatment” My immediate reaction was one of feelings of betrayal - I really, really don’t want “D” knowing all details of my treatment and – in particular – both Gavin and I discuss very personal things with Dr “RB” and Dr. “K” and I suspect in the future we’ll be discussing other personal issues with our new Macmillan Nurse – I really, really don’t want "D" to be a party to those. But I guess that I have to be “Grown-Up” and accept that the Macmillan Nurses are a team and it’s – as far as I can tell – “One for all and all for one”.

I don’t want to have to deal with these people in the closing stages of my life, and I don’t want to be a “Grown-Up” any more – I want to be like Violet Elizabeth Bott and lie on the floor and "I'll squeam and squeam 'till I'm thick” – But I can’t, I have to be “Grown-Up”, I have to smile nicely and accept that “D” has only my very best interests at heart, even if I don’t want him knowing “all about my treatment” and accept as well that I am too small to stand in the way of the avalanche that is the system.

To happier things – we saw Dr “RB” today and nothing has changed with my treatment. Although both Gavin and I think that the coughing may be worse it is no-where near as debilitating as it was before "Oxynorm". It is always a pleasure to see Dr "RB". We have decided that I’ll have another chest X-Ray sometime around the beginning of March –although I guess we know what it will say – growths increased in size! Dr "RB" assures us also that "D" only knows the physical details of my treatment - he is not privy to the more personal conversations. I must say when I see Dr “RB” or Dr. "K" I, and I guess Gavin always feel part of the decision making – We am fortunate!

Friday, 12 February 2010

The Man Whose Dog Jack Bit

I met my GP’s Surgery Manager in the Pharmacists yesterday – he’s the owner of the only dog – when a puppy – that Jack – our West Highland White terrier has ever bitten. That was a long time ago but very embarrassing! Anyway I felt it was about time to come clean about this blog to him and the Doctors in the surgery – in particular my Doctor – Dr. “RB” and so I emailed him the address of the web page.

Although I knew “GM” the Practice Manager, to be a good man I was pleased, relieved and surprised when he emailed me back to say that he thought that the blog was “very fairly and evenly put” – However he did note that there was no mention of himself in it – so “GM” here you are and thank you.

I have now been on the pill version of “Oxynorm” for a couple of days and I’m not certain if I like it as well. It works in the manner expected – I’m not coughing – but I think that I am coughing more than I was when I was on the liquid version. Also at about the 10 hour mark – I take the pills every 12 hours - the effects of the pill seem to run out of steam. I felt much more in control with the liquid and taking it every four hours which I could extend if I wanted to 5 or 6 hours.

Am I getting more bad tempered? Is this a side effect? To me it seems that I am but I hope not. Perhaps I’m just being irascible.

Wednesday, 10 February 2010

Seeing Doctor “K”

Yesterday I had an appointment with Dr “K” at Pricilla Bacon Lodge and Gavin came along. It is so nice to see someone who has time and we covered and discussed all sorts of things.

Anyway the upshot is that we agreed that the “Oxynorm” or as it’s also known - Hill Billy Heroin - is working really well – I don’t cough anywhere near much as I did, although the side effects are a little alarming – the first – the feeling of being of being fuzzy round the edges should be taken care of by moving me to a different, long lasting version of Oxynorm – this is a pill as well so easier to take – I’m told that I can still use the liquid Oxynorm if I want to and for some special reason – going to a film for instance – that’s to stop me coughing not to make me feel fuzzy.

The other side effect – and to be blunt – constipation - is alarming but I am now on Movicol and wonder of wonders it seems to be working – The drug that I was on – besides tasting horrible (Movicol is not great in the taste stakes either) was Lactulose and the only effect was huge and constant farting – not good in public places.

We also covered many other issues and it was nice to hear Gavin expressing what he felt – the Macmillan Nurse issue also seems to be covered and we’ll be getting a visit from a new Macmillan nurse in the near future who will be in charge of our co-ordination.

I am still feeling intensely relived and also very happy that everything now seems to be working out all right and that at last we are getting the attention and treatment we should have been getting in the first place.

Thursday, 4 February 2010

Results and Movements

Dr “K” rang me on Tuesday with my results from the bloods taken on the previous Friday – nothing out of the ordinary although Calcium levels were at the high end of normal, but as they are in the normal range no treatment as yet. I also told Dr “K” that we would like to change our Macmillan nurse. And that will be discussed when Gavin and I see her next Tuesday!

Today I saw my GP Dr. “RB” and had a long chat with him about this and that – although he had received a letter from Dr “K” I was able to fill him in with details of our “chat”. We discussed how well the new treatment for the cough was working - that’s “Oxynorm” or as it’s also known - Hill Billy Heroin – if you don’t believe me have a quick Google! The only problem is that it constipates me and thus a lack of movements! So I have all sorts of “shifters” prescribed as well.

