Over and Out

All well. Back at work, off meds. Dr Chris Nutting at the Marsden has confirmed that now the cancer has metastasised (spread) we can be confident it will be back at some stage, but that that may well be in a long, long time, ACC is a lazy cancer.

So its back to normal life. Baseline CT scan in about 6 months will be another milestone.

Nearly off the drugs

Two weeks have flown by. Down to 10mg oxycontin a day which seems sustainable. Hoping to be back in work in a week.

Jackie and I were in the Marsden last week on Wednesday for a 'next steps' meeting but the consultant didn't turn up so it has been slow to get final prognosis and feedback. Two consultations this week: clinical team re next steps tomorrow, and surgery team to hopefully sign me off as done and dusted re thoracic surgery on Wednesday.

A great end to the week with a laid back visit by good friends who came over from Dublin.

One step at a time - stepped down the drugs though

Yesterday I tried to ramp down the morphine again and failed. It's extraordinary how much the oxycontin manages the pain. I went drug free for 24 hours to see if it was sustainable, but it quickly felt like a knife had been pushed through my rib cage so I'm back on the morphine today.

It was good to get off them though. It felt like slowly surfacing out of shallow water. It was great to feel like I was getting 'back to normal'.

At the same time, once the pain started to build going back on oxycontin was like wrapping a warm blanket back around me.

It was great to retreat back to what ultimately felt like a ready-brek glow....

Need to check with doctors when I can expect to get back to normal but it seems like it is a slow but steady recovery and I really need to get off the drugs.

Good news is that I'm trying to keep myself on 20mg oxycontin, 1000 paracetemol plus 5mg oxynorm As and when.....

Meds ladder 2

30mg won't work. Back to 40mg.

Meds ladder

So am now experimenting with pain control.

Currently on 40mg oxycontin, 1000mg paracetemol plus 5mg oxynorm as and when, per day.

Am moving to 30mg oxycontin from tomorrow to see how it goes.

Current dose makes it difficult to focus and concentrate.

I'm mobile but get tired quickly.

No further treatment required

Dr Chris Nutting at the Royal Marsden confirmed today that he has reviewed my case and surgical specimens and that the 'solitary deposit of adenoid cystic tumour has been completely removed and no further treatment is required for the time being.'  Need to go back for a follow up in a month's time.

So now just need to recover, get off the morphine and get back to life.

Owwwwww

First time I've felt surgical pain.

Fell between a hole caused by nurse handovers, epidural switch off and pain management team awareness. Have just taken 5mg of oxymorphine I'm hoping will help.

Cannot move with pain at mo. Waiting for morphine to kick in.

Dull results from op probably tomorrow.

Epidural switchd off

Departure date

Progress is good. Last drain, and epidural due to come out tomorrow.

Wednesday is target date for going home. Hurrah.

Visiting

Hi all

Visiting from lunchtime on up till about 8pm should be fine any day this week EXCEPT today.

I still have chest drains in today so avoid visiting today.

Thanks M

Visiting

Hi all

Visiting from lunchtime on up till about 8pm should be fine any day this week EXCEPT today.

I still have chest drains in today so avoid visiting today.

Thanks M

On the regular ward

The guys have been great here. I spent one night in the Recovery Room and then two nights in the High Dependency Unit. Am now in a room. Cathatar came out today (just breathe in deeply, it doesn't hurt, honestly) and hopefully the chest drains x2 will come out tomorrow.

All good

Definitely a secondary acc tumour not a new primary. No bone work although big incision down my back . Today surgeon said he thought I'd be out in 4 or 5 days. Have already been forced onto an exercise bike for fifteen mins. So we couldn't have hoped for a better outcome.

Anytime after 1000

They are Keeping their cards close to their chests but are making me wear tights. Might go down at 1000.

Timing

So the team think op is likely to start about midday. We've agreed on an epidural for pain management postbop (they told me what I should have, I said yes) which with luck will put in place during surgery. I will have many pipes, feeds and shunts hanging off me after op.

I have had lots of jabs and tests today, but also managed to slip out of hospital for what was not a bad curry at all with J, H&B at Kare Kare on the Old Brompton Rd. Followed by a quick pint with Markie. So not a bad evening at all, considering.

Now have some time to absorb some literature on lung ops that cheerily starts off with news tthat horacic surgery is the most painful to recover from and from tomorrow my life will be pain on scales of 1 to 10, and lots of militant physiotherapy.

:)

Great.

I'll be back

We should know where by the end of work day tomorrow.  Jackie will be giving parents a buzz after the op, and she'll also let Cara know in Dublin how it went.  I'll be back on the blog as soon as I can, once I'm able to use what is an undeniably difficult to use keyboard on my mobile (whatever Apple says about usability).  (BTW have you seen that rather nice Android software keyboard that predictively makes the next most likely keys you will need larger than the rest?  Love that, the iPhone would benefit a lot from that.  Ooops.  Sorry, it's my inner geek.)

Don't be afraid to visit

OK, so, unless I post otherwise I am open for visitors from Monday 17th.  I will be on self administering morphine which means that for the first few days I will be fairly incoherent which is why no visitors before then.  Work and family friends all welcome.

You will find me at Royal Brompton Hospital in Fulham, Reginald Wilson Ward, Syndey Street, SW3 6NP, 020 7351 8567.

I am now thinking about the operation as being one of DEFCON 1, 2 or 3. 

I am hoping surgery will not go beyond DEFCON 1 but have signed consent forms for the surgeon to take me all the way to DEFCON 3 if that is what needs to be done.

I'll find out how surgery went on Thursday night. 

DEFCON 1 - Straightforward Thorocotomy with laser pulmonary resection
DEFCON 3 -  A procedure Mr Ladas (thoracic surgeon) calls a 'Grunevod', where they cut out ribs where there is contact with the tumour and and replace with poly propylene
DEFCON 2 - is a middle ground where they discover this is a new primary cancer rather than metastasis of the original ACC.  This would mean a more aggressive approach to surgery (and perhaps radio or chemo therapy after the op???)

