"Im a walkin' in the rain" but I'm no "Runaway"

Unlike Del Shannon and despite this morning's heavy rainfall and eventual dank prevailing conditions, I was happy to be out and about walking the dogs with family and friends on Velmead, part of Eversley Forest near Church crookham. This photo shows Fiona with Rupert and Geraldine with Chaka as we returned to the car park at The Forresters. With such lovely people in my life there is no way I am going anywhere just yet other than soldiering on against Goliath and his cohorts all of whom are doing their damndest to make life as difficult as possible but failing miserably. Take heed you big ugly lug this guy's no 'runaway'!
 

Rupert ("my leg's much better1") and Fiona Laidler with Chaka ("where's it gone?") and Geraldine Edington

Yesterday saw a visit to The Foutain Centre in Guildford for some much needed alternative therapy from some more wonderful professional people prepared to donate some of their valuable time in care of cancer sufferers and carers: I had a session of Accupuncture and Shiatsu Massage with Stuart Ravell followed by an Art meditation with Fiona Channon, whilst Geraldine enjoyed a lovely unexpected 'Allsorts' of Reiki, reflexology and a hydro therm massage with Felicity Alonso. Coming away relaxed and pain free we headed to the, you guessed, Crown and Cushion for a couple of drinks and some delicious sea bass fillets washed down with a delightfully light Vinho Verde. Unfortunately by evening time my pain had returned and later that night the vomiting started: Talk about swings and roundabouts!


Memo to self: Despite my love for over indulging, in persuit of weight stabilization of course, I must remember to be kind to myself in order to manage the food an drink intake versus the medication feed back!!!!!

Thanks for the therapies!

Today sees me once again taking full advantage of the alternative therapies on offer at The Fountain Centre, Guildford where I am booked for my first two sessions since the holidays: Accupuncture/Shiatsu massage with Stuart Ravell, who amazingly fixed my two supposedly arthritic shoulders; a legacy from twenty years of rugby (hope he has some success with these current pains I'm now suffereing through my cancer and it's treatment), and Fiona's fascinating Art Meditation classes which produced our Christmas/New Year card last year, and has reignited my artistic tendencies. I hope that Stuart and Pethidine can control the pian to allow me to benefit fully from the meditaion though I might just like Fi's soothing hands on my shoulders again to help me relax.

Willow Bracket

Turkey Tail

As some of you may have picked up on, one of my retirement hobbies is amateur mycology or fungus spotting (Panic not ye of so little faith I don't even own an anorak!) which initially back in 2006 I combined with my love of photography and as such I organize, on a strictly informal basis, a group of local enthusiasts called the Mushketeers (but please keep that under your hat). Earlier this week I managed two outings to local known hot spots where, although it's not ideally the best time of year for fungi, we had some limited success and anyway the fresh air, albeit a bit dank at present, the good company and thye pub lunches all serve to raise my spirits at what is currently quite a difficult time. Apart from the more regular participants it was wonderful to meet up again with Sally and Ian Tyler, old hands who have been away on a sejourn to Oslo for a couple of years and are now back home in the UK: As ever, in days gone by, the first view as you enter the car parking area is Sally's pert bottom sticking inthe air as she endeavours to tie her boot laces; some things never  change, thankfully! (and no I don't have photographs and ceratinly would not serve such embarrasssment on Sally even if  I did - not much anyway, as I go off in search of my files..... lol)

Yellow Brain Fungus

Mushketeers Julie and Mike

The dog walking community still flourishes on regular jaunts and I have now nearly finished oraganzing our postponed Skittles evening at the Frog and Wicket in Eversley.


A very pleasant interlude yesterday involved meeting up with my daughter Jennie, who, with a rare window of opportunity managed to get away from her hectic schedule as mother of two, personal trainer and running club organizer, and avid concert, as in gig, goer, in order to pick up me and Chaka for a quick walk around Minley and a pub lunch at the Crown and Cushion (surprise, surprise!)


All in all quite a successful and satisfying week and gauranteed to deflect the spears and arrows of Goliath and his minionss that have been raining down on me since Christmas.


