Taking Control…When It Seems Lost

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From: "MC"
Date: 13 May 2008 14:57:57 GMT+01:00
Subject: update

Dear Relatives and Friends

I am here at home once more and going quietly out of my mind. I had the operation to improve the shape of my ‘new’ oesophagus on Friday 10 and was released on Sunday 12. The surgeon was happy with the new shape and has given me strict instructions not to swallow anything if at all possible until I go back next Tuesday 20 May for swallowing tests. The reason I am given is that there has been so much work done to my throat that if I use it before it has settled down there may be considerable scarring which could seriously compromise my swallowing. If these are successful I will transfer to real food and start to learn how to talk again. I have of course the usual scar on my neck from ear to ear. As is the modern way it is stapled rather than stitched and does not leak too much. I think I have had my throat cut more times than all of Jack the Ripper’s victims. I should have asked if a zip could be fitted which would make things so much easier in the future. So here I still am pumping ‘food’ in to my stomach via the usual pipework which process still takes 15 hours a day.

As I cannot get out and about much I am stuck here and can get ahead of admin for a change. Tax returns are being prepared, old papers and files being shredded, and I am even playing about trying to improve my IT skills. God it’s boring.

Ch is still bearing the brunt of my incapacity and is looking after me exceptionally well. She even gets me off my *rs* to go for a short walk in the park each evening. She knows what is good for me – unfortunately. Next update will follow shortly after I get home from next weeks programme.

Love, best wishes, regards as the case may be MC, Ch & Casper the cat

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From: "MC"
Date: 25 May 2008 11:24:53 GMT+01:00
Subject: update

Dear relatives and friends

As usual there was a hiccup in that my test date was moved from 20 May to 21 May. This was apparently because I had expressed my preference for afternoon treatments and swallow tests are only done in the morning. No one bothered to check if I could do a late morning appointment but there we are. The best news is that the test was a success. The barium went down smoothly; the flow looked just like a waterfall with a lovely curve as went over the edge and there were no leaks from the patch in my oesophagus.

On Thursday the consultant confirmed all this and I graduated to yogurt/ice-cream and pureed vegetables (Thursday lunch) with instructions to build up slowly to normal diet. When asked how slow was slowly I was advised that no particular time scale but as I felt comfortable I could move on. When pressed it seems that we are looking a couple of weeks.

I have a load of high calorie supplement drinks to augment my initial low level intake. These are meant to taste of vanilla, chocolate, coffee, banana, fruits of the forest etc but from the few I have had so far the predominant taste is sweetness.

On to Friday and the speech therapist arrived. The feeding tube was removed (bliss) and the one way valve through which I will be able to divert air flow from my trachea to oesophagus and produce some semblance of speech was fitted. I also have a smart looking grommet which keeps my stoma open and which has a filter to clean and humidify incoming air. It is a little uncomfortable but this will pass. It is only now that I can fully appreciate the restrictions imposed by the tube feeding system. To be able to walk around without having to constantly check tube not catching on something and to be able to turn over in bed are freedoms the value of which are immeasurable. Lunch and dinner included ordinary vegetables. Saturday morning escape with my out-patient appointment card (10 June) clutched in my hand. A cheerful farewell to all the staff (my bete noire was not on duty all the time I was there) who wished me well.

Home is heaven. Ch brought me up to date on all news, walk in the park: soup, omelette and lemon sorbet for dinner. Even Casper the cat seemed pleased to see me. Ch admitted that she had not been quite as assiduous as she might in giving him his daily brushings and I realised that the reason for his welcome was that he expected the usual treatment which he got.

So there we are to date. It is lovely to be able to write a wholly positive note for a change and I am looking forward to speech therapy here at home and the return of a voice. I must warn you though that up until now I have not picked up the telephone when it has rung and no-one but me in. This will change when I have some speech back as callers will become the targets for me to practice upon. The first thing they will notice is a type of garbled dalek speak as I try to get airflow diverted and form the ‘new’ top end of my oesophagus and facial muscles into a suitable shape to enunciate the words I intend to say. This enunciation may not always be successful so it may be some while before what I mean to say is what you hear. Please bear with me if it is you at the other end of the telephone as your call is important to me. Next update will follow after out-patient appointment.

Love, best wishes, regards as the case may be,
MC, Ch and Casper

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From: "MC"
Date: 11 June 2008 17:09:39 GMT+01:00
Subject: update 11 June


Dear relatives and friends

Follow up yesterday went well. Consultant (as am I) is happy with swallowing and speech is coming on apace. I have now eaten my whole range of preferred foodstuffs save for rack of lamb which is on the menu this evening by way of celebration. Ch has a fridge full of Cow & Gate purees and rusks which she can deal with as she will.