The tumour is right at the top of the lung on the RHS (pretty much where the dot for parietal pleura is on the image below).  It's right under the clavicle (collar bone).  This makes surgery complex as it is also where there are a lot of the key blood vessels.  The scans are inconclusive, it is not clear whether the tumour is just in the lung, has penetrated the pleura, and/or is contact with bone.  The surgeon is not sure what to expect, it seems he is unsure whether the 2.2cm tumour will be like an egg yolk or a chunk of bark, so what he does when he's in there is an entirely dynamic situation.


So its fingers crossed, when I come round from surgery the first thing I'll be doing is feeling my neck and shoulders to see if they are the way I left them before the op......

The scans over past five weeks show the tumour hasn't really changed which means it could have been hanging around for ages, and so it really is lucky this has been detected now. 

Fingers crossed all will be well.  Anything other than DEFCON 1 is disapointing. 

Surgery plans confirmed

Surgery date is May 13th at the Royal Brompton Hospital in Fulham (Reginald Wilson Ward, Syndey Street, SW3 6NP, 020 7351 8567). 

I check in on Wednesday the 12th.

The op will be dynamic in that they don’t know what they will do until they start.  It may stretch to 15 hours.  The Brompton is the only hospital in the UK able to perform some of the procedures that they may need to pursue.  Surgeon has suggested I plan for up to a ten day stay in hospital post op.  This ten days is conservative and we hope it will be less.

Surgery Update

Just a quick update following meeting the surgeon earlier.

Basically we are looking at surgery on either Monday or Thurs next week (TBC). Should know tomorrow.

They expect 5-10 days in hospital following the op depending on what they find during surgery. The scans are inconclusive. There are three main levels of escalation that could unfold in an op that will take a minimum of 5 hours and up to 12 hours.

More tests and consultations

Next big day is Wednesday 5th.

More CT scans and consultation with surgeon at the Royal Brompton.  Would hope to know a lot more about the surgery and recovery after this date, and also, maybe, a surgery date, although I am not convinced they are able to be quite that fleet footed.

Great news - no other spread detected

Just been on the phone to Angela from the team at Royal Marsden Fulham who has confirmed the PET/CT scan has not uncovered any other evidence of disease spread.  This is really good news.

Now we need to to arrange surgery to resect (remove) the lesion (tumour). 

Have been referred to Mr Ladas at the Royal Brompton.  I will be calling his secretary on Friday if they have not been in touch to arrange a meet up.

Next steps
1 - Meet Mr Ladas, hear his op plan (take out the lobe? or take out the lesion (tumour)
2 - Mr Ladas to decide what pre-op prep their might need to be eg meet the anethetist, fitness tests etc.
3 - Get a date for surgey

PET complete, waiting for results

Friday went swimmingly.  What a lovely bunch of people at the Marsden in Sutton (first trip there).

Scans went well, two hours of lying still, while it felt like nothing was happening.

Apparently they got what they were looking for with some good scans.

The team will review the results at the end of the day today and call me after 530pm or else tomorrow.  Past experience is that I need to call them to get a response, so will do that tomorrow morning....

Know your enemy

So next steps is information gathering and then decision making.

Friday 23rd - full body PET scan with the Nuclear Medicine Department at the Royal Marsden Sutton.  This takes about two hours.

Tuesday 27th - joint H&N plus Throcic clinic will make a call on the next steps to take.  If the PET scan confirms findings from the CT scan, then operation soon after will be next step.

Wednesday 28th - I expect to hear feedback from  the clinical team on Tues afternoon or else Wed morning.  This feedback will be to confirm next step, which we expect to be to recommend an operation. Operation is a referal to a Cardio-Thoracic Surgeon at the Royal Brompton which is a short walk from from the Royal Marsden Fulham in Chelsea.

So it seems I am in the unlucky 1/3 of the following data from my last post six years ago:   "Distant metastases were the most common type of disease recurrence, developing in 74 patients (37%) of whom 62 (31%) were disease-free at the primary site."

This distant spread will not be confirmed until after the op, and a bi-opsy, although it seems the odds of it being anything other than distant metastases (spread) is very unlikely.

Next big milestone: PET scan result, Wed 28th April.

PET Scan Result.  This will confirm whether the cancer has spread anywhere else.  If it is only as observed in the CT scan this is good news.  Bad news would be they've found of metastases of the cancer in other places.
 

So news from the Royal Marsden yesterday is that they want to do more scans before making a decision on surgery.  Full body PET scan to be confirmed, at some point next week.  Decision regarding surgery pushed to 27th of April. 

Everyone at work very supportive which is much appreciated.

So.  Was hoping not to be updating this.

Wed 7th, following a routine scan a 2cm lesion has been detected in the top right lung which is most likely to be a metastatic tumour. So after 6 years or so it looks like its back.  Of course it may not be.  Could be something completely different. Tomorrow Tues 13th April some decisions re surgery will be made.  I expect to have surgery next week, to remove the lump.

Shite.

Up to date data
on head and neck ACC (from Chris Nutting)

This is good reading for anyone confused about outcomes for ACC of the head and neck - I know I was when I was diagnosed - it is the best contemporary data set available.

The influence of positive margins and nerve invasion in adenoid cystic carcinoma of the head and neck treated with surgery and radiation.

PURPOSE: Surgery is the primary treatment for adenoid cystic carcinomas arising from major and minor salivary glands of the head and neck. However, local recurrence is frequent because of the infiltrative growth pattern and perineural spread associated with these tumors. At UTMDACC, we have had a longstanding policy of using postoperative radiotherapy to reduce the risk of local recurrence and to avoid the need for radical surgery; this 30-year retrospective study analyzes the results of this combined modality approach.