Dr. “RB” also noticed that I was losing weight – it’s difficult to know what to do about this – I really don’t have very much interest in food at the moment but I have promised both Gavin and Dr “RB” that I will force myself to eat – that will be difficult – particularly when constipated but I have to try.

Something that also came up in my conversation with Dr. “RB” - we were talking about the Palliative care system and he said that he thought that I should have been accessed by a Palliative Care Doctor when I was first returned to my GP - this would be my previous GP who has now retired - from the Oncology department at the hospital – I agreed and said that I knew now that this should have happened – unfortunately Macmillan Nurse “G” threw some sort of “Hissy Fit” and I never got that assessment.

Now that I have Dr. "K" and my GP Dr. "RB" I feel so much happier. Now all we have to do is sort our a good Macmillan nurse.

Friday, 29 January 2010

Clipping The Wings Of The Angel Of Death

I have to go back a bit and do some explaining! In early spring 2009 when I was referred back to my GP from the Oncology department at the Hospital I was not referred by the oncology department to the Macmillan Palliative Care team, however my GP did. Now I have already written at length about the Macmillan Nurse “D” and how he doesn’t speak to me – but as there are only two Macmillan Nurses covering my home area I was left with “G” – shortly after I was referred to her she called in on us and the meeting really didn’t go all that well. Firstly “G” was 40 minutes late – and perhaps I’m over reacting but I did think that someone could have called and let us know that she was running late – seeing a Palliative Nurse for the very first time is quite a stressful thing and the nurse being 40 minutes late doesn’t help.

Secondly “G” arrived with someone – she made no introduction or explanation until they were both on the sofa in the living room when she introduced her colleague as "someone who was shadowing her" and did we mind her – the colleague - being present. I found this very odd – the time to ask about the presence of a third party surely should have been asked of us over the telephone before her arrival. “G” did not know us and – as I already said – meeting a Palliative Care Nurse for the first with all the implications is very stressful. “G” then asked a series of questions – apparently memorised from a list – And I totally understand why some of them were asked.

“Do you know what’s wrong with you?” and so on and so forth – eventually we got to “Do you know why I’m here?” and I answered “Because you’re the Angel of Death?” - Well OK perhaps it wasn’t very funny but it would have been nice if she had said something like “You’re OK – I’ve left my scythe in the car” instead of getting angry with me.

The next day I saw my GP and I told him that I hadn’t got along very well with “G” and he put that into my case notes. Unfortunately a few days later there was a meeting at my surgery which included “G” – “G” was sat directly opposite a large screen onto which case notes were flashed and she sat staring at “It would be true to say that Richard did not get along with “G””

A couple of days later I received a letter through the post from “G” telling me that after talking with my GP and with my partner Gavin she was taking me off her active list.

In June 2009 or perhaps July I started seeing my GP about the coughing and about my constant tiredness – and he started treating the first and trying to find a cause for the second. At the same time he suggested that I would be a good idea if once again I was put in the care of a palliative nurse. I said that Gavin and I would prefer not to have “G” as we found her unfriendly and of course the other nurse for this area would not speak to me. After much and many conversations “G” accepted me as a patient and we accepted her as my palliative care nurse. Shortly after this she rang me and we had a conversation which I can’t really remember.

Now we come to the present day – or at least a week ago! On Monday the 18th of January I rang the Macmillan Help line and talked at length – at length? it was over an hour - about how I felt abandoned and invisible – in fact much of what I put in the first posting in this blog and the reason that I started this blog. At the end of our conversation the nice lady on the end of the telephone asked if I minded giving her my name and postcode and of course I didn’t.

The very next afternoon I received a telephone call from “my” Macmillan palliative care nurse “G” wanting to know “how I was” - was this a coincidence? I don’t think so although I might be wrong, but it was only the second call I had received from her. I have reported the conversation with “G” in a previous post. But it was as a result of this I saw Dr “K” at Pricilla Bacon Lodge with the happy results detailed in a previous post.

However and additionally I had a rather bizarre conversation with Dr “K” – she wanted to know why I hadn’t been referred to her – as a Palliative Care Doctor – months ago – I explained my difficulties with the Macmillan Palliative Care team – One won’t talk to me and the other removed me from her case load until asked to put me back – Dr “K” was surprised that someone hadn’t been contacting me at least every 4 weeks to find out how I was. ....... But she then rather shut up about direct issues and talked indirectly – I was asked if I wanted to stay with “G” to which I replied that as far as I knew there were only 2 Macmillan Nurses in Norwich and she said that there were 20 in Norfolk and she would be very happy for one of the others to care for Gavin and I. I then said that I would talk to Gavin and I have done so – and so we will have a new Macmillan Nurse very soon.

