Recently diagnosed, our journey so far.
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Kate,
I am so sorry to hear of your mom’s passing. I’m glad you were with her at the end. My condolences are with you and your family. I pray the hurt and anger can be replaced with acceptance and you can fill your thoughts with wonderful memories you have of your mom.
Hugs,Dear Kate,
I am so very sorry indeed to hear of the passing of your dear mum. Please accept my sincere condolences. Having lost my dad to this disease I know the pain that you are feeling right now. Please know that we are all here for you and y thoughts are with you and your family right now.
Hugs,
Gavin
Dear Kate, I am so very sorry to hear about your Mom. I know that you know she is now in a kinder and more peaceful place. Please accept my condolences
and know that mothers never really leave their children and she will always be around you.To my dearest family some things I’d like to say
But first of all to let you know that I arrived okay,
I’m writing this from Heaven. Here I shall dwell with God above
Here, there’s no more tears of sadness. Here is just eternal love.
Please do not be unhappy because I’m out of sight
Remember that I am with you every morning, noon and night.
That day I had to leave you when my life on earth was through
God picked me up and hugged me and He said “I welcome you,
It’s good to have you back again,
you were missed while you were gone,
As for your dearest family, they’ll be here later on.
God gave me a list of things that he wished for me to do
And foremost on the list was to watch and care for you
And when you lie in bed at night, the days chores put to flight
God and I are closest to you . . in the middle of the night.
When you think of my life on earth and all those loving years
Because you are only human, they are bound to bring you tears
But do not be afraid to cry, it does relieve the pain
Remember there would be no flowers, unless there was some rain.
One thing is for certain though my life on earth is o’er
I’m closer to you now than I ever was before.
There are many rocky roads ahead of you and many hills to climb
Together we can do it by taking one day at a time.
When you’re walking down the street and you’ve got me on your mind
I’m walking in your footsteps, only half a step behind
And when it’s time for you to go . . from that body to be free
Remember you’re not going . . you’re just coming here to me.Hello everyone,
Thank you all for your support and encouragement. Unfortunately Mom passed away last week due to her CC.
She was taken back in to hospital 6 days before she passed, Dad had a phone call in the morning to say Mom was agitated and distressed and that we should all go to the hospital to see her.
Mom passed away shortly after we all arrived, we were all with her and told her we loved her.
Even though it was expected it doesnt prepare you for when it does.
There will always be a big void in out lives as Mom was such a bright and bubbly character.
We have lost a diamiond but the skies have gained a star.
Kate.xxx
Dear CurlyWurly,
I’m so sorry to hear of your Moms progress. I can 100% understand how you are feeling with regards to Prof Lodge. When Dad was diagnosed he chose to listen to Dr Bramhall at the QE and have chemo, we never got to chemo due to Dads bilirubin being to high despite 3 metal stents. I often wondered if I should have pushed Dad to see Professor Lodge sooner, rather than when we were told in the September that chemo was no longer an option. I felt we wasted 6 months but this was my Dads choice and we had to respect it. I did write to the macmillan nurse Catherine at the QE after Dad died and she passed my email onto Dr Bramhall highlighting my concerns regarding not operating on Dad as Professor Lodge would have done. He replied to me offering to send my Dads scans to another hospital for their advice as he was certain an operation wouldn’t have saved Dad, it may have given him a few more months but the quality wouldn’t have been good. This did make me feel more at peace with our decision. He would have spent his last days possible in Leeds, miles away from family. His wish was to be at home, which luckily was able to be. Perhaps you could mention this and all your other concerns to the QE, and see what they have to say.
As for weeks or months, nobody knows. Nobody as a expiry date stamped on them, and I know it’s hard but you really have to live day by day. Dad was told by Russells hall hospital he’d got 2-3months, he went on a further 7. My heart breaks for you as I can remember every day of Dads journey with CC.
Thinking of you all x
Dear Curleywurley, I too am sorry for what your Mom and you are both going through. I believe there comes a time when we trade places with our parents, a very hard thing to do and Mom is not doing herself any favors. IF she is nearing the end she is using what energy she has on anger and discomfort. It takes a lot of good energy to have that not so good attitude when it is needed for her comfort. This is a time for making a few more good memories even if they are at home and the bottom line is comfort. I would talk to her Doc and ask him what he would do if it was his Mom. I do have a short article on how to know if the end is near and would e mail it to you if you like. I only do that if someone requests it. I also like Clare’s idea of having your Mom’s GP tell her what is really happening. Best of luck to you and Mom.
Curlwurly35…..I am so sorry to hear of the latest developments. My heart is with you and your family. May these times of anger and regret be replaced by love and tenderness. These are the most precious of moments to harness forever.