METHODS AND MATERIALS: Between 1962 and 1991, 198 patients ages 13-82 years, with adenoid cystic carcinomas of the head and neck, received postoperative radiotherapy for known or suspected microscopic residual disease following surgery. Distribution of primary sites was: parotid: 30 patients; submandibular/sublingual: 41 patients; lacrimal: 5 patients; and minor salivary glands: 122 patients. Eighty-three patients (42%) had microscopic positive margins and an additional 55 (28%) had close (< or =" 5">

RESULTS: Twenty-three patients (12%) had local recurrences with 5-, 10-, and 15-year actuarial local control rates of 95%, 86%, and 79%, respectively. Fifteen of the 83 patients (18%) with positive margins developed local recurrences, compared to 5 of 55 patients (9%) with close or uncertain margins, and 3 of 60 patients (5%) with negative margins (p = 0.02). Patients with and without a major (named) nerve involved had crude failure rates of 18% (10 out of 55) and 9% (13 out of 143), respectively (p = 0.02). There was a trend toward better local control with increasing dose. This was significant in patients with positive margins, in whom crude control rates were 40 and 88% for doses of <> or = 56 Gy, respectively (p = 0.006). Actuarial 5-, 10-, and 15-year freedom from relapse rates were 68%, 52%, and 45%, respectively. Base of skull and neck failures were uncommon with or without elective treatment, developing in 2 and 3% of patients, respectively. Distant metastases were the most common type of disease recurrence, developing in 74 patients (37%) of whom 62 (31%) were disease-free at the primary site.

CONCLUSIONS: Excellent local control rates were obtained in this population using surgery and postoperative radiotherapy and we recommend this combined approach for most patients with adenoid cystic carcinomas of the head and neck. Perineural invasion was an adverse prognostic factor only when a major (named) nerve was involved. Microscopic positive margins was also an adverse prognostic factor, but even when present, local control was achieved in over 80% of our patients. We recommend a dose of 60 Gy to the tumor bed, supplemented to 66 Gy for patients with positive margins. Despite effective local therapy, one-third of patients fail systemically, and good treatment to address this problem is lacking.

Int J Radiat Oncol Biol Phys. 1995 Jun 15;32(3):619-26. Related Articles, Links
Garden AS, Weber RS, Morrison WH, Ang KK, Peters LJ.
Department of Radiotherapy, University of Texas M.D. Anderson Cancer Center, Houston 77030, USA.
PMID: 7790247 [PubMed - indexed for MEDLINE]

The last posting (ever?)

Thank yous.

I had to do this because for the first time in my life I came up against something too big to face alone. I never imagined I would have to face such pain & fear in my thirties. Some people gave such stunning (and practical) support and encouragement over the past eight months I need to mention them, I (we) could not have got to here without them.

I have been so lucky to have had J by my side, I am humbled by her strength and determination.

Markie pointed me at Patrick Bradley and encouraged me to seek a second opinion. This
acted as a tipping point which changed the path of my treatment, and almost definitely
my long term prognosis.

Janet & David, Anne, Sarah & Penny, Markie & Lyn, Cara & Stewart, Louise, Saskia, Helen, Chitra, Bruno, Cormac, Piero, Yates, Tom and OC&C, who where so supportive to J.

I'm going swimming with the kids :)

Seriously Good News

... following today's meeting at the Royal Marsden with Dr Chris Nutting about my prognosis. The emphasis was what we know and can expect about my presentation of the cancer, not 'all ACC sufferers'.

Fresh air

Chris rubbished the oft quoted (to me by Dr Odutoye at St George's Hospital when we were first told I had ACC) dismal stats on ACC of "5% death after 5, 60% after 15 years from diagnosis".
Most ACC diagnosis happen to people in their 60s or 70s, and the stats do not look at 'cause of death' so it is not surprising the mortality rate is high.

Staging

Also, the 'presentation' and 'staging' of the disease is very important and I am in a good position on that front as a "T2 N0 M0". T refers to tumour and can be 0-4 (bigger numbers are worst), N is for infection of lymphatic nodes and system which can be 0-3, M is for metastatic spread and can be 0-1.

So whats my prognosis ?

+ Local Recurrence - "the same tumour coming back" - after surgery there was a 30-50% chance, but by adding the radiotherapy (hell) treatment this has fallen to about a 10-30% chance in the long term (10-25 years).

+ Metastasis - "popping up elsewhere" - There is perhaps 30-50% chance of this happening in the long term. In the following order of likely places: lungs, bone, liver. This is the big unknown. Chris has two patients with the same presentation as me he treated about twenty years ago who are still absolutely fine today!

1 in 2 chance of being 'cured'

Today is the first time EVER the word 'CURED' has been used in connection with my case. There is maybe a 50% or 70% chance that I am 'cured', which means there is effectively no remaining ACC in my body of note.

Other good news is that the PEG is dead

The PEG tube came out today because I have maintained my weight for the three weeks. My weight will not really increase until I have finished healing, and there is still along way to go on this around my neck, throat and tongue.

This means I can return my infernal enteral pump and its associated giving packs and Jevity nutrition feeds and go swimming with the kids :) hurrah!

Crash!

Unbelievable, I get the courage to take the moped to work today, I stop at a pedestrian crossing when the lights go red. It's a wide straight road with little traffic, I am reminiscing on my accident only three months ago, 200 metres away, when I get rear-ended by a pickup truck. Massive impact, moped pops an enormous wheelie and shoots out from under me and I hit the deck, with a micro second to think 'oh no not again...' like the bowl of petunias in the hitch hikers guide to the Galaxy... Then on the road with massive pain in my lower back.

Some teenagers run over and (to my horror) dragged me up and off the road (I cannot walk or move my legs and of course imagine a broken back). I'm fine though, just badly bruised.

Ambulance and police arrive but this time I refuse a trip to hospital. We were both breathalised (1030am). The driver of the pick-up is going down for careless driving; if he had not stopped it would have been gates for me. Once again I am exonerated as a vulnerable road user and victim. The moped is a true wreck now though I got it to work and home.

