Welcome To Tims 2010 Blog LOOKING BACK AS WELL AS FORWARD
WEDNESDAY 1ST DECEMBER 2010, COMING UP TO CRUNCH TIME AND I AM VERY NERVOUs , in order for this to make sense , nervous for the forthcoming major liver resection operation Angela is to have in a few days. AT BASINGSTOKE HOSPITAL FOR THE VERY LATEST NEWS, PLEASE KEEP SCROLLING DOWN TO THE END more news on 31st December of this very difficult year. IF YOU ARE A BIT SQUEEMISH , THIS IS NOT THE BLOG FOR YOU BUT IF YOU HAVE CANCER AND OR HAVE IT IN THE FAMILY, i HOPE IT MAY HELP, BUT IT IS VERY LONG AND NO FUN AT ALL.... i HOPE THAT A SENSE OF SURVIVAL, FUN, HOPE AND JOY AND SOME LAUGHTER COME THROUGH THE WORDS AS i WRITE THIS. IN SPITE OF THE MUCH HEART ACHE AND TEARS AND IT IS NOT AT ALL GRAMATICALLY CORRECT AS IT IS WRITTEN STRAIGHT FROM THE HEART
MANY THANKS FOR ALL YOUR SUPPORT TO BOTH OF US.THIS IS AN ON GOING BLOG FROM FEBRUARY 2010 ONWARDS
JUST AS WE THOUGHT THAT I COULD WIND DOWN THE BLOG AS I WAS SO MUCH BETTER from my four year fight against STATN PROBLEMS ( see all the previous on my blog ) WE NOW HAVE THE TALE OF OUR FIGHT AGAINST CANCER BOWEL CANCER .STARTING WED 7TH APRIL
( PLEASE SCROLL DOWN FOR ANGELA'S FIGHT AGAINST CANCER,) if you are over 65 years old and wish for a BOWEL CANCER SCREENING TEST telephone 0800 707 6060, it might save your life !
( these next few sentences added 6th November 2010.as the true severity of our cancer battle is now revealed,,.......... Angela's condition is very complicated, she has bowel cancer with secondaries in the liver plus diverticulitis and P.E. Pulmonary embolism ( D.V.T. clots in her lungs ) as a quick summary after all the initial investigations, no operations possible just chemotherapy. Luckily this was very successful and now Angela has had a bowel operation and now waiting for major liver operations> all treatments in treliske Hospital Truro and now basingstoke and all staff just brilliant, we are not able to thank you all enough ! for the up to date news scroll down to the end or read on. It is so strange, my lovely darling Angela looks so well, is gaining strength every day and and the same time is desperately ill, this cancer business is a tricky one and we are both determined to beat it and live and enjoy our lives together for many more years
BRILLIANT NEWS FOR THE WAY AHEAD 26TH AUGUST 2010 SCROLL DOWN. operations now possible thanks to brilliant results from chemotherapy. if you are new to our story, I have been recovering from CIDP on my feet for the last four years and Angela now has bowel cancer, we are both very very positive !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! this happens when you are just about 70 years old. if you have bad luck !
I just hope that my story will help others. The amazing thing is that I think I am still slowly and very so slowly is the word for getting better BUT the problem is 1) is it the neuropathy in the feet and legs i.e the numbness improving OR
2) is it just the fact that every day I continue to do my boring routine of general foot and leg and balance exercises which
must mean that I am generally stronger. for example today I was up a ladder changing two light bulbs in our outside
lights.... there is no way I would have thought of doing this one month ago let alone anytime during the last 3 years and 9 months, so it certainly is good news for me, probably very boring for you but the ANSWER IS THAT IF YOU HAVE A PROBLEM YOU MUST BE POSITIVE............. i talk often to myself about Positive Recovery and just how important it is,
April 13th 2010 Good news and bad news
!) good news is that I continue to improve, my legs and feet are not only stronger, I am walking better, my golf is improving, and the neuropathy i or numbness is slowly, ever so slowly going away............... it is a very strange feeling as my legs and feet change by the hour or by the minute, sometimes
slight tingling, sometimes twitching, strange movements etc , then very numb then much looser, but generally all going in the right direction,,, positive recovery,,,,,, it is now 3 years and 11 months since I took the statin
OUR CANCER FIGHT BACK THIS IS GOING TO BE A LONG AND SOMETIMES A VERY SAD STORY AND OTHER TIMES A TALE OF EXTREME JOY. IN ALL CASES CANCER IS NOT EASY
I am writing this bit Friday 25th june2010. Angela and myself purchased Smugglers Ride in 1987 as a guest house and converted it into holiday flats as harbour Lights and Smugglers Ride. Over the years we have been very privileged to have many of our guests return year after year and we thank you very much . At this time of year onwards through the summer, you will be contacting me to re-book for next year and it gives me no pleasure to invite you to read these words as I would much rather have Angela fit and well. Please think and if possible pray for us both as we may be in the miracle scenario!
2 ) bad news is that I have another battle to overcome, Angela has been diagnosed with COLON CANCER
this was following a routine bowel screening on Wednesday 7th April .. too early to know the damage but a scan today and we have a meeting with the cancer nurse on Thursday 15th april at 16.00 . I did tell the nurse that we were a couple of T.O.B.'s
what is that ? tough old birds and she laughed......... I think this was a new phrase for her...........
3) we are coming to terms with all of this, and will write later but in the meantime chemotherapy starts this friday may 6th
many thanks for all the many cards, letters and flowers , thank you ( no operation possible as cancer too bad and has spread to liver , thus chemo to start ! amazing Angela has no symptons, no warning at all !
