Welcome To Tims 2011/2 Blog....... this is a very personal account of two people suffering illness and adversity and through determination and will and lots of positivity , in large overcoming adversity and continuing with life in addition to continuing to run a holiday flat business in the Isles of Scilly , have a lovely family, five grand children and generally smile through lifes little minor difficulties ( HOT news, no 6 a boy due in 6 weeks time ! )
BUT BEFORE I START THE BLOG, COULD I PLEASE ASK YOU FOR SOME HELP ASK YOU READ ON YOU WILL BECOME AWARE THAT A MAJOR MIRACLE HAS HAPPENED IN OUR LIFE OVER THE LAST TWO YEARS, IN APRIL 2010 MY WIFE ANGELA, MOTHER OF THREE CHILDREN AND GRANDMOTHER TO SIX GRANDCHILDREN WAS DIAGNOSED WITH ADVANCE BOWEL CANCER WITH LIVER CANCER FOLLOWING A ROUTINE BOWEL TEST. ANGELA WAS ADVISED BY OUR LOCAL HOSPITAL THAT HER LIVER WAS INOPERABLE AND SHE WAS GIVEN A LIMITED LIFE EXPECTANCY OF TWO YEARS
THANKS TO A FRIEND OF CHARLES'S, A SECOND OPINION AT BASINGSTOKE WAS SOUGHT WHERE SHE WAS TOLD THAT AN OPERATION WAS POSSIBLE AND FOLLOWING CHEMOTHERAPY AND A BOWEL OPERATION AT
TRELISKE HOSPITAL IN CORNWALL, SHE WAS OPERATED ON BY PELICAN TRUSTEE MERV REES IN EARLY DECEMBER 2010 Mr Rees is a modest man especially since he is the very best liver surgeon in the world ( my words ) and the co-pioneer of this amazing liver resection operation when up to 60% of your liver can be taken away
and will then re-grow over the coming few months,... what a miracle story
March 2012 and two years since diagnosis and ANGELA IS NOW FREE OF CANCER , SAYS CHARLES AND " HENCE I AM RUNNING THE LONDON MARATHON THIS YEAR IN AID OF SOME OF THE CHARITIES THAT HELPED MY MUM AND OTHERS LIKE HER !!!!!!!!!!!!!!!!
If you would like to support Charles visit www.virginmoneygiving.com/charlesclifford
and read all about the Pelican on www.pelicancancer.org
THANK YOU, THANK YOU
TOBY ALEXANDER arrives 04.00 Monday 21st November 2011 8lbs 12 oz Brilliant news, so now we are 6 grandchildren,
It starts with Tim and his statin nightmare and goes on to Angela and BOWEL AND LIVER CANCER in 2010, all the more amazing since in all cases we were very fit, and well, full of life, and enjoyment. I hope that if you read our story that in some small way you can learn from our experiences and perhaps pass on information to others....
The Blog is seperated in to dates accessable below. Please Click on them to follow my progress below.
21st January 2012, many apologies but my blog has been out of action since 13th December last year 2011 due
NOVEMBER 2006 FEBRUARY 2007 April 2007 June 2007 August 2007 October 2007 December 2007 April 2008 Dec 2008 2009 2010 2011
to a virus problem, my fault as I was scammed and I am red in the face thinking about it
and will not talk about it anymore, no fool like an old fool.......anyway the computor had to be re-booted and one way and another I lost some files and some passwords including the blog information
I was writing the blog but it was not publishing
Thank goodness for clever sons and between us this afternoon I have put in the correct password information and we are up and running once again.
I will update you up to todays date and then hopefully I will start a new file dated 2012, watch this space
SO PLEASE SCROLL DOWN TO THE BOTTOM OF THIS PAGE FOR THE CURRENT SITUATION
WHICH IS ALL POSITIVE
BRILLIANT NEWS TUESDAY 13TH DECEMBER MEETING WITH ONCOLOGIST AT TRELISKE HOSPITAL FOLLOWING RECENT CT SCAN all clear, all clear no cancer, all clear, next scan in six months., what a huge relief, perhaps now the eye problems, iritis and neuralgia will go away.