Fifteen years driving big bikes and no problems, six months on a moped and three accidents, none avoidable, none my fault. The biggest danger I face is the London commute. The moped has got to go. Who ever said a Ducati 900 was dangerous ? The noise saves lives through road presence.

Baseline scan...

Will happen in a month or so. No-one is expecting anything other than an all clear on this but it will be the first time there has been a full PET/MRI body scan to look for any spreading (metastasis) of the disease.

Kicking the PEG

Well I've tried not using the PEG tube for about ten days to see if I can eat enough to keep gaining weight. Sadly it appears I cannot as I am a pathetic 62 kilos whereas I had managed to get up to 63 not so long ago, this means I need to start using the tube again to up my nutrition intake.

A morphine free weekend...

The weekend went well, I was tired and grumpy but my family (and friends) are well used to this so all went well.

Off the morphine

Today marks end of morphine, so I wait to see if there is a withdrawal to deal with

Re-integration & Recovery

Well on road to recovery and back at work most days. Re-integrating with work and family life after such a long time of sickness is the next step. Things have certainly changed for me, and also people's perceptions of me. It seems that the world and the number of people and friends I know in it has shrunk dramatically since my sickness. I think this will take a long time to come to terms with, and also to regain my social skills and confidence in public etc.

Other than that milestones are:

1. Kick the morphine, I am on a very low 25 mcg dose now and plan to kick it in a week or so
2. Baseline body scan to establish I am free from cancer (due in a month or so when my mouth and throat are better healed)

Other than that... side effects are a 'harlequin' like patchiness to my face because of the pattern of my beard growth, salivary glands don't work so eating can be tricky and oral hygiene is very important, I have a slur and double chin. All of these should be temporary and fingers crossed gradually improve over the next six months or so.

Gastro Virus

Well it looks like the morphine withdrawal was overlapped with a virus I must have picked up as I started ventruing back into the real world. Four days of nil by mouth or tube put me way back in my recovery and was close to being taken back into hospital but have gladly avoided it. I am back on track although taking loads of anti vomit drugs, and still not takkin gin nearly enough nutrition or liquid.

Morphine withdrawal is not good

Went down to 25mg last Monday and am now fulltime in bed again.

It is trainspotting without the hallucinations.

The side effects grew in intensity and changed - first few days was mainly dizziness, nausea and sweats which was ok, made it to work on Wednesday, but by Thurs morning I was vomiting whenever I sat up in bed, aches and pains everywhere, constipation. Have not managed any Jevity feed or water since Thursday. Solid food is completely out again.

Effects were originally guessed to be a couple of days (district nurse), after four days our wonderful McMillan nurse made it clear five or six days was more normal, while the hospice phone line says seven to ten days.

So two steps forward ten steps back. J is a trooper although I am worried she is coming down with a bug. My withdrawal symptoms are not what we need as where starting, just a little, to get back into life. Tomorrow is seven full days. Fingers crossed I will wake up a different person (I certainly do not like this one) ...

Slow Progress

I cut my morphine consumption in half again today from 50mg p/hour to 25mg p/hour.
Had a bad day as a result with faint spells, sweats and much discomfort, feel better now though and I am keen to get the drugs out of my system.

Recover is still so goddamn slow although I am eating 'something' everyday it is not much. I hav ebeen ill for so long now I am forgetting what it is like to be the 'normal me' as aopposed to the 'broken me' which I have been since sometime in October 2004.

Work is being very supportive, did my first half day last week and plan to go in several times this week - lots to do!!

Back to life and future milestones

I am now focussing on getting back to normal life - hopefully I will have a good chunk of time before anything else happens - could be anything from six months to twenty five years.

The next milestones will be the body scans which have not been scheduled yet - I will post dates when I know them.

The next stage will be if and when the cancer metastasises and appears somewhere else. The stats say 15% of people diagnosed are dead within five years of diagnosis, while 85% are after fifteen years, although the disease is so rare the stats are based on a small number of very different cases over a very long period of time.

So now we wait and see and learn to live with it.

Out of the Woods

Last week saw the first stages of real recovery, finally.

The PEG tube has settled down and I can get about without anyone knowing it is there. Today was a watershed in that I visited everyone in work which was great. The long tube journey was hard but it was worth it to see everyone. It is amazing how little seems to change: it feels to me like I have not been in work for a lifetime however for work it has been about 8 weeks. The piles of junk have moved ever so slightly but other than that all is well in the studio :)

My plan is to gently ramp up going to work and engaging with normal everyday things. I need to still take it easy but it looks like I really am finally out of the woods. I have successfully halved my morphine to 50mg per hour, and will cut it down to 25 in two more days or so. removing the PEG tube is (I have been told) a simple and painless procedure so hopefully no more drama and hospital visits.

Hellboy

Well the beginning of January was worse than anything before it which is why the blog stopped.

The medical team have been well too optimistic about expectation of recovery. Its like I had trained to get through a 100m sprint I knew would be horrendous - J and I had both mentally and physically prepared for a world where I might 'manage to eat Xmas dinner', where in fact the reality was end of Dec and beginning of Jan was worse than any other stage post RT.

Apparently this is common as well - four weeks post RT is not long.

It got to the stage where I could not get out of bed at all. This was compounded by a too high dose of morphine - at this stage I was on 100mg of morphine an hour delivered by a Duralgesic patch.

At the Marsden for a PEG
3rd-7th January

They said I would be in for a night or two and was in for four, it seems this is the way it works, so when they said I would be well by Xmas I guess they mean February. The operation for this is horrible. All the action happens via endoscope where they push several tubes down your throat through your mouth. You cannot be in a general anasthetic so they heavily sedate you and you lumber in a haze through the most horrible procedure. All relatively uneventful although once again there was a fair amount of pain. They upped my Duralgesic Morphine patch to a 100 which delivers 100mg per hour.