WEDNESDAY 19TH MAY six weeks later and we are still in a mixture of shock, amazement, is this really true ? and sheer terror and anquish
treatment at Treliske hospital hear in Truro very good indeed, the shock of it all is too great and painful for me to recount at the moment but
following a CAT scan and MRI the oncologist sent the scans up to the liver dept in Plymouth , they became interested, talk of operations etc and suggested a PET scan in Plymouth. we are not experts but PET scan involves some form of radio active liquid injected into you and then any bad bits of cancer show up on the screen in a very big way. Plymouth is the nearest centre of excellence from our home and this is normal NHS proceedure. ( but please remember that the very, very best surgeons may be in another hospital )
As soon as Plymouth saw the results of the PET scan, unfortunately they said that NO OPERATIONS were possible and that the only option is chemotherapy as a start. CONCLUSION THAT THE RESULTS ARE VERY BAD AND OUTLOOK BAD .... just imagine if this was you in this situation.
Iwe both decided to fight and the only way is to get more information and perhaps another medical opinion. REMEMBER JUST BECAUSE YOU HAVE BEEN TOLD NO , YOU HAVE A PERFECT RIGHT UNDER THE NHS TO ASK FOR ANOTHER OPINION, BUT YOU HAVE T0 INITIATE THIS YOURSELF
THIS IS SO IMPORTANT AND COULD SAVE YOUR LIFE
we are two weeks into the first period of three weeks.......... starts with a two hour infusion of one drug OXALIPLATIN, followed by 14 days of pink pills CAPECITABINE also known as XELODA being three at
500 mg plus two at 150 mg twice a day and then a week off
so far so good, Angela is very , very tired but No nasty side effects of sickness etc etc, there is a list as long as your arm
but why Angela........... she has been fit all her life and still today has NO symptons at all .. it is bizarre and very unfair and we do not wish to lose each other! I must stop as I am crying now.............
any ideas or help, please do not hesitate to be in touch, how so very quickly life can change
we are looking for a second opinion and have been greatly helped by LYNN'S BOWEL CANCER CAMPAIGN
MONDAY 14TH JUNE, I spoke or in this case wrote the above in a wonderful situation of being ignorant of the effects of side effects
just has probably the worst 10 days of our lives, Being of a certain age I seem to remember a song and I remember the lines something about " THIS IS NO WAY TO TREAT A LADY " and seing my darling Angela in distress I agree,
just look up the side effects on Google of the drugs I have mentioned above and you will see fatigue, diarrhoea, feeling or being sick, severe tiredness, tingling in the hands and fingers ( neuropathy I know all about this as my feet are still semi numb and tingling ) at least the good news is there is no hair loss at the moment.
So we both thought how well we were doing, the first session of three weeks were relatively OK just very tired.
The second session started on with the second infusion on Friday 28th may, it takes two hours of a trip and about three hours plus in total and it all seemed to go better than the time before, less tingling weekend fine and onto the second period of pills, no problems except tiredness until Thursday 3rd june
WHAM all the drugs must have hit a tender spot. turn away if you are of a tender nature as diarrhoea of the maximum order started, gently for a few days , by saturday 5th the days were spent on her bed and in the bathroom at regular intervals, nothing would stay down more than 30 minutes, we have anti diarrhoea pills up to 8 a day one or two at a time after each episode.
Tuesday 8th was the worst day, Angela not even able to dress and get up ! need I say any more... no way to treat a lady !
and so onwards through the rest of the week with the second session of pills stopping last Friday 11th June We had hoped that the problem might ease as so it is now a little as I write this on Monday pm 14th June... we were in the hospital this morning for a blood test and it seems that I have not been giving enough ant D pills I should have been giving the maximum of 8 each day................ this is totally against anything we have been used to Angela has never had a pill or very few in here life and with my statin episode we are not keen on pills !
So I am now in double dose mode trying to bung her up !
Saturday 12th June was our 45 th Wedding Anniversary, party planned, all the family down for the weekend etc... all cancelled
However we are very determined and just say to each other that we will go with the flow ! and take it all in our stride hoping and believing that all the treatment is for the best and will have a positive outcome.
-----------------------------------------------------Thank you all out there so very much for all your cards and kind words and offers of help, sorry if we are not able to respond but other things to do ! but it is all very much appreciated., so thank you again
------------------------------------------------------GOOD NEWS of a sort, up until today we had thought that there was NO chance of any operation
of any sort but we have a glimmer of hope it is interesting how the NHS works, if you ask for a second opinion, your local specialist in your own hospital can only refer you for a second opinion to your nearest centre of excelle nce,, in our case PLYMOUTH this we had carried out and the answer was NO
HOWEVER ther is nothing to stop you asking for another opinion the third and this is what we have done. I asked Siobhan the manager at the Bowel Cancer charity to suggest the very best unit in the country and Basingstoke was the answer. Many thanks for all your hard work on our behalf Siobhan !
Basingstoke have not ruled out a Liver operation, it all depends on the results of the chemotherapy, so a glimmer of hope here, in fact a huge ray of hope it turns out that Mr Rees the chief surgeon at Basingstoke was the pioneer with a German Doctor some 20 years ago, and these very clever men worked out the way for livers to be cut up without huge amounts of bleeding and thusmaking liver operations possible Basingstoke is the most experience team with over 2000 operations , look up THE PELICAN CENTRE AT BASINGSTOKE HOSPITAL
but tempered by reality and back to one day at a time
SO THE IMMEDIATE FUTURE, the third infusion is due to start this coming Friday 18th june but this may be put off for a week to sort out the D word
in the meantime I am dishing out the pills for the D in double quantites,,,,,,,,,,,, watch this space and remember that the extreme tiredness, nausea etc still exists
BAD NEWS in the middle of all this Victor husband of Angela's sister has not been too well for a few months and finally diagnosed with a cancerous brain tumour non operable ! we wonder sometimes what we have done wrong to deserve all of this, incredible that there are two of my dearest and nearest having chemotherapy now .............I am speechless and it is only through writing some of this stuff down that I am able to remain sane and cope especially now that I am chief cook and bottle washer, dispenser of pills and most other things......