NEW UPDATE SATURDAY 10TH DECEMBER 2011 SCROLL DOWN , I just wish I had some good news !
NEW UPDATE THURSDAY 3RD NOVEMBER 2011 PLEASE SCROLL DOWN
NEW UPDATE MONDAY 3RD OCTOBER 2011 SLOW BUT SLOW PROGRESS IN THE RIGHT DIRECTION , SCROLL DOWN
NEW UPDATE New Update Thursday 8th September 2011
another 6 weeks and this time I do not have any thing exciting to report. but scroll down to the end of this page
SUNDAY 24TH JULY 6 WEEKS HAS GONE BY AND BRILLIANT NEWS.
SEE MUCH FURTHER BELOW BUT WE START THIS BIT OF THE STORY BELOW.........2010 information under 2010 see above, ........
So here we are Wednesday 19TH January 2011, sorry about the confusion over starting this blog but I am not an expert at blogs and when trying to write this, I was writing in the wrong place, I need intelligent and understanding and thank goodness no 2 son Charles to guide me on the correct road
WEDNESDAY 19TH jANUARY 2011
Angela's birthday, not much fun, shingles in full flow, itching and very painfull, our District nurse team are amazing, in today for another blood test, and to give us some medical aids to make Angela more comfortable, special air cushions , six weeks from operation.
yesterday with very kind taxi help from Richard and Barbara we had an appoinment with oncologist at treliske. his words you can do without the shingles, check up, advice on future, present drugs etc and get better and fit and see me in June !
THURSDAY 20th our lovely Doctor visited at home, so very kind, checking on all the various medication, on the patient, the operation etc and ordering more... perhaps this is the moment to write down all the medecin
1) Aciclovir 200 mg five times a day for the first week after shingles diagnosed.
2) Cardicor 2.5 mg a beta blocker one each morning 07.00
3) Enoxaparin 40 mg subcutaneous daily at 18.00, an injection administered by myself to my surprise !
4) Ferrous Fumarate ( fersamal ) 210 mg iron tablet 07.00 13.00 18.00
5) Omeprazole 20 mg capsules anti acid 07.00
6) Paracetomol 500 mg caplets 2 at 07.00 12.00 18.00 22.00
7) Spironolactone 25 mg tablets 2 at 07.00
8) Nystan mouth wash needed for the first 4 weeks
9) Ondansetron 4 mg tablets anti nausea every 8 hours 06.00 14.00 22.00 , luckily we did not
as I understand it, we are to use all of these until end of February and then we may just need the Cardicor and the ferrous iron tablets, but this is all being carefully monitored by weekly wednesday blood tests.
THURSDAY 27TH january , FOUR WEEKS OF SHINGLES, 7 1/2 WEEKS FROM LIVER OPERATION AND 21 WEEKS FROM bOWEL OPERATION we visit Treliske hospital again, thank you John and Roe for taxi service. to visit our Bowel surgeon. Angela is a star, so very brave and brilliant and her future is now in the hands of two GODS....... no i was the Liver surgeons and no 2 is up there, all around and it is now in their hands ! ( these a not my words ) he will see her again in June
how lucky we are to have had such an amazing, brilliant team looking after Angela. thank you all so very much.
NOW it is Tuesday 8th February 5 weeks 4 days of shingles, 4 weeks home from hospital, 9 weeks from Liver op and the shingles are as painful as ever, scams gone but itching and shooting pain from nerve ends ,,, it is not pretty to see Angela in pain, am not able to give her any more pain relief but will talk to Doctor tomorrow about it.................. have a super chicken soup on the boil.....smells good!