I feel very ripped off by “G” but heartened by Dr “K” and her “We can’t cure the Cancer but we can handle the symptoms attitude” – I also like Gavin’s comment that he doesn’t care who we have as a Macmillan Nurse “As long as they’re friendly”

Thursday, 28 January 2010

Not Breathless - Just Coughing!

Yesterday I had an appointment at Priscilla Bacon Lodge with a Dr “K” whose speciality is palliative care, for what I thought was an assessment for a breathlessness clinic. Within a few minutes – a walk along a corridor – she knew that I didn’t have a problem with breathlessness but that I did have a problem with coughing – so much junk in my lungs that they, the lungs, are trying to get rid of it in the only way they know how – hence the coughing! And she assures me that one way or another they can get the coughing under control. I do hope so as this will change my quality of life in a big way – I’ll be able to go to the cinema and theatre – HURRAH! For now I will continue with almost the same treatment that my GP – Dr “RB” prescribed except I am now on “Oxynorm” rather than “Oramorph”.

I also mentioned how tired I was all the time and how much sleeping I do - now it’s possible that this is due to calcium deficiency Dr “K” said. And I haven’t been tested for that. Calcium deficiency would also explain the dry mouth. So more bloods to be done but I am really hoping that it turns out that I am calcium deficient as this is very treatable and would make a big difference to my life.

I was very nervous about going to Pricilla Bacon Lodge but I am very glad that I went and very pleased to have met Dr “K” – at last I am receiving proper care for my conditions – as Dr “K” says the Cancer is not curable but we can get the symptoms under control. And that brings me onto another matter and something which I am very angry about, but will be the subject of my next post.

Tuesday, 26 January 2010

Then the Phone Rang

On Thursday the 21st January I got two telephone calls – the first was from my GP – Dr. “RB” who – incidentally – I find most excellent -- with my test results which have been covered in a previous post, but also requesting that I see him every one or two weeks – I did (do?) feel that every week was a bit short so I have booked a series of fortnightly appointments! HURRAH! He asked me if there was anything else he could help me with and I suggested that there were two things – firstly the lottery numbers for Saturday and secondly the appalling day-time Television – unfortunately he was unable to help – BOO!

The second phone call was from “G” – the Macmillan palliative care specialist nurse – I’m not sure if that is her correct title though! Anyway we talked for about an hour about various things. But I suspect that the really important thing was that she has put me forward for a “Breathing” or "Breathlessness" Clinic for which I shall be assessed tomorrow – I pointed out that I didn’t get breathless, it was the coughing that was a problem “G” then pointed out – correctly after I had given it a bit of thought – that the coughing certainly got worse when I spoke! So assessment tomorrow!

“G” and I also spoke about two other things – my feeling that I had dropped off the face of the earth when my chemotherapy finished – which is apparently very common in Cancer patents. And to a great extent that is being addressed now by Dr “RB” asking to see me frequently – every one or two weeks, the possibility of a Breathing clinic and also this blog! “G” and I also spoke about the “Elephant in the room” – “D” – at length but there is little that she can do there except to be aware of how I feel and I think that I am happy with that situation.

I think that I like “G” – she is certainly very “no-nonsense” but that is not a bad thing when dealing with the grumpy, demanding and irascible, and she seems to have my best interests at heart.

Friday, 22 January 2010

The Results are In!

A week or so ago I had “bloods” and a Chest X-Ray and today I got the results today.

There is no significant change in the “Bloods” from when it was last done – HURRAH! However the X-Ray reports reads like this

PA Examination. Comparison made with previous examination dated 24 September 2009.

There has been a significant increase in the volume of the metastatic deposits situated in both lungs. The largest tumour is in the LEFT lung mid zone with a maximum diameter of 11 cm. Pleural spaces clear. No other features.

Which I guess explains the coughing for those who have spoken to me on the phone recently! The good news is that I don’t cough when lying down so I can sleep OK – but it’s really difficult to explain what you’re doing if you lie down on the floor in Tesco!

Thursday, 21 January 2010

The Mystery of the Missing Palliative Care Nurse

Some time ago I had a very good friend "D" who worked for Macmillan - I liked and respected him and we got along really well. We first met when we were both volunteering for a Gay Switchboard and we became firm friends. He was a guest at Gavin and I's Civil Partnership. After my diagnosis of cancer “D” was wonderful and explained all sorts of things to me. A good friend and one I respected a lot.