Speech is getting better slowly. It is still erratic as I have to close off the stoma in my neck by putting my finger over it, the pressure of the outgoing air then opens the valve between my trachea and oesophagus, I then have to shape my ‘new’ voice box to form the necessary syllables so that Ch can understand what I am trying to say. What often happens is that I forget to breathe in before starting the process and have to restart all over again. Never fear – I will get there and if you hear a garbled voice at the telephone it will be either me or Gordon Brown. Please do not hang up before you find out which of us it is. The stoma is a little smaller than the consultant would like so I am trying to stretch it by fitting a sort of grommet at night. If I cannot stretch it physically it might need another very minor operation but that will be merely an overnight job rather than weeks on end.

Ideally I would have some radiotherapy to go with the operation but as I had a load of this last time around at the end of 2005 my neck is too clapped out for another blast so I am spared this. No chemo required so I can just concentrate on healing and putting some of my lost weight back on. The dietician tells me that my BMI is satisfactory and within acceptable range. I think I am too thin especially as my trousers hang off me unless I wear a tight belt. As I need not and will not buy new clothes I will have to expand in to those I already have so chocolate profiteroles and cream are now part of my approved diet.

The other good news is that my follow up reviews will, hopefully, be passed back to the Chelmsford ENT team for the next six months which will avoid all the time and money consuming trips to Charing Cross. I am already in contact with speech therapist here who I see on a weekly basis and if the ENT team take me on I will be delighted. I do not think I upset them too much last time around so I am hopeful in this regard. All that needs be done now is to have a scan to define what things are like now so that there is a base to work from should any further problems arise.

I hope not to be in touch for some while now and in the meantime our thanks for all your prayers on our behalf and messages of good will to us both. Christine has been a tower of strength and has been putting up with my grouchy moods. Now I no longer have any good reason to be grouchy I will have to mend my ways and revert to the kind considerate loveable chap I am sure you all recognise.

Love, kind regards, best wishes as the case may be

MC, Ch & Casper the cat.

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From: "MC"
Date: 5 September 2008 15:16:37 GMT+01:00 Subject: update 05 September

Dear Relatives and Friends

As expected I was passed to the Chelmsford ENT team for ongoing monitoring and I had a CT scan 13 August to set the ‘base line’, as it were, from which to measure ongoing changes to my head neck, throat and surrounding areas. We met with the Consultant, and some of the team, yesterday and he had a poke around my neck and compared with the scan. There is clearly a lump on the right hand side of my neck just by my carotid artery. Whether that is a growth or is merely part of the scar tissue from the previous procedures it was not possible to tell.

The main problem is that the whole of the area around my lower jaw and upper throat is a mass of scar tissue which still swells and shrinks (it is only 4 months since my last procedure although it feels like 4 years) and it is pretty nigh impossible to state categorically if a lump is either a scar or a cancerous growth. He has reviewed the position with the rest of the ENT team this morning and while the general consensus is that the lump is due to scarring they cannot be certain so a biopsy is to be done. This will be by way of a small sample being extracted under ultrasound direction and then off for analysis and then follows the verdict. Other than that progress is fairly good. I can eat pretty well anything but have to chew extensively to reduce all to small mouthfuls to enable me to swallow down my ‘new’ throat and the process of eating itself is not much fun – the upside is that I have not put on a lot of weight and have a healthy BMI.

Verbal communication is still difficult. This is partly due to my difficulty in talking in that the diversion of air to, and production of sound from, my throat is variable and is also due to the poor quality of the listeners hearing/understanding. Young people in general have little difficulty in understanding what I am saying and we can have quite a normal conversation but older people, such as I, seem to listen to a series of words and, when they come to one they cannot ‘translate’ stop listening while trying to work out the individual word so miss the remainder of the question/statement. We older people also seem to ‘read’ speech and when we use sloppy sentence construction a couple of ‘missing’ words make the whole sentence meaningless. This is particularly frustrating for listeners. I have got used to it and while I try and speak slowly and in well constructed sentences this does not always come across to the listener. Such is life and practice is the way forward.

The hole in my neck is fairly stable. I have to clean up at least once a day. This is a fairly boring procedure and takes about 20 minutes but, as this is less time than a lady of my acquaintance spends on her make up, I consider it time well spent. Next update will follow immediately after results of biopsy so keep your fingers crossed on our account.