FRIDAY 18th February 2011 , THIS IS ABOUT TEN WEEKS FROM THE LIVER OPERATION.shingles still with us but in other directions a very slow improvement, last week end two walks out in the sunshine,
two days ago , our first visit to Tesco shopping, it is all very simple stuff but good to be able to report this as getting better is not always a straight line effort and since Angela's immune system is nearly zero ( in my eyes ) then the shingles is going to take a very very long time.. this afternoon a little cooking on her own,,,,,,,,,,, wonderful but then
a few hours later, she is in her chair, groaning with the pain beyind the left eye................. have asked about more pain relief all codeine based and Angela not at all keen as the last time she had codeine, she was very aware of the habit forming capabilities of this drug............... so it is a no at the moment and we will sodier on................. half term and family down to see us,, will be good.
I forgot to report on my ANNUAL HEALTH CHECK UP FOR HYPERTENSION only two months late but I am very pleased with myself , blood pressure down, all my functions... liver, blood, sugar levels etc all working as they should do, which is brilliant............... as you may have realised , following my statin experience, I am not keen on drugs and have worked hard to get myself as fit as possible with a view to this lowering my blood pressure, Voila, I have done well and as soon as Angela is a bit better, Dr happy to allow a reduction in my pills.... I am happy about this
but am still working on my feet as they are still very numb with a very strong sock syndrome common with periferal neuropathy and I since last Easter I have Tinnitus in both ears, a rushing water sound. I hesitate to tell you but look up tinnitus and causes and up pops the dreaded statins........... do look at www.spacedoc.net a brilliant website and remember that all you Ladies should NOT be taking statins as they are NO help to you at all but like all drugs can give you SIDE EFFECTS. (I am on my high horse again. )
EASTER MONDAY 25TH APRIL 2011 , IT IS NOW 20 WEEKS FROM THE LIVER OPERATION AND 33 WEEKS FROM THE bOWEL OPERATION
the recovery progress has been painfully slow, over the last ten weeks, so slow in fact that I have not written
anything at all in the blog as there has been nothing to report apart from continuing shingles, perpetual headache, and occasional shooting pains at the back of the eyes. no fun at all, and Angela also has no strength at all, no feeling of get up and go and her phrase over these last two and a half months has been " I AM TIRED OF BEING TIRED ! " I am also mindfull that it can be very boring and repetitive just writing the same stuff over and over again !
So precise and to the point I am at the key board again and happy to report some progress at last ! , the head aches are easing and a little more strength is returning, All good news but the phrase now is " I ache all over ! "
the volume of pills and potions much less but I still have to give the 6.o pm daily injection and in the morning is the little pill being a Beta Blocker and of course when needed the pain killer being paracetomol !
so a little good news, Easter is with us, we have 11 of us at home, wonderfull sunny weather, all helping me with the cooking, and we have brilliant news in that we are expecting our 6th grand child in November !
WEEKLY blood tests show that all is reasonably well, liver working well and we are now on a monthly routine , so this is all positive. Tuesday 24th May Angela has a CT scan at Treliske and then two weeks later, we see the oncologist with the half year results, this will naturally be a testing time and we can only hope for a positive result but whatever the result is, we will meet it with positivity and a real determination to succeed
SATURDAY 7 th MAY 2011 18 WEEKS OF SHINGLES, Angela is getting stronger in herself but shingles, headaches etc and no strength still with her plus two more spots on forehead have arrived but do not seem to be getting worse.there is not much fun in life at the moment, we were able to go out to lunch yesterday at Cornwall College in Camborne which has a catering school and the students cook and serve in the restaurant. Very good lunch and it reminded me that 52 years ago I started my hotel training with a two year course at Westminster hotel school , Vincent square, Victoria London and there was a similar training restaurant. I still have my set of chefs cooking knives ! a simple lunch and Angela was finished for the rest of the day, it is so frustrating.
WEDNESDAY 25TH MAY 2011 nearly three weeks goes by, and sorry not to be more positive and give you more news but there is good news in that Angela is improving but at a snails pace.... headaches diminishing but still in evidence and a new problem with pain in both shoulders as she moves.... we suppose it is something to do with the body healing after the major incisions made during the liver operation. Yesterday a little stress as it was back to treliske Hospital for a scan ... the first 6 month scan which will tell us what is happening, results in a fortnight... I am trying to tell myself that whatever the results are it is good news ie if positive it is brilliant and if bad news, then at least further treatment can start as soon as possible,
it is now 20 weeks of shingles and this morning a new spot arrived on her forehead, her immune system must still be very low ps sunday roasts a speciality !