One immediate and not so positive Post Script is that Geraldine came home and unexpectedly annouced she had been to see Dr Robinson and was now on two weeks sick leave; him having expressed to her his surprise that she'd manage to hold this long. Enter guilty feelings now on my part engendered by how unobservant I and others had been (Jenny and I both agreed at lunch yesterday that Gerladine seemed to be coping much better). But it's partly due to G being able to shield everyone from knowing exactly how she is feeling for my sake. I would have hoped that friends and colleagues would have raised the alarm bells even if she was prepared to soldier on courageously. I sense it's not a particularly healthy state of affairs despite all her good intentions to save me any more worry.


As for that pesky pussycat Bailey, he's continually on my case..........

.

It's Your Party........

.........And I'll Cry If I Want To!






Meaning that I was gutted to have to have cried off from attending Sarah's (my niece) 30th birthday party at the Mandeville Hotel in Mayfair, London last night. After the trials and  tribulations of Christmas and the past weeks and following on so soon after a bout of chemo, it was always going to be touch and go whether or not I would be fit enough to attend this 2nd family gathering. In the end, after what could well have been a more serious car crash when collecting Geraldine from work on Friday, caused by my fatigue and the effects of pain, and a walk with Geraldine and Chaka on the morning it was blatently apparent I was not up for it under any circumstances. A great shame as these South Africans and their friends certainly know how to party.


By hook or by crook I did manage to persuade the hotel to organize a litlle surprise by way of Champers and a greetings and I was reliably informed via an image text message from my daughter that it was joyously received. (The photo will be posted when this wrinkly ol' silver surfer works out how to get it off his basic cell phone - where have I put that USB lead? - and onto his more familiar laptop)

Many Happy Returns for the day Sarah!

Andy, Jennie, John, Phillip, Valerie, Mike. Sarah and Tersia
I raise a toast to 'The Mums and The Daughters' (pictured)

Later today I have planned, with a lot of help and co-operation from Geraldine to meet Mike, my brother, for a quiet tête a tête lunch nearby home at the Crown and Cushion at Minley before he and Tersia fly back to Jo'burg on Monday and theres's no way I am missing that: After all we have to plan our trip to New Zealand for the Rugby World Cup next November. (In my head I can hear the gentle reminder from my registrar to "take one day at a time David"). Hey, but surel you must have goals to aim at if you want to stick around long enough, especially if England are going to beat The All Blacks in the final?

Brothers in arms, well lubricated aprés déjeuner at the Crown and Cushion

So don't worry folks, although it isn't proving any easy task at the moment, the battle with Goliath is far from over yet as long as I can continue to manage the debilitating effects he's throwing my way at present.


Looking ahead I have to tolerate two more cycles of chemo, a rest and monitoring period after the end of trial CT scan and possibly, because it has proved so effective up until now, another later session of the EOX combination of the Real3 drugs; or even another completely different clinical trail if available and if I meet eligibility criteria. Anything that gives me a decent quality of life will do for me; so back to the one day at a time philosophy which has served me so well and will no doubt decide the best way forward ......that's onwards and upwards on this map which I'm plotting as I go!


Time to see if I can keep down my porridge and pills and not be reminded by the girls about saying 'it's only a bit of morning sickness': Apologies ladies; it will never pass my lips again! LOL


STOP PRESS: Over a fabulous lunch session Mike informed me that Sarah and Phillip are expecting their first baby in July. Fanatastic news of a joyous event to look forward to; congratulations to you both!

Round 6 of 8

The best way I can think of summing up my feelings as I approach my 6th cycle of chemo later today (an event about which, up to now, I was not facing with a particularly positive attitude because of the down turn of recent days) is to copy some recent MacMillan forum correspondence with a couple of special virtual friends from overseas: Liz in Madrid and Pilla in Oslo. Together with Geraldine's constant support and an  earlier consultation with the research team at St Luke's yesterday, these exchanges have lifted my spirits and put me in a much better frame of mind to press on regardless and continue taking one day at a time in the knowledge that out of the last 187 days the vast majority have been distinctly good days!