The PEG goes in

We've finally decided to go ahead with having the PEG surgery. Difficult call so late i nthe day regarding recovery but what has swung it is a need to start getting back to 'normality'. The PEg is far more discreet and less likely to cause complications than the current tube up the nose set up. The PEG will allow me to mingle more with people without standing out so much.

Getting better

Recovery is back on track again and I feel better and stronger most days now, hurrah! Had friends to stay for a couple of days which was a delight, great friends and company did a lot to take our minds off everything else :)

Tried some mashed potatoe today which did not work out well, this, and the relative discomfort of the NG tube tonight is reinforcing the decision to go ahead with the PEG.

Back in Hospital

This means I am back in hospital at 2pm tomorrow (Monday), and will be back home on Wednesday with new PEG tube in place. It is unclear yet whether it will be a general or local anaesthetic, apparently they often do this under heavy sedation although in my case it sounds like they are aiming for a general - perhaps because of the pain and swellig in my throat...

Off the hook or on the phone ?

Reading this blog does not free you of the responsibility of calling now and again. Thank you to all those who have been on the phone, SMS and email offering support - you have no idea how much of a difference it makes. For you others, and you know who you are, don't be afraid to call !

New NG tube

Back at the Marsden with J most of the day today. Once again J's parents where there to help.

They have put a new NG tube in which was painful. It was done by a doctor who admitted afterwards he had not done one since 1997, all the specialist nurses are understandably enjoying the holiday season.

It's a straightforward procedure - you get a small flexible pipe and slide it up the nostril of your choice and wiggle it until they get it as far as it will go, then they encourage you too swallow it be keeping trying to swallow as they push it down into your stomach. I ended up taking over and shoving it in myself during my retching and gagging. The doctor was delighted! This was followed by more blood tests and x-rays and prescriptions. To finish they covered my face in ugly, painful to remove surgical tape to keep the tube in place. Megads.

More surgery in New Year

We have also decided to switch to a PEG tube. This is a tube that is punched through the stomach wall out of you tummy. This means I will not need the NG. It is more stable however requires surgery to be put in place. This is the route we should have taken six weeks ago.

They have booked a PEG tube insertion which is another operation most likely under general anasthetic - for Tuesday, which means I will be back in hospital on Monday, overnight for the op on Tues, and overnight Tues night for observation. We may call this off depending on whether I can get myself to eat something this weekend.

This is disappointing as we have all focussed on getting to the new year, which is when conservative estimates of recovery reckoned I would basically be in the clear. We have always understood that 2-3 weeks after RT things would dramatically start getting better.

There is no way J and I will be back to normal/work at the beginning of jan which is also a big blow.

Worse

Three weeks since the end of RT and things are bleak. Recovery is slow and painful.

The nasal-gastro tube worked well over Xmas but I finally had vomiting and coughing fits that led me to pulling it out myself early this morning. I am back pretty much full time in bed. Going back to the Marsden tomorrow to have either another nasal-gastro tube put in, or a PEG tube that is sugically inserted into the stomach through the stomach wall. Duragesic 75 morphine patches are helping with supplementing of about 5mg of additional oramorph every two hours.

This is a new all time low when I should be on the mend.

:(

5 more nights in hospital, all ahead slow

Whisked to Parkside last Monday. My weight was 63 kilos and I was seriously dehydrated. I spent five days being rehydrated and fed via tube into my stomach nad got back home yesterday.
Back home now with the pump machine and still have the tube in mystomach, which goes in through my nose so is not too attractive. I hook up to the machine for about 15 hours a day to receive all the nutrition I need.

I went to Parkside as there was no room at the Marsden. The hospital was OK however no-one new why I was there. The nutritionist only knew on the fourth day of my stay I was recivering from RT. There was a Dr Stone there who was very good at pain control. I am now on 90Mg morphine patches that I change every three days as a baseline, and then take oramorph 10mg per 5 m/l as and when required. Also, diclofenic at night.

It is good to be home however daunting. Everyone here is dispirited about the slow recovery as we move into the festive season. The pump I have been given is not portable so once I am connected it is very awkward to move around. It should be replaced this week with a portable model.

There is a regional nurse support service who is supposed to visit everyday (from the GP office). The first visit was due yesterday between 2 and 4, but of course, no-one turned up and no-one called.

No surprise, it is typical of the broken communication lines and lack of respect for the patient I keep experiencing regarding my care. There is more interest in my disease than in me.

Can you believe the Royal Marsden has a speech recognition system on their phones? (you cannot use numbers to navigate). On Monday I spent about 45 minutes in agony trying to get the system to understand my painfully articulated requests. I wonder how other patients cope who can no longer speak at all - what a mindless, selfish ignorant purchasing decision.

I am also angry that I was only hospitalised when I said I needed to be, only to be told I was dangerously dehydrated in hospital, 63kilos and why wasn't anything done sooner - what is my care team at the Marsden for then ?

I have no idea when I will be able to eat.

Inpatient ? Impatient.

I might have to go back into hospital for a couple of days to get back on the recovery road. My weight is still nosediving (I started at 79 and am now baout 67kilos). Going back to hospital as an inpatient would mean I can be fed through a tube for a couple of days so I get a good shot of nutrition which will help my body recover from the RT. Again, short term pain for longer term gain.

Other than that I am regularly hallucinating. A good example of the sort of thing was yesterday evening two people at the foot of my bed kept silently proferring me flowers to buy from a whicker basket. They didn't talk or aything, but also, they wouldn't go away (and I am still at home at the moment!). So I just kept turning my head in a silent 'no', then asked J if she'd seen them!

Dreams and wakefulness are much more merged. Another thing is that I 'think' in dialgue a lot more, when I do this my hands involuntarily start to turn the pages of an imaginary book.

So going into hospital is probably a good ting to do, main obstacle will be the availability of a bed...

On home slope now.

All my time is spent in bed mainly sleeping. Taking even more morphine. Sorry for not returning those calls but speaking is extremely painful - I am better at email.