THURSDAY 9TH JUNE SCAN RESULT AND GOOD NEWS
two days ago on Tuesday 7th june we had a meeting with our brilliant Oncologist The stress and pressure in all the waiting is enormous, it is all very well being positive etc but one just is not human if you think the worst and this has certainly been a very hard two weeks waiting for the results, emotions up and down all the time. !
This is our first experience of waiting for 6 month cancer scan results and Angela is all clear for the moment !. it is almost an anti climax ! but just brilliant and a huge, huge relief., Angela still has some shingles but not nearly as bad as it was and she has plenty of back, arm and shoulder pain as the bits of her body slowly knit back together after the huge cuts and scars following the liver operation. so not quite ready for golf or pilates yet.
we now have a five year battle to win, as I understand from the Basingstoke cancer liver team that after five years they consider you to be cured............ of course the cancer may return in the mean time and more treatment or chemotherapy or another operation may be needed.......... so there is a long road to follow but at least we are in the right direction and are determined to get back to normal and enjoy life to the full.
........................ we have to be checked out by the bowel Surgeon sometime soon and then return in December. for another scan Tuesday 13th December
....................... medication is now down to just one small pill a day............ no more injections thank goodness.
many , many thanks to you all who have been in touch or just read this blog, you have been a huge boost
to morale... thanks again.
I hope not to have to write so much of these inadequate words but please continue to phone or email
SUNDAY 24TH JULY 2011 we have good news and bad news, being a cancer patient in recovery is never going to be an easy ride and this is certainly true in our case.
Good news was that as soon as ther Oncologist gave the all clear we decided to go on holiday, so it was off to France for 8 nights, nothing very spectacular, three nights in the Grand Hotel des Dunes in Lesconil just south of Quimper, one night at Port Louis and then three more at the Hotel de la Plage at St Pierre Quiberon, lovely sunny weather and we just relaxed on the beach woth a little walking and then back to Roscoff via Houlgout
this was a great break, a good tonic and we both felt really good and relaxed... it has been a very traumatic 15 months ! but there is always a sting in the tail...................we arrived back on Friday pm 1st july
BAD NEWS monday 4th July we woke up about 06.00 to find that Angela had blurred vision in both eyes ! thanks to our lovely helpful Doctor and with help and a visit to eye hospital, diagnosis is IRITIS, inflamattion and problems in the IRIS of the eyes and like all eye problems has tobe carefully treated with hourly drops, three hour drops and another set of drops and ointment for bed time. just as you think you are improving ! it is of course all linked to the Shingles and the IMMUNE SYSTEM being rock bottom. Angela had started to drive and have some independance, so all that is out of the window ! NOW NO DRIVING FOR THE MOMENT.
Good news is that we are now down to drops twice a day, eye has been checked again in Hospital and is Ok, so Angela is improving once more.
MY CHALLENGE TO YOU IS ? IF YOU HAVE A SURE FIRE WAY OF IMPROVING THE IMMUNE SYSTEM, YOU WILL MAKE A FORTUNE. eVERY MEDIC WE ASK THIS QUESTION SAYS " if only" with a shrug of the shoulders School summer holidays, the next 6 weeks our challenge is to take Angela out walking daily , and try to boost her and give her back some vitality and strength , she is just so very tired and worn out, we do things in short bursts, but she is looking good ! Angela is so tough and we are all so very proud of her, we also realise just how lucky we are to have survived thanks to the amazing skill of the surgeons, support staff in Hospital and now the team here in our local community. Thank you all !