Good news is that I am determined to and continue with all my exercises on a daily basis ( again this keeps me sane ) and my feet are again slowly and so very slowly continuing to improve... it is now four years and one month since I took the first statin !
I started this blog 4 years ago with a view of using it occasionally to offer information about our flats on Scilly with special offers , I am reminded of the rubbish I used to put on my chalk boards outdie the Kavorna from 1972 onwards when I was writing on the board about the weather and hot cross buns............. how technology has moved forward.
so four years of helping myself to recover from statin poisoning......... I was lucky I was never sick or problems with the D word
AND NOW I AM HELPING ANGELA TO RECOVER FROM SOMETHING MUCH WORSE,
THURSDAY 17TH JUNE 2010
what a difference a few days make and a large quantity of Ommodium make. much larger dose than we would have thought but this is a learning exercise ! Angela happy and back to normal,re diarrhoe department , not much else is normal weather sunny , so we will enjoy today and then tomorrow Friday 18th June our THIRD THREE WEEK PERIOD OF CHEMOTHERAPY STARTS AGAIN
FRIDAY 25TH JUNE
A WEEK INTO THE THIRD SESSION OF CHEMO, DRUG DOSAGE REDUCED, ONLY 21 THOUSAND mg A WEEK AND IT HAS MADE A HUGE DIFFERENCE no sickness etc etc so life is almost livable but just extreme tiredness means that Angela is in a haze of drugs all day, she is sleeping many many hours and half comes to life for a few hours a day... eyes very painful plus hands and feet need a lot of cream BUT we are getting through it all on a daily basis, I am thinking to myself that this is good as it allows the drugs to do the proper job of working on the cancers and not being distracted in other ways.
we continue to thank so many for their kind words of encouragement, please forgive if in many cases we do not immediately say thanks, Angela finds speaking on the telephone very difficult I am happy with emails etc and you will be pleased to know that my shopping and cooking skills are improving on a daily basis.
This is very stressful for the non patient is me and I make no apologies for what I write, I never edit, and this is my moment when I can release so much of the pain and anquish inside me and frustration. not so much crying this week as Angela is not obviously in pain and distress, this is my biggest worry for the future good news, on my monthly visit to my reflexologist yesterday, it was very obvious that there is a slow but sure improvement in my feet. great news as I spend about 16 hours a week on home exercises, boring but paying dividends.
SUNDAY PM 27 th June a much better day , weather is amazing, our football team rubbish but Angela has had a much better day but remember this is all relative, she was able to get up dress and have breakfast and then only an hour asleep on her bed and then a bit of pottering around, Sunday papers etc. I did a roast chicken for lunch and am not very good yet with the gravy, so Angela was able to help with this. Bit of a rest after lunch on the sofa, a potter around the garden and a bit of snipping for about 20 min s, then exhaustion and a rest, but no long sleep as usual and at 20.30 she is still awake and reading the papers. this is a good day but a very very long way away from an active life as it was 12 weeks ago.
Lets hope we can go back to a normal life a.s.a.p and that all these drugs are helping. I have to be realistic and accept that our lives will never be quite the same again........................................lets hope for a better day tomorrow.... keep smiling.( it is hard as I write this with a bit of a tear in my eyes, hard not to have emotion. it is not easy!!!!!!!!!
THURSDAY JULY 1ST 2010 17.15
THANK GOODNESS TOMORROW IS THE LAST DAY OF OUR THIRD SESSION as Angela is now in a haze of drugs, light headed with no strength at all to do anything except doze and sleep today, just hope that all the drugs are doing a good job !
good news is that two weeks ago, I took the Bowel Cancer screening poo test and have been seriously worried that I too might be in trouble but happy to say that I AM CLEAR and normal. What a relief but even more hard for Angela to take her current situation on board. It is a really terrible situation to be in and nothing in life can quite prepare you for this type of living nightmare !!!!!!!!!!
SO THIS IS IMPORTANT
IF YOU ARE 65 YEARS OLD PLUS AND WHICH TO HAVE A SCREENING TEST FOR BOWEL CANCER TELEPHONE
0800 707 60 60
AND please do it now, it is so important
FRIDAY 2ND TO FRIDAY 9TH JULY
THIS IS THE LAST WEEK OF THE 3RD SESSION OF CHEMO and a week of drugs, when we started this treatment we both in our ignorance that this would be a good week and we would go back to almost normal life. How idiotic to think this, the end of the first session it was almost like that, end of the really bad 2nd session Angela had one half decent day the Thursday, This time since the dosage was reduced life was a bit better on Tuesday,, more on Wed, out for coffee with friends both days but exhaustion afterwards ! and then l yesterday not a bad day. Angela made our bed , first time for ages, 20 mins of gardening, in the afternoon to the hairdresser and a little shopping
FRIDAY 9th 0920 the 4th infusion and as we entered the hospital for the first time a little weep from Angela as she knew that in two hours time she would be in a bad way, hand, arm and shoulder on her right side very painfull, very drowsy, ankles swollen, rest of day dozing and sleeping until pm Charles son and family arrived ready for their holiday to Scilly tomorrow.
SAT 10th, a better day than last time, all symptons are bit less, arm etc easier, all still swollen and tingling, flushed cheeks, eyes watering but not so much tiredness and extreme exhaustion. I am writing this at 9.00 pm and wonder whether this is a good sign, are the drugs on top of the cancer now ? how do I know how it all works but I have to hope and continue to be positive. Angela still awake !
SUNDAY 11th another 3 lots of 500 mg am and the same again in the early evening plus 3 sterroid pills am, noon and pm but a better day, Angela more in charge and no sleeping. So am on the sun lounger in the sun in the back garden, resting peacefully, no sleep and using visualisation technique of walking around the coastal footpaths on St mary's Isles of Scilly. Brilliant a good sign that she is really fighting.
