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Thank you for your kind words and messages. It’s been two weeks since Karen died and one week since her funeral. Friends and especially family have been immensely supportive, they are trying to keep me busy. Karen’s fondness for dogs knew no bounds and I seem to have inherited the afternoon walk routine she did for our eldest daughters Labrador.
It won’t be easy, I never believed it would, but with good luck and the strength of others I’m sure we will pull through.
Thank you for your very kind words and thoughts.
Karen passed away 55 minutes ago at 05.35 gmt.
In the end she was at peace with our 2 daughters and myself at her bedside.She leaves a whole in our life that can never be filled. We will miss her presence and pearls of wisdom.
God bless my darling.
TonyDear all
Monday has produced the worst. To be fair it was no more than expected.Karen’s situation is the result of progression. All the medical team can do is to offer comfortort. We feel that they have done the very best they can.
It’s now just a matter of time – a few days perhaps.
There are three generations sat at her bedside. We have been with her for the last two days and will stay with her for as long as needed. We are reminiscing the good times and my memories before the girls were born.
We are sad but thankful for the many years we have had together.
TonyThank you for your kind words. Karen spent 10 days 11-20th May at the Marie Curie hospice for pain management and they set her on the right track. She was admitted there again Tuesday of this week. We have spoken with Helen at AMMF and set up a just giving page for our vow renewal which is a week today.
I do wish I had good news to report. Karen has had a bad start to June.
She has been suffering pain in her lumber back for some little while, radiotherapy on the 18th May was beginning to show signs of being successful.
She then suffered a catastrophic setback on the 31st May. This cancer moves so fast that what appeared as a few spots on T5 of her thoracic spine on the 13th May had developed in 2 and a half weeks into a life changing condition.
She was pottering about on Monday 30th May, went to bed. Woke up at 8am Tuesday and needed my assistance to get out of bed and go to the bathroom. I returned her to bed and called her doctor who was out within 90 minutes. By that time she was only able to move her feet and toes. She was admitted straight away to Bradford Royal Infirmary. By 4 pm all she could move was her right ankle and by 6pm that too had gone.
T5 had collapsed and caused irreversible damage to her spinal cord. Her doctor’s view is not only will be unable to stand again but he doubted she would be able to use a wheelchair. She has no control over her body from the chest down.
Radiotherapy on the 2nd June targeting the affected area has a 2% chance of her regaining the use of her toes.
Her neck vertebra are clear.
Her mood has changed as she can’t see a way forward. We are doing our best to restore her spirits but we fear she is close to giving up. Tomorrow will be 7 months from diagnosis. A month before than we were walking the hills of southern Scotland together without a care in the world planning our retirement.
I’m sorry to sound so maudling. I hope for better news next Monday when I meet with her consultant who should be in a better position to advise if her state of mind is the disease progression or her body’s way of dealing with the trauma in her back – Tony
Karen underwent 4 cycles of Gem/Cis which was ineffective. At the scan 10 weeks ago the tumour had grown 3x and is now 28mm, further cancer was found in 3 vertebra in her lumbar spine. The Doctors view is that her bones are crumbling. She has lost about 2” in height and is in immense pain. The drugs are not working and an epidural in her spine also had minimal benefit. She underwent radiotherapy last Wednesday (18th) at the Yorkshire Cancer Centre in Leeds and is understandably feeling worse now than she did before. We hope the radiotherapy gives her some relief, we are running short on options.
Sadly she has new, fresh pains in her chest and upper back which is further growth of this most horrid disease.
Shortly after Karen’s stage 3 diagnosis in November last year we decided to bring forward from next year the renewal of our wedding vows, it will be 39 years on the 18th June. Given her present condition we wonder is she will be strong enough to manage the day.
Marie Curie have offered her a bed, to see if they can get no top of her pain but she is reluctant as she feels if she goes in, she may not come out. Even the birth of our first grandchild on one week ago hasn’t lifted her spirts.
We are at a loss to understand how this has happened do rapidly. Last October we were walking the hills in Scotland but we are trying to be strong for Karen’s sake. There are so many family events coming up over the next year or so that we would dearly love her to be at.
Tony
Hi Dingdowner
Welcome to the community.The NHS are not the best communicators. If you don’t ask your don’t get told! My wife has a metal stent and as such should last up to 1 year. Last month she started to show signs that the stent may becoming blocked. Blood tests showed that her liver is performing within tolerances. In fact her CA 19-9 levels have nearly halved since mid November. They are still an eye-watering 34,000, down from 60,000.
After 4 cycles Karen had her mid treatment scans 10 days ago, results expected at this Thursday’s meeting with her oncologist. A very nervous time as we hope and prey Gem/Cis is having a positive effect.
Hello Marion and Sandie
Thank you for responses. We are generally a fairly positive family and whilst Karen is able we are looking to make the best we can of life.There are a number of family events coming up in the next 18 months ranging from the birth of our first grandchild in 4 months to our 40th wedding anniversary in June next year. So plenty to look forward to and keep fighting for.
Tony
Thank you for kind words It is very much appreciated
We’ve had a good few weeks, Karen decided to defer her second cycle so she could enjoy Christmas and the New Year. She restarted last Thursday, Her dosage is also being reduced by 25% in order to combat the ill-effects from the first cycle.
Apart from loss of taste and a few aches and pains she seems her old self. She has even gained a few pounds. It is odd as you spend most of your adult life trying to keep your weight in check or even loose a few pounds and we are badgering her to keep eating.
Prof Lodge suggested she eat proteins to try to off-set the muscle loss the cancer burns up. So far so good
She is 2 months on from her initial diagnosis and she tells me she hasn’t felt better since September when her liver functions went askew prompting the investigation
We are considering a short trip to Italy – however the travel insurance costs are very high. GBP1000 for a week
I just don’t know where she gets the inner strength from, while the rest of the family are falling apart she bounces along.- long may that carry on.
Tony
There has been no activity on this thread for 4+ years
My youngest daughter has read about cannabis oil and to be honest the health professionals in the UK seem to have little understanding about this product.
There are success stores out there but I just find them too good to be true and put little credence in what I read.
I would be very interested to hear of anyone who has used it, first hand or family experiences and thoughts on its efficacy – Tony
I’m very sorry to hear of your wife Frank.
My wife Karen was diagnosed with later stage 3 cc on the 11th November 2015. The family was in shock as the first instance we had of a problem was 6 weeks earlier when she complained of a nervous tummy. A blood test indicated a liver disorder and after 3 weeks of hospital investigation cc was diagnosed. They are unable to operate and gave 6-9 months, depending on the success of chemo. Gem/Cis was offered.
We spoke with Dr Leslie Blumgart on the phone he suggested a couple of other specialists in the UK we could meet with. The Christie in Manchester and Prof. Lodge at Spire, Leeds.
After reviewing the case notes and scans they came to the same diagnosis although Prof Lodge felt that our local hospital were pessimistic with the prognosis and suggested a 50/50 chance of chemo working and if it did then she may have 1- 2 years.
Cyber-knife and PDT were not possible as the cancer had spread into her lymph system as far as her neck.
She has struggled with her first cycle of chemo so the dose if being reduced by 20%.
A bile duct stent restored her appetite and we have managed to keep her weight up although the anticipated muscle wasting is evident.
Karen is fairly young (56) fit and strong so we are hopeful as hope appears to be the only thing that we can latch onto at the moment. – Tony