More help coming in from Ireland (thank you, you know who), and my god a bunch of flowers, and jaysus even some friends had a baby :) and they didn't moan about it on a blog for nine months!

How good can it get ?

3 more beams to go

More of the same... but perkier this week. P came and stayed for a few days helping with the kids - much needed help for the body and soul!

More drugs - have upped the morphine, am taking it throughout the night now instead of when I am just awake. Skin is starting to crack and bleed (necratise? may be the official version) so have some more unguents to apply, but given I am three beams away from finished I think I am going to get away with bad sunburn on the outside more than anything else.

I am also now hungry and painfully aware of how central it is to socialising humans.

I am hungry but cannot eat, but I can sit there sipping my food supplement that tastes of flat petrol actively 'hating' people around me as they enjoy pizza, or oh! a cup of tea and a chocolate biscuit! Fuck me imagine enjoying a glass of wine!

More than anything I am convinced this is like childbirth except the really painful part is spread more thinly over 8 weeks, rather than concentrated in a couple of days or hours.

Everyone should do this, it is character forming.

Side effects getting worse

Spent four hours vomiting every ten minutes from midnight to four in the morning on Sunday night...

Reminded me of being a teenager. Particularly Sandford discos.

Drugs

I am taking 10mg of morphine sulphate every 4 hours. I also have a local anasthetic called Instillagel I use for my mouth, along with a home brew of the Royal Marsdens called Mucilage that I mix with aspirin and gargle every four hours. I also have metropan (sp?) for sickness (as if I am not sick enough), and also co-codemol 30/500 for general pain relief.

The funny thing is that the biggest long term effect is damage to teeth and the blood suplpy to teeth so dental hygiene is massively important. This is explained early on in the process and sounds fair enough, until you find yourself presented with a mouth and gums so ulcerated it is painful to put a toothbrush within spitting distance of your mouth (if you could spit), let alone use toothpaste etc. I have a flouride paste that protects my teeth however it feels like steak hitting a hot griddle.


Hunger

The hardest thing to do is eat. Physical (it hurts to swallow) but also the psychological (I am hungry, but my brain chooses to surpress the hunger to avoid the pain). I have various drink based food supplments but they are all utterly disgusting, and what is the point when you vomit them anyway?

I've stopped working now. I am also a little scary to look at now - I look like I fell asleep under a sun lamp, just after taking a punch in the mouth.

2001 a Space Odyssey

on the stereo today.

Very appropriate as we have started progressing up the pain ladder and management thereof...

Now on morphine and have been a space cadet all day.

Taking a lot of different palliative drugs now to control pain - cannot walk in a straight line today and am very dizzy, but in a lot less pain. I am barred fro driving for the moment (shame they didn't do that yesterday!). Symptoms are expected to continue to worsen until end of treatment. Roll on Dec 8th. Beard had to go last night - it was falling out so I've shaved it. Also came home with a large sack of liquid meals as it is difficult to eat and talk.

Roll on December 8th.

Side effects

Apparently they will continue to get worse and worse until treatment is over. Not sure how much longer I can go to work. My favourite pastimes of talking and eating are now very difficult.

Crunch

On my way back from radiotherapy (week three of six) today someone opened their car door and whacked me off my moped. I was thrown through the air only to land in the path of oncoming traffic which luckily stopped. My back and arm where painful so I was bundled into an ambulance in a neck and head brace and taken to the Chelsea and Westminster A&E (400 yards from the Marsden) where there was some concern about my neck. Following X-rays I was released and thankfully walked home wonderingat it all... I'm home again now, and the side effects of the RT don'tseem so bad to me now...

One third complete

More than a third done now. I hate that machine. Not one of the side effects are a positive step forward: I have sun burn, blisters, weird saliva, loss of taste, sore teeth, dizziness and nausea.

The Music Mystery unravelled

More importantly I have discovered the music in the radiation room is selected and played by the technicians on an ad hoc basis. The Marsden does supply guide classical music CDs, but the techies think they are a bit too funereal, so bring in their own cheesy pop and best of CDs!!

This is why J ended up holding my hand as I get bolted down with "Stand by your Man!" playing on the ghetto blaster. priceless!

Only one patient using my machine objects to the music. Staff are careful to have the music off before this patient arrives...

Eight down, twenty two to go

First side effects are emerging: Sore throat for a couple of hours over the weekend and nausea. The nausea was acute enough to stop me going out, but it only lasts short time periods so it's not really a bother. Eating is getting a little random in that I alternate between either hoovering or refusing everything.

Its morning sickness I guess, only not nearly as bad.

The elusive Chris Nutting is back from holidays so I have a clinic with him tomorrow and expect more info on progress.

Groundhog Day

RT is increasingly a groundhog day type experience. You turn up, everyone is nice, they play cheesy music, you take your top off in front of three cute nurses (no blokes), you lie on a table, they bolt you down... its only then things go downhill.

They leave and the machine takes over. It rotates about, makes a face at me using a kind of gate on the front, then it whines at me. There are two types of whines, a high continuous one, and then a high continuous one with something reminiscent of the food blender in Star Wars, way back when Luke was gazing at the stars and wondering about the future...

The machine is becoming my nemesis and the focus of my treatment. I'm starting to fixate on it - I stare back at it defiantly! It has a purposeful black maw that feels evil. When it whines you don''t feel anything but you know it's spewing out bad magic ...

In either case I find myself staring at my own reflection wondering what to think about. When the whining starts you mainly think about how you want it to stop. In between times I find myself wondering who chooses the cheesy music.

Day One RT

Well the machine is just like all the others. Big: it fills a room, and rotates about you while you lie flat on your back. Imagine a massive U-shaped magnet where the ends of the Us can travel 360 degrees around the length of your body. It has a glass part where the rays come out so you see yourself kitted up in your shell staring back at you. They play gentle, calming music although sometimes the tracks are a bit ropey (sheesh I got "I wont let the sun go down on you"). Funny!
Thunking, whining, chugging. Lights go on and off and trhen it's done! Those lovely people at the Royal Marsden continue to be kind, friendly and professional (apart from that receptionist!).