I did scrambled eggs for lunch and then Anjo spent the rest of the day on the sofa again peacefully dozing watching the cycling Tour de France, golf and then the World cup football. At the end of the evening, she told me that she felt the most zonct out by the drugs yet but pleased not to be asleep. My roast chicken superb ! a better day tomorrow the same regime of drugs.
Monday to Saturday 17th July and the end of our 10th week of chemotherapy, a better week in that we are now in a pattern, I am better at the household cooking etc side of things and Angela is so resilient, strong in her self but completely knocked out by the cancer drugs, Each day is very much the same, sleeping or dozing, extreme tiredness and no strength at all, As a result not much possible is able to be down. This is not normall life at all ! but at least this week Angela has been out to coffee or friends in for coffee each day for about an hour. This is all she can manage and then about two or three hours of sleep to recover. Good news is that this week she has felt strong enough to talk to friends on the phone the first time , so many thanks,and go shopping to Sainsbury, i should explain that over the last 45 years, I did not shop at all, twice a year for gifts but otherwise not at all. plenty of other work to do !
bad news , bless her, as we walked round the shop I was told where the socks, , pants etc are, so that I can easily buy them in the future. ! that brought a tear to both our eyes ! today saturday, I has putting up on the wall some pictures of our lovely grandchildren, words to the effect that she will never see them growing up. However hard we try to be positive, there are always down moments like this ! it is very, very hard. How do we know that all this heart ache is giving forward any results ? By now normally we would have enjoyed two holidays with another planned in Sept., not this year. Is it all a waste of time? somber thoughts, in private and never spoken. I wonder what Angela thinks some times about it all ? . Since we have been married for 45 years, I expect it is the same as myself. thought inside but not spoken outloud. I wonder what we have done to deserve all of this ?
Good news Charles and his family back from Scilly, brilliant week, and bless them we have another super painting of Scilly on our Kitchen wall, thanks so very much., children and lovely wives and grandchildren are such a very special gift and we are so lucky !
SUNDAY 18th July it is Roast Lamb tomorrow, watch this space, last week I over par boiled the potatoes.
MONDAY 26th July I was given ten out of ten for the lamb and 9 out of 10 for the roast chicken yesterday 25th july. this last session of chemotherapy happy to say has gone much better, the best so far , ( still plenty of side effects and extreme tiredness and eye problems ) but eating well.
CAT scan last week and we are getting the results this Friday 30th July.
Blood test today and chat with Dr Ellis oncologist and he has cancelled the next session of chemo which was due to start on this Friday 30th
He did say that preliminary results show that Angela has reacted well to the chemo and subject to lots of things she MAY ????? be able now to have a bowel cancer operation. ( is this a small chink of good news ) we will know more on Friday p.m.
I have to say that I went into the interview room with a heavy dread in my heart and am writing this a few hours later in a much better state of mind. I felt really very tired, it is hard physically and emotionally to deal with all of this and the last three months have been horrendous for most of the time, trying to pretend that every thing is OK when at the back of your mind there is the cancer thing and all that it can mean.
keep smiling, I am much more heartened but of course a very long way to go,
SATURDAY 7TH AUGUST
Thought for the day......... Where there is life , there is hope ( Oncology dept Treliske hospital )
Where there is love, there is life ( Mahatma Gandhi )
Plenty of love and plenty of life and plenty of hope at the moment...............so what news? The CAT scan showed a very good response to the two tumours in the bowel and a significant reduction in the liver as a result of the Chemotherapy
RESULT Angela now has a surgeon allocated to her and he would like to see the results of another MRI which is at 13.40 this Wednesday 11th August this is an MRI on the Liver and Spleen and also Liver with Contrast. The results of this will also go to Basingstoke to keep them in the picture.
So the results of this may be available this Friday 13th August at the TEAM meeting and we will then have the phone call in the afternoon, this is stressful as in our condition, we ONLY want good news and a positive way forward with a Bowel operation as a first step to removing the cancers from Angela's body.
Angela's condition , slowly she is gaining a little more strength but her eyes are still very bad and no strength in her hands and I have forgotten the BAD NEWS .... the CAT scan showed up very small clots in the LUNGS ( DVT) which has to be treated in our case with a daily injection for the next three months in the tummy. Some brave lady is our Angela as between us we are self administering the injection having had some expert tuition from the DVT centre in Treliske and at our local surgery in Devoran........ if someone had said that she would be injecting herself a few weeks ago, the answer was NO WAY but times and needs change.
Tuesday 10th August tomorrow is possibly a very big day and we are trying hard to be as normal as possible. the good news is that after two weeks with no chemotherapy Angela is improving , still major side effects with eyes, mouth, tongue, tingling hands and feet but more strength, more appetite and we have now over last two afternoons slowly done two small local walks about a mile and then back, Brilliant.
Also we now have a GOAL, a TARGET and we are concentrating on this. 12th JUNE 2015 is our Golden Wedding Anniversary, 5 years time and we both feel a party coming on ! I have largely achieved my own target re my feet and I am certainly not in a wheel chair as suggested by a medic 4 years ago and play 18 holes of golf twice a week !
However we are both aware that in order to move forward, Angela must have at least one operation to remove the cancers from the bowel. This is what tomorrow is all about. Sometimes one talks about life and death situations , not really thinking about it too much, For us, we are up against the wall, between a rock and a hard place.................... we will know more possibly on Friday afternoon. but I am not sure how long it will take me to update you., if it is good news then it will be fairly speedy but if not, then it will take a little more time, for me to take in the enormity of it all ! no wonder I have tears in my eyes!.............. I am not enjoying writing this but at the same time I have to be positive and support Angela. and after the bowel operation then the problems in the liver have to be sorted.. ONE AT A TIME
Reading through some of this, I realise that I have not yet really told you the full extent of Angela's cancer and the problems but you will have realised that there is not much good news on the horizon, If there was, the operation would have been carried out weeks ago.>>>>>>>>>>>>>>
However I must now say a huge thanks for all the kindness, professional care that has been shown to us both in all departments so far in Treliske Hospital , Truro. the Sunrise centre dealing with our Cancer and also all those at Haemotology, X ray dept, DVT centre, Pharmacy etc Cancer is an emotional subject and all the staff are very dedicated and highly trained in dealing with sometimes very emotional patients. It is hard enough telling the patient the bad news that they have a cancer, especially when that patient ie Angela seems to be so fit and well. and it was done in a very sensitive way.