'Positive' is good, but if I remember correctly from Physics lessons you need 'Negative' to complete the circuit and light the bulb, And that's the 'potential difference' between me now and me then! :o)

A post Christmas message from Liz in Madrid:

Hi David. Happy New Year to you!
I hope you're not feeling too grim, it's awful feeling below par, especially when you're looking forward to a fresh kick in the teeth this week with more chemo. I suppose you're more adept at treating side effects but also have a body that is more resentful as each cycle passes. Tell me which your worse symptom is - or post on the forum - & let's see if someone can give you some advice from their experience. Patients & carers sometimes know a whole lot more than the cancer team at the hospital!
We've had a pretty emotional time of it, of course. Do you know about the uvas de la suerte? It's the tradition here that with each chime of the clock at midnight on NY Eve you eat a grape. Get them all down & you will have luck for the year to come. Pablo's 1st symptom was March 2nd '09, but on the NY Eve before, as the clock struck midnight, he got about 6 grapes down then gasped...took a big glug of Rioja...put a couple more in...grabbed a bowl & brought up a load of wine/grape mash. We all looked on aghast, thinking he was vomiting blood! Then had a bloody good laugh at the silly old codger! Life went on, more Rioja flowed, all was forgotten. It wasn't until 31.12.09, a year later, a month after Pablo's release from hospital post-op, still unable to get grapes down, that Tina remembered the events of the year before & with hindsight, of course, it was probably an early sign of something amiss down there. This NY, therefore, we brooded on this, his last one with us in a frail state, this one without him, plus all the previous years when we'd been together & had memorable times.
Bitter sweet, sad, heart-wrenching...but through it all I felt we had to go through a tough, emotional time in order to start the year afresh. So I feel stronger now, am fired up to go forward, have sooooo much to do I can't wallow in self-pity.
Thanks for asking, David. I hope you've been able to enjoy things to the full.
All the best for 2011!
Love
Liz xxx

The resultant post on my (aka cybershot) Macmillan forum thread to the above suggestion by Liz:

 "Thank you all for your recent kind thoughts and wishes and It's heartening to know that together  we are all fighting through our individual battles in this virtual community, and helping each other when the going gets tough.
I have just had a very gentle and sympathetic PM from Liz, whose husband Pablo died recently having courageously fought OC to the last, in which she sensibly asked  a question which I, up until now had not verbalized: "Which is the worse symptom/effect?" Knowing that we all suffer variously from common issues I wasn't at first sure about the correct answer to this question, but, as we both realised, it would be useful to all of us if I tried to put my feelings about this into a forum post:
In my present situation, as I approach the 6th out of a total of eight cycles of review clinic followed by chemo, spread over 6 months, with a very heartening mid term review behind me, I would say that individually none of the current difficulties on their own would cause me very much concern and all can be managed with the help of the support from the professional team, family and friends. But when they combine forces to oppress and demoralise you they form a formidable opponent which after time, and from time to time, cannot fail to drag you down and make you feel quite wretched and unresourceful. 
That's just about sums up how I feel about:


-The nagging, persistent chronic pain in the area between my shoulder blades and through to my sternum which roams around and becomes intermittently acute in various places; the main factor in the significant amount of lost sleep. (the latter also perpetrated by steroid intake and the sometimes over-positive mental attitude; bordering on the hyper active  - that's an interesting one wouldn't you agree?)
-The constipation caused by the high dosage of pain killers; currently Tramadol.
-The nausea and sickness I am now experiencing for the very first time; since switching to Tramadol.
-The very much increased level of fatigue and anemia which really makes it difficult to cope with everything else.
-Laryngeal palsy, which, together with the aforementioned pain, I believe results from the cancer's effect on the Vagus nerve system which runs throughout the thorax.
-Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia, which causes very sore fissures in the dried out soles and palms (not to mention very brittle, and now some blackening, nails).
-Mouth ulcers come and go; gone at this time thankfully as eating is a chore enough already.