THURSDAY 8TH SEPTEMBER 2011................................... NOT MUCH TO REPORT BUT SOMETIMES THERE IS THE HINT OF A LITTLE MORE STRENGTH COMING BACK BUT THIS IS MATCHED BY
1) EYE PROBLEMS.... Angela still not able to drive or even read as much as she used to... she has been to have an eye test which shows eye sight has completely changed, so new glasses which at the moment are no help but we can change them within three months, so it seems sensible to wait and see what happens
2) Neuropathy of the feet, if anything this is worse, no fun as I know myself
3) Shiinges , neuralgia pain still at the back of her left eye, it is there all the time , it is 8 1/2 months since it started. I suppose it will go when it is ready?
4) just no strength, we are trying to go on a regular basis but realise that sleep and rest are also very important to let the body heal, so this seems to be in the majority at the moment
...................... so from this you will gather , it is still one day at a time, Angela is doing a little of the cooking so that is good.. We just have to stay positive, Angela has moments of depression and the thought of what might be in the future... no fun I was reading Angela's case notes and letters from Basingstoke and realise how bad she was, how over the excepted limits she was and how very lucky we are and how much we owe to Mr Rees and his team at basingstoke.. thank you.
STATINS AN UPDATE ON MY OWN CONDITION, IF YOU ARE NEW TO MY BLOG, PLEASE GO BACK TO THE FRONT HOME PAGE OF 5 YEARS AGO, IT IS ALL VERY BORING BUT VERY FRIGHTENING, I was only on them for a few weeks and look at the damage to myself.
I am reminded of this by a very good article in the Daily telegraph by Christina Odone Friday 6th May 2011 under the title of " Daily statins for all takes some swollowing "
my feet are still numb from toes to my calves but thanks to getting fit and strong I am able to walk, golf, yoga, pilates and life a normal life. I am not happy about the TINNITUS in both ears but have now learnt to ignore it. ! but I am not in a wheelchair, my 70th birthday , well gone past and I continue to be positive and determined that my feet will improve. of course I am kept busy with the household chores but now do not panic over the roasts and the gravy ! and I am now an expert in the super market. !
MONDAY 3RD OCTOBER we are just back from a second holiday, again something very simple, no flying, so rented a very nice house on the Ile de Re , just off the coast of La Rochelle, for two weeks with a total of just under three weeks away, good weather , very peaceful, good food and relaxation
I drove over a 1000 miles , the first time I have driven long distances and abroad since my first stroke in 1996, so I am pleased with myself
Angela has come back with more vigour, looking very good and has gently started to drive again, this is brilliant as she then has mobility ! Today she started a simple on the chair Pilates class.... so good as a sense of normality returns
downside is that she still has neuralgia at the back of her eyes, little head aches... and neuropathy in the feet from the chemotherapy.
we are meeting the Bowel surgeon next week for a check up and the main MRI scan is early December but at the moment it is a gentle upward path.
it is not easy to be too enthusiasic knowing the 50 % chance she has for survival over the first 5 years, but we do not talk about this, and concentrate on a day at a time and then a week and so on, this way, life is lived to the full as far as possible
ps I have become a skype and lap top man plus wifi, so was able to continue with my work on holiday....brilliant, what a tecki and then I ruined it all by falling for the microsoft scan when you get a phone call from an alleged Microsoft technician who has noticed that your computor has a nasty virus.... need I say more, be very aware, I am wiser now but my computor has to be re-- booted to make sure
thank you Michael for your brilliant help more as the weeks go by !
THURSDAY 3RD NOVEMBER 2011 MORE STATISTICS BUT TOMORROW IT IS 44 WEEKS SINCE THE SHINGLES STARTED, 58 WEEKS SINCE THE LIVER BOWEL OPERATION AND 47 1/2 WEEKS SINCE THE LIVER OPERATION. the worst part as of today, is that the shingles / neuralgia has over the last few days become much worse, it is so frustrating and horrible for Angela, ( she is a real tough lady deally with the pain )
Wednesday 19th oct check up with Bowel surgeon, he is amazed how well Angela looks and again emphasises that it is very important that we enjoy and live our lives to the full. ! not sure which way to take this.. is it a good or bad sign ... also he would be happier if Angela's next scan on Monday
28th November was a P.E.T. scan instead of the CT Thorax pelvis with contrast scan.. we are not in a position to argue over this one and feel we must go with the Oncologist especially since his results were so very good last year.