FRIDAY 13TH AUGUST NO NEWS
results from MRI scan have not yet come through, so we are waiting. In a bit of a limbo, not knowing what is going to happen but Angela a little stronger every day but still plenty of symptoms from chemotherapy.
FRIDAY 20TH AUGUST Angela has an appointment to see surgeon next Thursday 26th August 10.00 am at Treliske hospital, so I am sure we will know more about the way forward
THURSDAY 26TH AUGUST 11.40 AM. BRILLIANT NEWS but a very long and hard road ahead !
1) Good positive meeting with friendly surgeon who is going to keep Angela busy until Christmas !
2) really good results from the chemotherapy, so the future is as follows in about two weeks primary BOWEL operation , hopefully will be keyhole
3) six to eight weeks recovery during which another PET scan will be taken to check progress
4) MAJOR Liver surgery, may be two major operations possibly early NOvember
, at moment one operation at a time so concentrating on the BOWEL operation, I think it is called a right side resection but will check this.this will be at Treliske hospital. Did not meet the Prime Minister David Cameron but very delighted about birth of their daughter in this hospital !
5) possibly more chemotherapy after all of this to clear up any bits and pieces.
as I have said a very long and hard road ahead, Angela is just marvellous and I am so very proud of her, we are continuing between us to inject her tummy each morning, so far for the last 30 days and another two months to go ! Between us we are a real desire for her to live for many more years and it is certainly not for trying in a most positive way> also continuing praise for the bowel team in Treliske. and also many thanks for all the many wishes of encouragement
FRIDAY 27TH AUGUST 16.45 telephone call from hospital to say that Angela's operation scheduled for next Friday, she has to go into hospital on Thursday .... no details as this is a Bank holiday weekend, we will know more in a phone call on Tuesday.
many many thanks , we have messages from USA, Australia, France and all over UK and Scotland, and wonderful Cornwall , if it takes me a little time to reply..apologies............................... I really can hardly believe this but we have hope, real hope and it has given us both a huge boost. but we are both realistic enough to know there is a long way to go and one day at a time. perhaps not so many tears now !
FRIDAY 3RD SEPTEMBER 2010
operation at 14.00 this afternoon.
now just 22.00 have just spoken to a very drugged Angela , who has just come into the ward from the recovery room, her nurse says that Angela is lovely, operation was keyhole which is brilliant and I can see her tomorrow Saturday afternoon. , will know more details as time goes by ! .................................................................................................... many thanks to all concerned in the ward and operating dept..............................
SUNDAY 5TH SEPT 10.45
a bit up and a bit down ! visited Angela twice yesterday 14.00 and again 18.00,very painfull, lots of drips, lines etc but all this removed in the evening and she took two sets of walking down the red line in the ward corridor and looked and felt much better after the walking. I am no expert but it seems that to do keyhole they fill you up with something gas ? , I must say that Angela looked as if she was pregnant and walking relieves all of this and the pain.
sunday spoke on phone , bit of a down as she was awake at 0500 with a bit of a temperature, thoughts of infections ? but spoke again a few minute ago, he temperature is NORMAL, but he blood count is not correct, she lost some blood in the operation ! so it seems she will be in for one more night. this is turning into a TV soap, what story line is next.... watch this space. ?
Lots of lovely more cards, flowers, messages and emails, thank you all very much, sorry if it takes me a long time to answer or perhaps I do not answer, life is a bit of a round about at the moment, am I coming or am I going ! perhaps senior moments are also involved but thank goodness I can continue to smile a bit and am holding up really well. some of my friends are surprised that I write this nonsense but I can assure you that it helps me enormously ! cancer, operations, etc is all a stress , and more stress, never quite know what is going to happen next, so this is a brilliant way of me getting it out of my system, not worrying and able to deal with the uncertain future.
SUNDAY 20 .00 visited Angela this afternoon 14.30 to 16.00 amazing how patients recover, I am sure fitness is a huge part of this, she was so much stronger and fitter and looking so much better, all functions normal, blood pressure, blood count within normal range , temperature normal, all very encouraging.......... she says her limited food has been very good especially home made soups, cottage pie for lunch... limited of course after a bowel operation,... now we have to get her moving again....... Eleanor and I left thinking she would be in for another night but while we were driving home her wonderful surgeon Mr W, came in to see her in his sporting artire ( cricket we think ) and pronounced her fit to go home....... to recover and build up strength for the next operation on the Liver... we are to see him in a fortnight and will no doubt know more then.
So as soon as we arrived home, we turned around, back to hospital, many thanks to all involved and she is now home !
chef TC just cooked supper , lamb chops, potatoes, cabbge, runner beans, tomato and a courgette, all part of a cunning plot to build her up. ( except that I now realise Wed that this diet note really suitable ! )
20.00 Angela in bed and next job is to help with the FRAGMIN dvt injection, I may have to do it if she is not able to reach tummy. what next ! I did say it was like a soap opera ! but real.
next job is to research best possible for liver operation, is Basingstoke the best or perhaps the Hammersmith ? any ideas ?????????????????????????????????????????????????????
WEDNESDAY 8TH A very sore tummy area but District Nurse has been and all is well on the dressings and wounds. quite a bit of pain and we are learning about the type of foods she should eat with half the bowel missing !