Then one day I rang "D" and only got an answer-phone message - I didn't really think anything about it - he was probably out shopping or some such - but it kept happening and on "D"'s mobile and home phone all I got was voice mail - when I knocked on his door there was no reply - ever. I kept trying to contact him for some six months culminating in leaving what I now realise was a very sad and rather pathetic phone message. Still no contact.

This was all going on whilst I was undergoing chemotherapy and then in May 2009 chemotherapy finished and I was passed back to my GP for best possible palliative care. My GP put me in contact with one of the two local Macmillan palliative care nurses – of course one of these two is “D” but he did not arrive and we saw the second nurse – “G”. Gavin and I had the usual extensive chat with her. During the course of this conversation I did ask about “D” but she was very dismissive and just said that “D” felt he couldn’t see me because of our friendship – I said to “G” that I didn’t think “D” and I had a friendship as I hadn’t seen or spoken to him for some 18 months or so. Anyway shortly after this conversation “G” dropped me from her list – probably quite fairly as at that stage in May 2009 I didn’t really need Macmillan’s help.

My GP retired and another GP took over and in November 2009 – I was starting to cough a lot – the new GP thought it would be a good idea to have me in contact with the Macmillan Palliative team again. He spent a lot of time telling me about “D” not knowing that I knew him and not knowing that “D” wouldn’t speak to me and hadn’t done so for nearly two years. When I pointed this out he said words to the effect of “Nonsense I’ll speak to him” but then and later the GP told me that “D” had said to him “Richard has been told at length that I cannot deal with him as I consider him a friend”

Of course that had never ever been said to me, although I would in fact have been very understanding if this had been the case – I feel that we could have remained friends and put boundaries in place so that we never talked about cancer. But I never had the chance to say that to “D” and I feel very bitter – conversely I have also been left with only one of the Macmillan Palliative care team – what happens when she is away on holiday?

Thank you

Thank you everyone for yesterday's messages of support - They really did cheer me up a lot

Wednesday, 20 January 2010

Sucking on a Fisherman’s Friend

The coughing is really annoying – it started in a small way about 7 months ago and I didn’t really think anything much about it. But slowly, as time progresses, it got worse until sometimes I am now left doubled over and almost unable to breath – When I first saw my GP he didn’t want to give me anything to help with the coughing but relented and gave me a codeine based linctus – this worked after a fashion but as it made me constipated and I had to balance poohing against coughing!

Then I saw my GP in the first week of January and I have moved onto a morphine based medicine – I believe it to be actually a painkiller rather than a cough mixture and the idea is to make me less susceptible to the cough reflex and – HURRAH! – it does seem to be working. The downside is that it makes me feel fuzzy round the edges and so I do try to limit the number of doses I take.

Although the coughing is very annoying for me - and I suspect even more so for my partner Gavin - in one way I am lucky with the coughing – it only happens when I am upright, lying down it doesn’t seem to happen. That means that I can sleep.

I am also getting through a lot of Fisherman’s Friends - I have boxes of “Original”, “Cherry”, “Mint” and “Blackcurrant” and I’m awaiting delivery of a box of Lemon flavoured ones! So I spend my days sucking on Fisherman’s Friends and swigging morphine based medicine.

Tuesday, 19 January 2010

Feeling Down

In May 2006 I came home on 6 weeks leave – I was a Ship’s Captain – but I had a bit of a stomach ache and this was diagnosed as cancer of the colon. I had the usual surgery to remove part of the large intestine, but a scan just before the operation showed the cancer had spread to my liver. The surgery was a success and I went onto palliative chemotherapy – 4 different chemotherapies one after the other as each one stopped working – by this time the cancer had also spread to my lungs.

Throughout I was being told that I probably had about 6 months but I had wonderful support from nurses and oncologists and I felt that I knew what was happening, there was always a bustle of people asking me how I was and taking bloods and other tests. Then in May last year – 2009 - it all stopped – I had run out of chemotherapies and I was returned to my GP for best possible palliative care – now the medical support changed - it was very much call me when you’re ill and to see my GP means making an appointment 2 to 3 weeks in advance.

I do have support from my family and friends but all this has been going on for a long time and in many ways I feel it is me supporting them rather than being supported by them. I get very tired and I cough a lot but generally I am in good health.

I have been introduced to the local Macmillan palliative support team but there is only two of them and one of them won’t talk to me. The other one I have met once and spoken to once on the phone and that is the sum total of out interaction.

I feel very let down – as if on the completion of the chemotherapies in May 2009 I was just dropped through a hole and became invisible. And so today I rang the Macmillan help line and talked for an hour – towards the end the nurse asked me what would help and I didn’t really know but I have thought about it and I know now what would help.

I have terminal cancer and I want someone to notice me!