Love, kind regards, best wishes as the case may be from
MC, Ch and Casper the cat.

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From: "MC"
Date: 2 October 2008 16:13:27 GMT+01:00
Subject: update 02 October

Dear Relatives and Friends

I had a biopsy on 24 September and, after a week of sleepless nights, we were all ready for the results at my appointment with the consultant this morning. A huge anticlimax – the sample was too bloody to be sure one way or the other so it is back for another biopsy and start again. On the one hand this is a disappointment as we were all set to put various matters in hand dependant on the outcome but, on the other hand, at least there was no positive indication of cancer so there is still hope. When the biopsy/follow up appointments are to take place we do not yet know but the plan is for sooner rather than later.

One of the reasons that the biopsy did not work is that it was done by extracting a few cells from my neck by means of a needle placed in position by ultrasound direction. This is the less invasive procedure the other being by way of a minor operation opening up the neck and cutting out a sample. The problem is that my neck has had more than its fair share of Sweeney Todd treatment over the last couple of years and is not in good enough shape for more cut-throat work unless absolutely essential – taking a biopsy is not in that category. Apart from that things are pretty flat around here. Until we know which way we are going we are just muddling along taking one day at a time and enjoying the odd glimmer of sunshine and generally idling as usual.

As soon as there is anything to report a further update will be winging its way to you and, in the meantime, love, best wishes or kind regards as the case may be from
MC, Ch & Casper the cat

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From: "MC"
Date: 22 October 2008 18:23:40 GMT+01:00
Subject: update 22 October

Dear Relatives and Friends

I had a CT scan this morning and the result was bad news. The swelling to the right side of my neck had grown and the variation from the size/shape/texture of the previous scan indicted that the growth was a cancerous tumour without any need for a biopsy. The radiologist spoke with the oncologist at the telephone and they are meeting Friday to discuss. I have volunteered to attend but whether they want me there or not at this stage I do not yet know. The waiting therefore continues but at least we now where we are starting from rather than being in limbo

It is exactly three years to the day since I escaped from Broomfield following the surgery on the original cancer under my tongue so, notwithstanding that this date is that of the anniversary of my birth in 1946, it has not proved to be as happy a date as should theoretically be the case over the last few years.

A full update will follow as soon as the way forward is determined and in the meantime love, best wishes or kind regards as the case may be from
MC, Ch & Casper the cat

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From: "MC"
Date: 4 November 2008 18:01:40 GMT
Subject: update 04 November

Dear relatives and friends

Things have been moving along apace since report of 22 October and rather than virtually daily reports I decided to wait until the whole programme had been put in place. This is now the case. Following my CT scan and the bad news we met with the oncologist (Dr S T – a delightful chap) and the plan is for a series of chemotherapy treatments with the aim of shrinking the tumour and then surgery for its removal. Radiotherapy is not an option as, following that which I had after my initial throat cancer in late 2005, the tissue is too damaged to take another dose. The recovery rate from this treatment is 80% so I am aiming to be one of the 4 rather than the fifth. I go in to hospital as a day case tomorrow to have a Portocath (the pump for the chemo into my blood stream) fitted.

On Friday I go back for the first dose which will take some six hours. Then home for d.i.y. infusions for an hour a day for 4 days. Then back to get pump removed. Two weeks off and then repeat the cycle three more times. This takes us up to 14 January 2009 so that is our usual winter holiday in the sun gone for a Burton. For those of you who are technically minded/interested the treatment I am having is called TCF. This is a combination of Taxotere, Cisplatin (the 6 hour infusion) and something called 5FU (the d.i.y. hour a day at home one). As all these will be knocking out the cancerous cells I will also be getting Neulasta or Granocyte to keep my immune system in shape. What physical or mental effect all this will have on me is not known so we will just have to ‘suck it and see’ as they say. At least the birds in the back garden will benefit as they will have continual food supply over December/January: something which they have not been used to very often.

In the meantime Ch too is suffering. Pulled a muscle in her back just to add to the strain and then had a crown come away and is having to undergo a series of painful dental interventions while getting a new crown made. We are remarkably similar to the Highway Code sign indicating that aged people are to be expected ahead so please take care. As you can imagine we are not very good company but have been encouraged and heartened by the messages of support and sympathy from you which helps enormously in keeping positive and aiming for recovery.

With love, best wishes or kind regards as the case may be from
MC & Ch.

p.s. I asked Casper the cat if he wished to be included in the valediction but he gave me a look as if to say that he no longer wanted anthropomorphic characteristics applied to him so I have left him out.