THURSDAY 23RD SEPTEMBER 2010
Meeting in Treliske Hospital with super Bowel Surgeon who has finished with Angela and will see her in 6 months time
RESULTS Angela has done brilliantly ( his words ) all the tests now show that there is no cancer left in bowel and all the lymph nodes are cancer free. not able to tell us whether they were cancerous befor the chemotherapy but it is very important that it is all clear at the moment.
He will contact Mr Rees surgeon in basingstoke with all the results and ask for another PET scan, he wants Angela to changefrom Fragmin to warfarin but we know that mr Rees prefers his patients to be on Fragmin.......... this decision can wait until we her from Basingstoke.
So phase one chemotherapy over, phase two Bowel operation now over and we move forward to PHASE THREE the LIVER. and this is up to MR Rees.......... so as usual , it is now a waiting game but rest assured Angela is ready for anything.......... she is so very very brave !
You may wish to ask about the stage of her Cancer, look it up on the Macmillan website or Cancer Uk , it is called staging. Angela is at T3 NO
I have been very careful not to give you too much information about this rather delicate part about staging, DUKES or estimated life expectancy. I know as Dr Ellis told me right from the onset of all of this but Angela does NOT know. I am not sure whether it has changed as a result of the last 5 months but if you look on google under liver cancer, you will soon realise that it is not brilliant. ! but having said that the results so far, have been brilliant, so we are both so very positive ! It is very obvious that it does help enormously if you are very fit when you start on all of this treatment., Angela was !
also there is as far as we understand it ,no positive proof at the moment ,that there is cancer on the liver, there is something not quite right, lesions, a shadow, call it what you like but the next few weeks will reveal all, may be a biopsy on the liver with a keyhole operation, maybe the scans will reveal all, may be an operation on the liver, may be radiation ???????????? we do not know so will continue one day at a time.
In meantime Angela is now improving on a daily basis , which is just great.
thanks to all for your kindness
For myself, I am told that a lot of laughter, love, and fun mixed with tears will keep my stress levels down to a manageable level... I wear my heart on my sleeve, so it is not easy but I am doing fine , the only thing that has gone wrong so far is that I have a minor ear infection but I have ear problems all the time with the tinnitus, so nothing really new. had to go to Doctors this week for this and met another lovely Doctor in our Devoran practice, we are very lucky, thanks for your help. and being able to talk through the complexities of Angela's case. it really helps.
SATURDAY 2ND OCTOBER 2010,
next stage is another PET scan in Plymouth this coming Thursday , this will give us more information re the current situation. it is amazing that it is now just coming up to 6 months since cancer came into our lives ! what a nightmare..............................and possibly the worst to come.
FRIDAY 29TH OCTOBER 2010
a lot of water has flowed under the bridge since last writing this blog.
1) Victor died peacefully at home in Parkstone Dorset , Friday 8th October.
2) His funeral was this wednesday 27th October with 300 in the church, a lovely man, we will miss you dreadfully Victor and the sun was shining, Thank you for your fun, advice and friendship.
3) Today had the results from the PET scan Thursday 7th October as usual some good and some not so good news. Angela has Diverticulitis, inflamation of the Diverticular, not too serious and the better news is that the PET scan showed no evidence of cancer on the surface of the liver and none in the Bowel. The chemotherapy has been effective. and now for the future ( this does NOT mean that there is no cancer in the liver, I think it means that there is none active at the moment )
4) we have an MRI scan in Basingstoke and a consultation with the surgery team this Thursday November 4th at 11.15 am. this team run by Mr Rees is the best in the business of liver resection but more of this next week.
in the meantime at last Angela is looking really good and the tummy has now recoved from the surgery, so we are in a positive mood ready for the next stage.
Saturday 30th october
this next bit is the most difficult I have had to write since this started, and I am writing this in small type,
hoping that no one will read the next few sentences. when asking Angela to sign the consent form for the operation the surgeon said " you do realise that what I am going to do is not a cure " and of course the answer is yes, we are in a life and death situation and when reading this account of our daily fight, please realise that this is a potted version and I do leave out some of the really bad bits, the anquish, the heart ache, the stress, the crying...... need I go on ! I leave this out as it is vital that we both remain as positive as it is possible.
Now for the bad news, ,..... way back when first diagnosed in April . I asked our wonderful oncologist for an idea of life expectancy based on the situation at that time... remember operations were ruled out and chemo was the only option,......... now you can read about possible life expectancy in any of the cancer web sites and it is not an exact science. so in April 2010 the answer was an average of two years but not three and it might be one.year. We are now 7 months up the line ! in bad moments this bears down on me like a very black cloud and is the very best motivation for positive thoughts for the future.
I feel better now that this is out in the open but please, please Angela does not know and does not want to know this., it was bad enough in April for the two of us to tell our lovely family the bad news. this is a nightmare no parents should have to go through.
Roll on Thursday and Basingstoke at 11.15 am and we will deal with this when we know. it may be very positive news.
FRIDAY 5TH NOVEMBER 2010 ANOTHER RED LETTER DAY MEANING A GOOD DAY AFTER YESTERDAY.
not really sure where to start but
1) car parking is cheaper than at Treliske £ 5.00 for the day.
2) modern MRI department with free tea, coffee, water or choice of biscuits. ( you can see where my prioritiesl are !
3) After scan about 12.45 , reported to information office on first floor of liver dept, there were 5 patients waiting for a scan and then appointment with liver surgeon
4) Appointment to be at 14.30, so lunch in restaurant of roast ork and all the trimmings. very nice !
5) we were the 4th patient to be seen about 16.00 no complaints as it is just brilliant to have scan and surgeons appointment on the same day.