I think that's enough to be going on with and if  I was given the option of ditching just one then the first on the list would be my choice. My fear is that this is going to be the hardest of the management tasks facing me at the moment. Though it is worth reiterating that everything at present has an easily attained remedy reinforced by discussions about best options during clinics.
All views and experiences on this topic would be much appreciated.
Whatever plagues you at the moment I trust you are getting all the help you can muster: We don't have to suffer unnecessarily with the resources at our disposal. If it's not happening for you or your loved ones then make a right b****y nuisance of yourself until it does.
With love and light
David [X]"


It's hard to find the words to express the gratitude sometimes when such lovely people like Liz, who is showing such fortitude in coping with her own recent bereavement, are unselfishly prepared to help, advise and support others with the insight achieved from their own suffering and anguish as patients or carers.

This is exemplified also in an exchange of messages between Bergen [Not Oslo - my apologies Pilla; and now I know why, not knowing which part of the US you are from, I refrained from making a reference to "The Yankee Abroad" ;O) ] and Yateley the day before my latest cycle of chemo on 5th Jan 2011:

Hi David, that was a cute doggy card. I liked it.
I tried to reply to your post on worst symptom, but the system got locked up. I agree with the others. I hate to see you getting down. You're right, it's the ever-changing combination of symptoms that wear at you after a while. Ed says the worst is the hyper-ness and shakes of the steroid. But another time he says the worst is the hearing loss, side effect of the Cisplatin. The 14th we get to find out what the effect of the treatment was. Fingers crossed for a home run! Ed's a big baseball fan, and has decided the cancer is a pitcher, "little c". Ed's the batter.
Good luck tomorrow with your team. I hope they find you a better solution for your pain. Remember the great midway results. As you're from England, perhaps you can think about a cricket match - they go on for a long time, and there are lots of points see sawing back and forth. I'm sure you'll win the ashes in the end!
Hugs, Pilla


My reply to Pilla:

Hi Pilla
Thanks for putting a smile back on my face with your reference to the cricket: I am not a great fan of the game but it's always nice to put one over on the Aussies especially in this particular competition for the Ashes (they are such bad losers), and I immediately thought back to the autumn when our national rugby team did the same thing with a stupendous record breaking win over the 'Wallabies'. What really made me chuckle was; "I'm sure you'll win the ashes in the end!" So you got me in the crematorium already have you? - That's priceless lovely lady - Thanks but no plans yet for the funeral arrangements  :O)
Interesting what you say about Ed's symptoms and side effects especially as I am now, after my ENT referral, officially 'deaf'; tho' G says it's very much 'selective hearing' lol. Yet a recent opticians appointment had me a few points improved on my prescription. Funny ol' world - I just put it down to old age !

I seem to have come down to earth - not so much a crash landing, but just a bit of a bumpy touch down - so not quite as hyper as previously and occasionally feeling a wee bit sorry for myself. However chemo later today (#6/8) will no doubt boost my steroid input again and I'll be up flying high with Ed again soon. Sorry to hear he finds that one of the more problematical side effects - any suggestions from your team how to remedy that situation; with the combination of both a physical and emotional slant to it?

The clinic earlier went well and my first try out (a hour or so ago) on yet another pain killer regime of Paracetamol/Diclofenac seems a vast improvement on previous schemes, especially the Tramadol, so obviously, like so much of this infernal  journey, it's question of trial and error based on good comms with one's 'team'. So now (at 03.00hrs) feeling much better equipped to face that imminent cycle of chemo later today, especially if, now virtually pain free, I can get my weary a**e to bed for a few hours kip and much needed rest.
I bid you good night and please pass on my best wishes to Ed and let him know I'll have everything crossed for him for that home run on the14th.
Love and hugs backatcha
David x

As I entered the Chilworth Ward at St Lukes for the infusion of more toxic cocktails rather than heart warming mulled punches it was obvious that the Christmas back log was still flooding through (65 patients that day to process and only 35 seats available.  So I was lucky to be marched in on time and with my chemo drugs timely processed reading and waiting.  While Geraldine, who had fortunately booked a Reflexology theraphy session in the Fountain Centre downstairs, went off the ward rapidly filled with patients and there were no seats available for carers and relatives.  I wondered what this next session had in store for me as  I was beginning to find the going getting a little tough and this tough cookie was starting to find it was becoming more difficult to cope with as the cumulative effects were proving more and more persistent: The oncology nurse with 18 year's experience who was administering the treatment did remind me that the body can only take so much poison being pumped through the system even if it was doing good in some respects it was also hammering the other parts only Heineken had previously reached.