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From: "MC"
Date: 9 November 2008 15:02:44 GMT
Subject: update 09.11.08

Dear Relatives and Friends.

This comes in chronological diary form as much has been happening and if I try as a narrative I will get in a muddle or more of one than usual you may be thinking.

Tuesday 04
I thought I would be in for a quiet day and relax but not to be. I was given the job as driver/porter for major shopping expedition to Tesco to load up for siege ahead. A large trolley was required (as was bank balance). At least got me out of any ‘poor me’ syndrome for a while.

Wednesday 05
In to hospital at 1100hrs (a civilised time) for Port fitting. This is not, as I had thought, a full pump unit but is a subcutaneous implanted access port for frequent injections in to main vein via a catheter. It is located just below my right collar-bone. The surgeon was the same chap who did my carotid endarcharectomy three years ago as was anaesthetist. The latter recognised me but the former did not. Probably would have if I had shown him the side of my neck where he last worked on me. The operation was under light anaesthetic. My only memory is of the surgeon fairly forcibly pushing the access port in to place and me thinking why he did not make the incision slightly larger. I presume it is because the last thing one wants is for the kit to move about and fail so the tighter the fit the better. Recovery was fairly straightforward and away at 1700hrs. A bit painful but bearable

Thursday 06
A quiet day at home. Little bit of shopping and messing about but not too much.

Friday 07
In to hospital 1100 for chemotherapy. Started by fitting the external parts of the injection system to which the various bags of chemicals are attached from time to time. First off was a cocktail of various bits and pieces which only took a short while. Next were Docetaxel & Cisplatin, the main cancer busting duo, about an hour and a half the pair followed by a 4 hour session of general fluids (I think – see comment in para 1 above). The final treatment was the attachment of a bottle of Flurouracil to the system. This will be in place for 5 days. It contains a 240ml of liquid which is under a little pressure which pushes the drug in at a rate of 2ml (this is not an error) per hour. The bottle is held in a small bag attached to a belt and from the bottle a line goes up to the port. This container is similar to a ‘man-bag’ I am told by she who knows. Looks more like a colostomy bag to me but who cares if it does the job. Got away at 1900hrs and home for dinner – steak followed by chocolate pudding – delicious after only having had coffee during the day. To bed beginning to feel a little rough but not too bad.

Saturday 08
Woke about 0500 feeling sick. Had been issued with tablets to deal with just this eventuality and started course immediately and back to bed. Feeling of sickness passed and remains at bay. Generally feeling pretty ropey and sleepy during the course of the day. Meat and salad for lunch (I passed on pudding- fruit & yogurt, not my favourite but allegedly good for me). Fell asleep watching Midsomer Murders during the afternoon (has it really come to this). Duck & chocolate pudding for dinner. My senses of taste and smell are a bit variable but in the main I have a pretty good idea of what I am eating. Early to bed. While all this is going on Christine is having her own travails. Back improving but tooth problem worsening. When last put in temporarily was probably fitter too tightly and causing considerable pain especially when trying to eat. Thus eating less and feeling generally woozy. She has appointment to see dentist Tuesday but we will try to get to see him tomorrow and get the thing taken out, if that will ease the pain, until the new post/crown fitted and at least she can get some food down.

Today 09
We are sitting about doing nothing much and waiting which is the most depressing part of the whole experience. I can take comfort in knowing that my treatment is under way and that the drugs are attacking and reducing the cancerous growth so there is some progress and hope; Christine can but sit and wait until tomorrow morning before getting the phone to her dentist. Future I go in next Wednesday, 12 th, and get bag removed (hurrah). The port itself remains in place but will be no problem and the whole treatment cycle starts again on 28 th.

To end on a lighter note Ch has taken a photo of me wearing my man-bag paraphernalia. I suggested it made me look like John Wayne, she thought a traffic warden. If you would like a copy so you can make your own judgement please let me know, on second thoughts maybe not. If you do not wish to receive any more of these circulars please let me know and I will remove your name from the list. Must be getting a bit repetitive and tedious to receive these continual tales of woe.

Love, best wishes or regards as the case may be from
MC, Ch & Casper the cat, in whose good books I am again having made his breakfast this morning.