6) Miss Walsh just super,and the results of the scan are as follows.
a) Angela's is a very complex case with complications such as the diverticulitiis which might be just that or
might be more cancer in the bowel dept, ACTION Angela needs another COLONOSCOPY to
check it out , this will be in treliske
b) the DVT or pulmonary embolism in the lungs is a problem and Angela needs an umbrella or vena cara
filter fitted ready for the operation stage
c) Operation in Basingstoke provisionally booked for Monday 29th November, this will be a resection of the
liver. the liver is an amazing bit of kit, it is in two sections and can regenerate.
d) the news is that one half of Angela's liver needs to be cut off and put in the bin !
the other half has3 or 4 spots of cancer which may be able to be cut out or a second
operation undertaked when the first bit has grown back and this other cancerous half then chopped off and binned ! sounds easy and we are both amazed at the skill and professionalism in the whole team that will undertake all of this, and we are very grateful to be given the chance of life.
7) a few caveats, it depends on a number of other factors but we hope nothing that determination cannot sort out.
8 ) THE REALLY GOOD NEWS IS THAT 70 YEARS OLD IS NOT OLD !
9) THE PATIENT NEEDS TO BE UP TO IT ! AND aNGELA CERTAINLY IS !!!!!!!!!!!!!!!!!!!!
10 ) YOU NEED TO BE FIT IN THE FIRST PLACE TO UNDERTAKE THE MAJOR OPERATIONS TO COME AND ANGELA CERTAINLY WAS VERY FIT. WE PLAN TO GO OUT WALKING EVERYDAY !
THE WIRES ARE ALREADY BUSY BETWEEN TRELISKE AND BASINGSTOKE AND A SLOT IS BEING FOUND FOR THE COLONOSCOPY ASAP. brilliant co-operation between the two hospitals......... brilliant and many thanks.
Saturday 6th November
very remiss of me, I have lost my manners in all the trauma but we have recieved so many messages from all over the world, it is very humbling that so many people are helping especially with prayers in many churches all over the country and in USA. thank you are so very much,
please forgive me if I do not always reply, each message is read by both of us and very much appreciated. I have tears in my eyes as I write this>
I write this blog not only to inform but also as a tremendous help to myself to get through all the hurt, trauma and unbelief as to what is happening to us both. I have been told that these words are a masterpiece of positivism ( if there is such a word ) thank you for this, I am so pleased that you do not see the tears and anquish that happens on a daily basis, we seem to weep seperately and also together and this is a great help and binding together for the ordeals to come. I am so proud of my darling Angela, it is no joke to go through the double traumas of knowing how ill you are and at the same time the pain and discomfort of the various medical proceedures... we have a daily anquish of the self injection into the tummy in the evening.............. I am not sure that I could cope with it all as I am the sqeemish one but have we both have learnt is that the body and mind are great healers in conjuction with NIL negative thoughts and we have now banned all negativity and just look forward with positiivity..... this afternoon we were talking about our next holiday and the next question was when and where ? answers on a post card or email ? it is good to laugh and joke and we came to late April / early may as being a good time and that we should write off 2010 as our horrible year !
I have just read the sentence below which I wrote about 6 months ago, not sure about the evil bit, I think we will look at the cancer as a minor local difficulty as thus something you can sort out .. I have a philosophy about M.L.D. minor local difficulty and Problems but will talk about this later.
time going by very quickly, we must be having fun in a very strange sort of way ! I expect that the previous words make no sense but life is rather special when ones darling is very ill with cancer and with an uncertain outlook.
so what is happening........................................................
1) the operation has been put back a week so is now to be MONDAY 6TH December 2011
2) the umbrella proceedure and pre operation assessment will be in Basingstoke sometime the week before the operation.
3) as I write this Angela is drinking a litre of laxative potion together with another litre of water and the loo is being well used. This is to be repeated tomorrow morning Friday and the colonoscopy is 15.20 in the afternoon.
lets hope that nothing more aweful is found.
4) we have cleared all our diaries for the week from 29th november , so now must cancell all the following week, a small price to pay.
5) somewhere on the net yesterday I found a blog from a patient who had just had a liver operation at basingstoke and she was out after 5 nights and so far doing very well
6) We keep telling our selves that surgeon Miss Walsh said that Angela was YOUNG and FIT.
7) sensible things are that we have been talking to accountants, financial advisors, solicitor etc and having to face up to possible death and making sure that all is in order. Not an easy thing to face up to but very necessary.
8) another bye product is that we have been lucky to have seen much more of our lovely family and 5 granchildren, what a very great joy and priviledge it is to have the next generation with their smiling faces and wanting to help Grand Pa.
SUNDAY 28TH NOVEMBER
GOOD NEWS AND NOT SO GOOD NEWS, NOTHING BAD.
1) COLONOSCOPY UNCOMFORTABLE BUT FINE, it all looks clear but one very small polyp cut off and taken away for analysis, no resutls yet.
2) Not such good news is the bad weather and snow, we had snow here at home yesterday, so it starts to make the planning of our one or two journeys to basingstoke more difficult.
3) reason for delay in operation is that Miss W. has not yet spoken to our Oncologist MR R. as he is away on a much deserved holiday. We understand that Angela's file is on the TOP of his
IN TRAY for tomorrow morning Monday.
4) The TEAM meeting at basingstoke is Tuesday, so hopefully we will know more late on Tuesday.
5) The timetable will then be Basingstoke for the pre operation meeting and the INSERTION of the umbrella Vena Cava filter into a main vein wed, thursday or Friday ?>
then Sunday afternoon admission to basingstoke hospital
Monday 6th December operation and remain in hospital for 4 or 5 days and home perhaps, friday, saturday or sunday, ??????????????? all with many question marks ?
WEDNESDAY 1ST DECEMBER 2010. THE LATEST NEWS.
1) we are off to Bournemouth later this morning, it is much closer to Basingstoke , weather not good and we
have important legal documents to sign, new wills etc, it all brings you down to earth and reality with a bump !
many thanks to Christopher and all at Druitts solicitors Bournemouth and also to accountant Paul in Truro.