So life goes on... more in due course... we are still waiting to hear from the eye hospital re further tests re glaucoma. I still find it dreadful that the shingles still persists but on the good side it does go up and down a bit in intensity... in this game ,, it is important always to try and find bits of good news
SATURDAY 10TH DECEMBER 2011 I wish I had some good news, the last few weeks have not
been brilliant, Angela has had really rotten cold with a chesty cough, continuing shingles pain
good news last week was that cold and cough gone and neuralgia at back of left eye felt as if it
has reduced, so after the scan we were feeling more confident. ( I have to say that until we were
cancer sufferers, we had no idea of the stress involved, the ups and downs etc, so I now have a huge respect for anyone suffering from or who has beated cancer, You are stars and well done !
back to a few days ago, left eye full of pain and red blotches, , appointment arranged for eye clinic at treliske hospital which was yesterday and Angela again has IRITIS plus a further eye problems.
AN ULCER.in left eye . much pain and lots more drops etc which will go one for the next 5 weeks, no more driving again, this is all due to immune system being rock bottom, 6th of july was the first
attack of IRITIS
good news is that after one day and hourly drops in the eye, the pain is much reduced.
we now wait for Tuesday 13th and our appointment with the Oncologist for the results of the
ANNUAL CHECK UP..... it was all clear in June after the 6 months and we just have to be positive
inspite of all the current problems. TUESDAY 13TH DECEMBER 2011 AND THE SECOND SIX MONTH ALL
CLEAR,,,, WHAT A RELIEF AND WE CAN NOW PLAN FOR THE NEXT 6 MONTHS AND HOPEFULLY BRING ANGELA BACK TO FULL FITNESS AND STRENGTH........ we have been so incredibly lucky, little miracles do happen and we are so very grateful to so many friends who have prayed for us and thought of us. All we can say is THANK YOU
I have to tell myself that we are very lucky, last year we were in a very dark place with limited life expectancy
and By now Angela would be in a very sorry state or not with us but thanks to three brilliant Doctors and their support teams at the moment as far as we know, she has no cancer and this is what we say to ourselves... but the doubts are not far away,,,,, it is not easy,
so 13th december to 21st January 2012, what has been happening,
Christmas and New year was very low key, with our family and grandchildren in Poole and Teddington and the joy of meeting young Toby, what a pleasure and delight it is to being grand parents and we are lucky forward to many more years and watching them develop and grow.
Angela still has minor shingles/ neuralgia at the back of the left eye and we have decided to take the bull by the horns and seek private specialist advice for Angela's eyes. she has been waiting for two eye tests since August
these have now been carried out in the Duchy private hospital in Truro. it has amazed us both how busy the Duchy is... teeming with people seeking private medical help.
the result of the tests are that Angela needs a cataract operation on her right eye, she has very little vision from it at the moment and we are just waiting for a date within the next few weeks. and then the left eye may need the same.
............... it is interesting to learn the the very strong treatment known as Predforte for the IRITIS has a side effect which makes any cataract problems much worse......................it is a grand life.....the very strong
chemotherapy has enabled the liver and bowels operations to be carried out and saved Angelas life but the side effect have been the shingles followed by iritis and now the cataract problems as well as the extreme loss of
body strength. this latter is slowly improving, Angela is doing very simple weekly chair pilates and we are planning to get her back to the golf course sometime in 2012
all I can say is that this last year 2011 has been a hard slog for both of us but our overall feeling is that
we are very, very lucky and we are looking forward to better things in 2012.
I am closing this year now, so for the current news from 21st Jan 2012 onwards, please go back to the start and find 2012 and many thanks for all your support.
, we will keep fighting and be positive, tomorrow is always another day.
as for myself feet still slowly improving, but Tinitus is worse, I think it is the stress!
many thanks for continuing support in so many ways
tim ( determined tim )
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