Day two tomorrow.... and continuing until December 8th!

More info, more radiation

Finally received a copy of the detailed pathologists report. Unfortunately it includes new information that confirms the cancer has gone outside the usual submandibular gland area. It seems to me further confirmation to go ahead with the second operation.

I understand Chris Nutting the radiotherapist is going to include the new area of cancer and extend the RT up to the base of my skull, instead of including my neck.

Chris is on holiday this week, and has not updated me on this directly, so I don't know what the likely side effects will be. Hopefully more news tomorrow when I track down someone at the Marsden who knows anything about my treatment.

Nine days to ground zero

Fourteen days just flew by getting better from the op, having fun at a wedding and now, getting back to normality. No updates on the pathology but it's great to be back in work doing normal things for a change.

Time to get it on and see how things go.

The goal is to be back to perfect health and normality in Jan 2005. Roll on the New Year...

Biopsy results

Well it was worth having the second operation - mixed news on the biopsy results. The gist of which is as follows: In the large scar area in the submandibular fossa (gland area) there are a number, 3-4 of residual focii of ACC. There is also a nodule of tissue sent separate behind the angle of the mandible which shows ACC completeness cannot be certain. 22 odd lymph nodes in the main specimen have been examined, none of which contain metastatic ACC.

I understand this means my short term (five year) prognosis has improved.

Radiotherapy start date

Spent the morning at the Royal Marsden - back in the mould room, where the first step is to create a 'hollow man' shell of my head and shoulders. This is then used to make the plastic shell that holds me in place for the radiotherapy.

Dates at the Marsden
7/10 - Shell fitting
7/10 - CT Scanning
26/10 - Simulator check plan
29/10 - Treatment starts and runs until Dec 10th
Treatment is 5 days a week.

I am going to try to get this started sooner. The impact of treatment is cumulative, I expect at least three weeks of normal living before things get tough. Many people hit their personal low points a week after radiotherapy starts, which will be just before and over Xmas for me. We will stay in London this year for Xmas.

Recovery

I'm at home now and had a good weekend. J is well although we are both up and down a bit. Sarah has been over helping since last Wednesday which has been a godsend. She's off home tomorrow and will be missed.

So what do I look like now? Well, I have a larger cut across my throat (about twice what it was for those who saw the first, running up to below the ear). I look funny in that my face is a bit lob-sided - this will get better though as the soft tissue grows back. I can't talk properly. I have a slur, cannot project my voice and have lost the use of parts of my tongue. This is all temporary though and I should get back to normal over the next few weeks. It makes me feel unusually self conscious though and I do not like meeting or talking to people in public. I get tired if I talk to much (who would have believed it!) and my slur gets worse during the day.

We shall get some biopsy results next week which might have a big impact on my clinical prognosis.

Radiotherapy will start as quickly as possible now.

The trip to Queen's Nottingham

As usual there is lots of officiousness and rules at the Queen's Nottingha, some great staff, however the old school is in force at this hospital (you will know what I mean when you go to hospital - the ones who offer you 500mg of paracetemol when you need a shot of morphine... and want to lecture you on the dangers of addiction when you are struggling to keep the howls in).

What is it with these nurses?
Your anaethetist prescribes a battery of post op pain relief from a 'glass of water' up to self administered morphine pumps (very good) and the nurses start arguing past paracetemol.... they particularly do this around 5am in the morning when you cannot get a doctor to tell em to shut the F up and administer the drugs!

The ward is quite hard core - most people here have a good twenty years on me, and there are many who are much further down the road than me. There is a big difference to how people respond to their treatment in this cancer ward - I think it is because this is just another step on a long road rather than "operation was a great success - you're better now, go home and enjoy your life!". We know we will be back.

Pre Op
Patrick the surgeon is from Tuam in Galway. He is a top three neck surgeon in the UK and very different from many consultants in that he has empathy, presence, charisma and a presidential gravitas. He visits before the op and reassures me, after he leaves his assistant runs through the most appalling list of risks associated with the operation which leaves me dizzy. I swallow and sign the consent....

Finally wheeled down (actually for the first time ever 'up' - very unusual as it seems to me theatres are always in the basement, at Queen's it is on the top floor with a good view). The usual weird conversation with an anethetist who is doing his best to knock you out, while appearing attentively interested in what I do for a living. And another rush like a fizzing in the base of the neck and then I am awake again but different forever.

Post Op
So the op went well, they located many facial nerves (which means we saw them so managed not to severe them), there was a lot more disease than was hoped, they took the mandibular nerve as planned but never saw it, as it they took out big chunks of soft tissue and muscle from under my jaw, leaving my skin overstretched to cover the increased serface area. Amazingly I feel a million times better than after the first op which I put down to whatever anasthetic technology they used. Lots of SMS messages of good will on my phone.

Short term pain for long term gain ?

There is no right answer to whether to have radical surgery. The risks - disfigurement, loss of face or tongue control. The reward - maybe improving long term prognosis but mainly information gathering to see how far the cancer has spread and take out as much as possible.

Getting the train up to Nottingham despite many kind offers of a lift - time to think and prepare.

No-one at home at the Royal Marsden

Spent most of the morning trying to get through to the Royal Marsden to let them know my treatment is changing and to cancel my 1130 slot. The receptionist there just answers and hangs up when it gets to busy. Jeez - they need to spend some time in the Mould Room too!

I give up. the Royal Marsden calls me later wondering why I didn't turn up. I don't know whether they believed I had spent all morning trying to warn them I wasn't coming....

I've emailed Patrick to confirm surgery. Also met some old pals on Friday night and it was weird talking about cancer (hope I wasn't too much of a bore!) but great fun!