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From: "MC"
Date: 25 November 2008 15:21:47 GMT
Subject: update 25.11.08

Dear Relatives and friends

Much has happened since 09.11.08.
Things went on quietly for a while. The Flurouracil bottle was removed 12.11 as per plan but things were beginning to turn against me as it were. Appetite deteriorated, eating became a real effort which, for me, is an unusual state of affairs. Sleeping badly, no energy. The problem got really bad when my digestive system went awry. It became like the biggest flume at Disneyworld and everything went straight through without touching the sides with about a 20 second time lapse between in and out.. Dehydration set in in a big way so it was back to hospital as in-patient 15.11 and on intravenous drip while the diarrhoea was being brought under control. Simultaneously feeling sick and generally dreadful.

Released 17.11 and back home – still spending an inordinate amount of time in the loo but gradually back to what now passes for normal. This is a state of being generally lethargic, insomnia (thinking too much about what might/might not happen during the night time hours) and being constantly aware that the cancerous lump in my neck is still there. It does not feel as though it is getting any smaller, but there again it does not seem to be getting any bigger. I spend a little time each day getting some of my affairs in better order than they were. I always promised myself that I would get everything in order once I retired but there were always so many other things to do that never quite got around to it. Doing it now does seem to be looking on the dark side but it is too bad as has to be done anyway. Eating still a chore as no appetite and food does not always taste the way it used but I generally manage two two course meals each day with a few food supplement drinks. Slowly getting optimistic.

The thought of three more courses of chemotherapy is pretty horrific but the alternative is not too great either. The consultant says that he can adjust the dosage of the drug cocktail so as to reduce the adverse effects so I will be having the next tranche and see what that brings. In the meantime I know that the drugs are doing something, what I am not wholly sure, as my hair has begun to fall out so I will be in the market for a woolly hat for the cold weather which is upon us at exactly the wrong time (this is not a hint as to what Christmas present I might like but merely an observation) We see the consultant this afternoon for him to check up on progress and get organised for the next chemo session which is programmed to start this Friday so it is fingers crossed that it will not be as bad as the last. Will advise as to progress in due course.

In the meantime Ch is looking after me exceptionally well and giving me the most ambrosial food – venison, rack of lamb, profiteroles, chocolate and cream are high on the menu. Her own problems are still ongoing. Her back is still troubling her a little and her tooth is still a ‘work in progress’ as it were but should be fully operational in a week or two.

Love, regards, best wishes as the case may be from
Mick, Christine & Casper the cat

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From: "MC" Date: 12 December 2008 16:39:10 GMT
Subject: update 12.12.08

Dear Relatives and friends.

I am delighted to report that I am fully over chemo session no.2. The session itself started 01 December with the usual full day in hospital being infused with various chemicals and back home in the evening fitted with my ‘man bag’, containing the dreaded Flurouracil, which was at half the concentration of last time. Unfortunately this did not mean that I only had half the after effects of those the first time around but about three quarters which was a vast improvement. Knowing from the first time around what to expect I was prepared with the necessary counter acting drugs to hand and things ran their course pretty much as expected.

One thing I did try for the hospital treatment was the cold cap. This is a tightly fitting helmet style piece of headgear through which is passed a continuing flow of freezing water for the two hour period during which two of the drugs are being infused. It should be called an ice-cap. It is the most horrific experience. If you can imagine wrapping a couple of bags of frozen peas around your head and putting it in the freezer for a couple of hours you will get the idea. I could almost feel ice crystals forming in my brain. Its use is to try and ameliorate hair loss and it can be successful in some cases. It was not in mine, possibly because I did not avail myself of the opportunity during session 1. Be that as it may hair loss is pretty well complete now. I have a little ‘bum-fluff’ on my head; whether that is the remnants of my pre chemo hair or a little new growth I am not sure – I suspect the former but time will tell. This is not quite the best time to lose all one’s hair but global warming should help so please keep your 4x4’s and SUV’s going as fast as possible. The cancerous lump still remains much the same size but feels more ‘solid’ so may be separating from the surrounding tissue.

In the meantime Ch is in fair physical shape. Back problems are pretty well a thing of the past and after a terrible four days when her gum became infected that too has now passed and her new crown has been refitted and, hopefully, will remain securely in place for many years to come.

During all this upheaval she has managed to complete the Christmas present shopping, address and post all the Christmas cards (except for the foreign bound cards which are my responsibility – this is not due to altruism on my part but to ensure that we only send lightweight cards abroad to keep down exorbitant postage costs) and keep the household generally running smoothly. I have merely been her driver and porter from time to time as required and fit so to act. I am very fortunate. Chemo session no. 3 (of total 4) begins 21 December and finishes with removal of ‘man bag’ on 23 December so, based on experience to date, a fun Christmas and New Year are on the cards.

Love, regards, best wishes as the case may be from
MC, Ch & Casper the cat