2) thursday 2nd december at 15.00 Angela to be admitted to basingstoke and north hampshire hospital,
Aldermaston Road, Basingstoke Hampshire RG24 9NA
at the same time I am checked into Viridian housing on the hospital campus, it will be like going
back to a hostel... the last time was the YMCA in Stockwell London exactly 50 years ago !
3) Friday 3rd December. the vena cava filter to be inserted at 12.00 and then the pre op stuff in the afternoon.
4) Saturday 4th december not sure what is happening? is Angela to stay in Hospital ?
5) Sunday 5th December Angela has to be back in hospital in the afternoon ?
6) Monday 6th december operation am ? takes 3 to hours ? Angela remains in the recovery area until
Tuesday sometime ? I may be able to visit on Tuesday pm but someone telephones me as soon as operation is over
7) Tuesday, wednesday, thursday, friday possibly saturday, maybe Sunday in hospital
8) home sometime and then several months of recovery.
many of the details will become clear during the pre operation meetings and tests on Friday 3rd but I will not be able to put this information on this site until I return home
so the phone will come through to my mobile so it is 01872 863537
and I will I hope be able to pick up my emails on my borrowed laptop, ( thanks Eleanor )
this is a strange moment as I sign off! it is a huge leap into the unknown but the comfort is that we know that Angela will have the very best treatment, brilliant surgeons etc etc.
tears in my eyes, so talk to you later.
many, many thanks for all the encouragemt, this is not easy
ps now 10.10 am.
I think it is Saturday 1st January 2011 but I really am not sure as each day is the same during this very difficult period of our lives and our Cancer saga. ! I have nothing but praise for all at Basingstoke Hospital but writing on a general note I would really not advise anyone to have Christmas and the New Year in any Hospital but let me go back a few weeks FORGOT TO SAY HAPPY NEW YEAR !
oPERATION AT SUCCESS MAIN PART OF LIVER TAKEN AWAY PLUS SOME LYMPH NODES, FOUR HOURS PLUS
FOLLOWING 6 DAYS EVERYTHING WENT WELL and we were due to go home Monday 13th but this was the day of the coming snow and Mr Rees surgeon was not happy about the drain from the wounds and also liver not quite working properly, so advice was.......... you are getting there Angela but it will take a few more days.
will not bore you with the saga but it took another anxious TEN days to get everything working properly, bucket loads of pills, infusions, daily clexane injection , pills for this and that plus anti this and that plus anti biotics until they go out of fashion, ( all staff, doctors surgeons junior doctors registrars , ward nurses etec etc just incredible ) and at last eveything seemed to be working. drains out. stitches out and there was talk of departure for home last Friday , New Years eve after 4 weeks in hospital. !
just our luck, another infection in the drain wound started up with nasty looking puss of some sort or other which has been sent of to be cultured, so more or all the above... pills etc again , the problem seems to be all the bad reactions to the mass of chemotherapy that was used a few months ago and Angela is suffering from the side effects, weepy eyes , sore mouth, heavy legs and neuropathy in hands and legs, ( legs painfull ) so it is no picnic at all and not able to read, or do anything very much except be in a stupor of drugs ! sleeping or dozing........... what a way to have Christmas and the New year but weare both resolved to come through this in good heart, humour and a look forward to a better year in 2011................ lets face it.......... in a few months time we will laugh at all of this and make a joke about our treatment, wonderful surgeons etc and also our alternate NHS festive season !
this is my last missive for this year, sorry if this is so boring but it is my way of dealing with all this trauma
and it is all a small price to pay if you just think on the following
summary for 2010
Jan to April life as normal, Angela has NO symptoms of cancer
April if the Cancer had not been picken up, then Angela only had about 8 to 9 months of
life expectancy, probably no NHS christmas !
April Bowel Cancer with secondary liver cancer detected , no operations possible and a life
expectancy of an average two years
April onwards thanks to some very clever people chemotherapy was a success and as a result operations possible, firstly a bowel operation and then a liver resection , about 65 % of the liver taken away.......................... it has been a very challenging year
Angela is a star, so determined, so very , very brave, never a moan and very determined
to remain positive, in spite of anything that is jabbed into her plus many other very painful
proceedures. I am so proud of her
update Sunday 9th January 2011 we are home in Cornwall, after 5 weeks and three nights in hospital plus major operation followed by problems and ending up with shingles Angela is as weak as a kitten and no strength for walking , only a few steps at a time....... however very determined as improving a little each day ... no thursday able to walk a little from room to room on her own, it is going to be a long time......shingles not nice, painfull etec etc and am sure she will improve once the shingles out of the system may a month ! what a nuisance.
- Dec 31st 2010 good bye and please give us a better year in 2011
- please do not click onto next year ................ ( am writing this Thursday 13th January as I am having problems getting my blog so move onto next year 2011, so will continue to update on 2010 for the moment
please look under 2011 as the saga continues ! in either case I would not recommend what this last year has thrown at us , to anyone and can only hope for a better year in 2011, must add the support from so many people , some comparative strangers has been very heart warming and a huge comfort, thank you so very much. SO 2011 STARTS FROM 19TH JANUARY 2011 ONWARDS. SO PLEASE NOW RE- CLICK ONTO NEXT YEAR. to do this, please scroll down a little bit more
many thanks for keeping in touch, love to all.
.This is an irregular blog..but hope it keeps you in touch, it really helps me sober and on the ground
if you have any bright ideas I can be contacted by email on firstname.lastname@example.org
or 01872 863537 and thanks for being in touch, these are difficult times but anyone who knows us both , will realise that we are tough and have a will to succeed and this is what we do every day and one day at a time, this is a necessary evil and we understand
Have a nice day, and keep smiling ( we do as much as possible) !
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