My wife – aged 56
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Tony, no need to apologize for how you are feeling. It is normal & understandable.. Many of us, myself included have been there too. It seems like one day life is normal and you are planning the future and the next we are dealing with things we couldn’t even imagine.
I too am hoping you get some better news on Monday or at least an idea of what direction to go in. Let us know how things are going when you can.
Take Care.
Darla
Thank 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
Tony
I have just spent a week in a hospice and they did wonders for pain management and rebalancing medications. I am now back home and feel more energised as I have the pain under control. I think it would be so worthwhile your wife trying a hospice just for some respite and to help her with the pain management and other issues she may have or just to talk to other people in a similar situation to learn how they are coping.
Did you contact AMMF? They really are an amazing organisation and will be able to give you so much benefit from their experiences and knowledge.
Best wishes
SandieDear Tony,
I am very sorry to read this post and hear how this disease is affecting Karen. I can understand apprehension on going to Marie Curie, but one thing I’ve learned from being on this board is that hospice care (I assume Marie Curie is similar) can be brought in earlier and the focus is to make the patient comfortable.
You will be in my thoughts and prayers-
Catherine
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
Tony…….how wonderful for you and I share your joy. Congratulations on both, the soon to happen arrival of your first grandchild and the upcoming 40th wedding anniversary.
Hugs,
MarionHello 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
Tony
I too have CC and live near Nottingham. I had a liver resection in January 2012 but a year later it recurred in my lymph nodes. I was told I had a maximum of 21 months, that maximum date came and went . Don’t use the any dates you are given as a target or guideline, we are all different and a positive attitude together with lots of love, fun and laughter is the best medicine.
The Christie is excellent and I would also encourage you to contact AMMF who are the only cc charity in the UK and are absolutely excellent.
I wish you are your wife the best.
SandieTony…..can’t agree with you more, cancer patients need to shift from weight conscious to weight gaining. Perplexing it is. As mentioned by Lainy, grazing throughout the day is preferable to large meals. Protein is the building block of our cells, hence it makes sense to significantly increase protein intake. Light activities such as small walks also can prove to be helpful with not only digestion, but with overall well being as well.
Amazing, dear Tony, what we learn from our loved ones touched by cancer. I admire each and everyone for their strengths, determination and willingness to conquer this disease.
Hugs to all,
MarionDear Tony, it is obvious that Karen is indeed a very strong woman. My personal feeling is that EVERYONE else needs to pull on their own strength now as well. I know, been there done that. When one is really trying to be strong and others around them are not, it fights the strength you are trying to provide to yourself. This is a long haul and you need all the strength you can muster to fight this CC. When it comes to the “eating” CC patients really have a hard time especially when on Chemo. Instead of “big” meals try what we call grazing all day. Small bits of food more often. Comfort foods work well like homemade soups, pastas, eggs stews. Also Nutritional Drinks like Boost or what you have in the UK. You can even blend some fresh fruit into a vanilla drink.
Best of luck with the GEM/CIS and know that you are with a great Doctor. I can’t help with the Travel Insurance but make sure she is really able to made the trip and you might want to ask Prof. Lodge if he knows of anyone you can contact in Italy should the need arise.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
Hi Leeds, UK – this is GoonerJack in Manchester, UK.
Glad you are considering Christie; I’ve been seen by their consultants and strongly recommend Christie as it’s probably the leading UK cancer hospital.
At 74 years young, I had a 6 month prognosis over a year ago! My approach has been to ignore the time-scales, keep busy (I’ve got a large close family, two Internet based businesses, Gym 3-4 times a week, Pilities, running up to 5k a couple of times a week). Don’t accept any negatives and keep positive.
More on my earlier posts. Great to hear from a fellow Brit.
Best wishes
Dear Tony, welcome to our remarkable family but sorry you had to join us. You have done the right thing in getting other opinions and Prof. Lodge is especially experienced in CC. What we hope for are the new treatments that seem to pop up every so often. Hoping for the reduced dose of Gem/CIS to work some wonders and so glad you persisted in posting to us again. Wishing you and your wife all the best and please do keep us posted as we truly care.
Tony,
I’m glad you reposted as it does appear your original posts were lost among the discussions. I would like to give you a very warm welcome and say that although I’m sorry you had to find us, I am glad that you did and that you didn’t give up on us.
I’m glad that your wife seems to be doing OK for the moment and hope that things improve as she starts her treatments back up.
I’m sure others will be on to welcome you soon. We are a great group. Very supportive and helpful and the best place to be when dealing with this relatively rare type of cancer.
Please keep us updated as to how she is doing. We do care. Thanks for giving us another chance.
Wishing you the best in the New Year.
Darla
I did post this a last month but it was probably lost amongst the traffic on the forums
My wife 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.
Surgery, Cyber-knife and PDT were not possible as the cancer had spread into her lymph system as far as her neck.
She struggled with her first cycle of chemo so the dose is 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 starting to show itself.
Since December has had one cycle of Chemo and starts her second one on the 7th Jan. This is delayed as she wanted to be able to enjoy Christmas. Since recovering from her first cycle she has minimal discomfort and no pain
She 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
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