Radical Surgery is go

Surgery it is. Had a long talk with original surgeon Tunde. It's a difficult call whether it will make any difference but we're making it now - more surgery.

The plan will be to take out my mandibular nerve, soft tissue and lymph nodes in the neck. It is not too bad cosmetically. The nerve pulls down the LHS corner of my mouth so I will join the ocmpany of Kate Adie, Geoff Boycott and Silvester Stallone, all of whom are missing one of these nerves!

More surgery, in Nottingham this time with Patrick - now we gotta wait until Wed 22nd for a slot.

Radiotherapy input

Chris Nutting is the radiotherapist treating me at the Royal Marsden. I've been trying to speak to him for a long time and my therapy is due to start on September 14th. I've had to play the 'private medical insurance' card to secure a meeting with him which happened today.

Chris and Patrick know each other so they had already spoken, and I had asked my original surgeon Tunde to also have a view on the second opinion.

Chris has also been great to talk to - clear and up to speed on my case. He has already spoken to Patrick and Tunde, and thinks surgery might help before radiotherapy. Radiotherapy is once only treatment in this case, and recurrence of the tumour in the same place is the problem we are fighting.

It strikes me how much of a big difference private medical insurance makes to the choices available and the quality of treatment I receive. Yes, everyone uses the same machines etc. but often I only get time to TALK to specialists when I switch to private care. Most of the professionals are ambivalent about this, they don't seem to understand I need information just as much as I need to be wheeled into another big white machine.

I am no less time poor because I have cancer!

The Nottingham opinion

So my wife and I took off to Nottingham (a couple of hours by train) to seek a second opinion on my treatment from a top three UK ENT oncologic surgeon based at Queens Medical Centre. Patrick has been fantastic since I first made contact. Armed with medical notes and scans he threw the cat among the pigeons by immediately recommending further more radical surgery before radiotherapy. The thinking is that I am young and strong and for some short term pain we may improve the longterm prognosis, we will also understand more about how far it is spread and use this information to fine tune radiotherapy.

Maverick? Research? Life Saver?

The Mould Room (Part Two) and another CT scan

Well this time things did not run so smoothly. The receptionist did not check me in properly (apparently she does this all the time) so I sat in reception feeling sorry for myself for 45 minutes before I kicked up a fuss. The mould room was kicking its heels wondering where I was while I was in reception hating everyone for not respecting my time.

It's horrible having the shell fitted - it is so claustrophobic and restricting, but everyone who works in the Mould Room at the Royal Marsden is just so friendly. Reception staff should have to do a week secondment in their to learn how to empathise with human beings.

After the mould room there was test in the CT room. This is the first real go, where they scan you to plan the actual therapy. Its quite cool technology in that they are able to 'shape' the field of beams to only do damage where they have to.

The medical record thingy

If there is one thing I have learnt so far it is that you have got to keep a copy of all your records. Don't rely on anyone to have your records in the right place at the right time. Get mobile numbers of people treating you if you can so you can call them direct when the beaurocracy gets in the way of treatment. If you have a mobile and can call it it may save you hours of waiting or needing to come back for another apointment!

Off to Nottingham for an alternative perspective

Patrick Bradley is a leading light on ACC in the UK, he is also a top three head and neck cancer surgeon. Imagine my surprise when I sent him a tentative email to receive a warm and nearly immediate response inviting me up for a consultation. We're delighted to be off to meet him for a consultation on Sep 7th in Nottingham (armed with all my medical records if I can pull them out of the clutches of beaurocracy). Thanks to Markie for digging him up as a contact for me, and also to Patrick for being so immediately approachable.

A Fine Needle Aspiration

At St George's again today for an ultrasound and another Fine Needle Aspiration or FNA. This is painless and just like an injection but instead of pushing something into you, they suck something out! Happily shadows in my MRI scan turned out to be nothing when looked for on ultrasound. Just more time sitting around reading books in a particularly drab and depressing holding pen when there are a million better things to be doing with my time.

The Mould Room

Had my first visit to the Royal Marsden yesterday. Great staff who were really friendly. It does not however cover up the fact that nearly everyone attending is there with very serious intent.

Basically the radiotherapy treatment involves some interesting practical difficulties because they need to be able to shoot radio beams into my neck with an accuracy of less than one millimetre. They do this by bolting me down to a computer controlled table by a big perspex cover that tightly holds my head, neck, arms and chest in place. This perspex cover is moulded to my body so they make a unique cover for me. So yesterday I spent the morning in my very own moulding session in the ignominiously named 'mould room' at the Royal Marsden in Fulham. getting completely covered from head to chest in dental moulding clay and plaster of paris (they leave a little hole to breathe through and put a stocking on your head to cover your hair). It is a bit like (I guess) an extreme beauty therapy!

Launch Day One

Hello there. I recently got diagnosed with cancer and found I was telling so many people the same things that I thought I'd try this.... before now I have been through a bunch of tests and surgery to get to here. .. So a quick recap.

I found a lump in my neck and went to my GP. They bounced me to St Georges ENT (Ear Neck & Throat) clinic as an urgent case to see what was up.

Following various ultrasounds and an FNA (Fine Needle Aspiration) it was decided this was a benign lump - all was well we smiled and relaxed. It could be whipped out in about four months or so on the NHS. I luckily had private medical insurance and did not want to wait as the lump was uncomfortable so I jumped into private healthcare and had the lump out in a week. Surgery went well, they removed the lump and the sub-mandibular gland it was attached to.

Unfortunately the biopsy came back as positive for a malignant tumour by the name of Adenoid Cystic Cancer and odds rated at 95% chance of surviving the next 5 years and a 40% chance of being around in 15 years.

So, two kids, one starting schoool next week, a loving happy family and a cancer that is likely to kill me sometime. Sounds like a movie script. Next step is to enter the world of radiotherapy treatment which starts on September 14th.

I am going to keep this up and see where it takes us.