Post chemo and I am still struggling to get the pain and nausea under control with the fatigue and shocking weather dampening my resolve to get out and about in the open air with Chaka where I feel most refreshed. I am determined that this downturn in events is only temporary but afer a telecomm consulation with St Luke's today (now Thursday) even the recommended appointment with my GP to try another tach is proving troublesome to accomplish.  Watch this space as I cannot afford the luxury of negative thoughts: 'Illegitimi non carborundem' s the Latin pig would say!

 

 

Who or what knocked the stuffing out of my Turkey?

Not that for the last ten years there has ever been much evidence of Turkey on our Christmas menu, preferring to prepare more exciting fare such as venison, wild boar and ostrich, but here we are in 2011 and as I look back on the dying embers of last year I have to admit things are not starting off too well at the moment. Just before Christmas on the advice of the research team I paid a visit to my GP to raise the level of my pain killers as the paracetamol/ibuprofen meds were having little effect on the increasing amount of pain in the areas between my shoulder blades and through to my sternum. Tramadol was prescribed as that which would be less likely to trigger any bleeding of inflammmation and the first thing I noticed was the onset of nausea and sickness especially early on Boxing Day morning (though I did put this down to a certain amount of general over indulgence and particularly over familiarity with a bottle of Drambuie the day before). However as the sickness was presenting before and after this event it became another problem to sort out (more Metoclopramide from the doc), together with excessive fatigue, the return of laryngeal palsy and loss of appetite brought about by losing the edge to my taste buds and everything having the same dull flavour and texture.


As I contemplate Wednesday's next cycle of chemotherapy and the approach of the end of the Real 3 trial my positivity is waning and to restore a balance I have to reflect on what was in the event a remarkably good Christmas spent at my daughter's house in the bosom of my family; my brother Mike and Tersia having made it to the UK from Jo'burg on the second attempt and at the eleventh hour.

William, Jennie and Ellen on Christmas Day

After a session down at Jennie's local pub, I thoroughly enjoyed cooking the Christmas Day lunch - a fully matured 5lb Rainbow Trout, stuffed with fresh herbs and wild mushrooms then oven baked in white wine and vermouth; served with new potatoes and salad (there were traditional veg options which Andy had cooked to accompany his fabulous nut roast)


On Boxing Day we were joined by Valerie (Jennie's mum) and John, and Sarah and Phillip and, mainly for Valerie's benefit as she and John had not managed to make the event in South Africa, were treated to a viewing of Sarah and Phill's wedding video (the highlight being Mike's epic speech) whilst snacking on hot mince pies and leftovers etc. Unable to tempt anyone else into the fresh air Mike and I went for a walk with Chaka in Windsor Great Park

Windsor Great Park, Boxing Day

In the afternoon we all (except Jennie and Valerie and their partners) returned to Yateley where Geraldine prepared another meal - roast 3 bird (chicken, turkey and duck) crown and all the trimings while Mike anticipated watching the Spurs match against Aston Villa on the telly before they left for Sarah's home in London. Between New Year and Sarah's 30th bithday on the 8th, Mike and Tersia planned a trip to Las Vegas where soon, no doubt, will be watching his annual bonus disappearing into the coffers of the casino magnates (.....money magnets????)

Mike, Sarah, Tersia and Phillip at Yateley on Boxing Day

Our own New Year celebrations at Ken and Christine's brilliantly organized party was abbreviated at around 10pm by my queasiness and fatigue......but I did wake up in bed as Big Ben chimed and the firework display in London started. And as Chaka is allowed to sleep in our bedroom only on this one night of the year, when the local fireworks scare him, I did get more than one kiss at midnight!


Happy New Year to all my family and friends and I hope it will be as pain free, physically, emotionally and financially, as possible.


With love and light
David xxx