Hugs and tons of love,
MarionDear Curlwurly35,
This must be incredibly hard for you and your family. I strongly suspect that your mum knows she is not going to get better.
What support are you all getting? Have Macmillan nurses or Marie Curie been involved or mentioned? How involved is your Mum’s GP? Are district nurses coming in? You should not be having to manage the emotion and end of life decisions on your own without professional help. It is mentioned a lot on the forum that we don’t have expiry dates stamped on the bottom of our feet and whilst it’s not an exact science, I do believe that professionals (such as Macmillan or Marie Curie) do have an indication as to how long an individual might have.
Even if your mum does not want any involvement from Macmillan or hospice, they can still support and help you and the rest of the family. Your Mums GP or consultant should be able to get this done immediately for you
I forced my sisters GP and consultant to take my sister back to hospital and tell her prognosis. It was just not something I felt I could do on my own. Nobody had officially told me a timescale but her decline was rapid and she needed to know that chemotherapy was no longer an option. We all thought she didn’t ‘know’ but my sister eyeballed her consultant and asked him how long she had. He told her 2 months at best and she died 2 weeks later. Those 2 weeks allowed her to do the things she wanted and needed to do and despite us thinking she didn’t know the true picture, in reality she did. I’m not trying to be blunt- what I’m trying to say is if you go with your gut and if you feel she is declining quickly then do what you can now for her. Put your energies into what you can control now for her.
You have been doing everything for her that you possibly can – please don’t doubt your actions and decisions. Use your energies to continue to do the best for her and spend time with her.
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I’m so sorry for you and your Mom. It is difficult to cope when your Mom doesn’t want to discuss her feelings or her condition. Please don’t second guess your decisions. We did that for a while and its a waste of energy and time. Most cases are inoperable by the time of diagnosis and even when scan shows its “borderline”, the surgeons often find its not during surgery. My sisters tumor also had invaded the portal vein and they code to do chemo first , but all doors to surgery were shut quickly due to growth there. Anyhow, we have adjusted our minds to try to take one day at a time and find joy in every day we can. Take care, Willow
Hello everyone
A further upday on how Mom is.
She is now home from hospital after spending nearly 2 weeks there being treated for her infection. She has been given a prescription for a 6 week course of antibiotics along with a concoction of other tablets to help control symptoms.
All in all we’re at a loss as to what to do now. Mom from the beginning has not wanted to know any details of her condition/progress. From the beginning she has not wanted to know her prognosis, this was made clear to all Drs and medical staff. This is why they told us and not Mom that there was nothing else they could do for her.
I dont know if Mom thinks she’s going to get better now and that her being so poorly is still her infection. It’s so difficult because I just don’t think I have it in me to tell her that the end may be near. I worry that her symptons over the last couple of days are signs that the endi is getting closer as last night she had diarreah and this morning she was vomitting a black looking substance.
At no point have we been able to discuss this disease with her, to know how she is feeling and what she understands etc. I feel like I have limited time left with her and there are things I want to talk to her about, learn the things she’s never told me etc but she doesnt want to talk about things at all. I feel like we should know her wishes for things afterwards but I can’t approach the subject. She does not want to see any of her friends or speak to anyone either. It’s a shame to me that this may be her last chance to see her friends but she is blocking people out.
She is so angry with everyone and everything, which is understandable. But I hate to think she may be spending her last time with such anger.
I honestly do not know what to do for the best.
Also, I received Proffessor Lodge’s medical report from Mom’s initial and second CT. He stated that Mom presented with a borderline operable/inoperable condition. I am devastated to think that had we known to contact him sooner then we may have been able to operate. The consultants at the QE told us at the beginning that if her cancer does not seem to respond after the second scan they would try a different chemotherapy regime. We were told from the QE that the results of this scan were promising and they were pleased it had been stable yet Proffessor Lodge’s report said he’d seen a growth of 1cm so I am now questioning the QE and why they didnt change the chemo regime. He also said that if the results of the scan at early June show a stable condition then he would consider seeing mom with a view to discuss possible surgery. However, the results showed that mom’s tumour had grown to 14cm, a further 5cm since February.
I too feel so angry.
Hi curlywurly35,
I am so sorry to read about your mums deterioration. I understand how hard it is to comprehend after watching my sisters rapid decline with this disease.
I would focus on what needs to be done now to ensure the best care for your mum making the time she has as comfortable, pain free and full of her wishes as possible. The palliative team should be able to address all of this with you.
In relation to questioning what has or has not been done, as a relative you did what the medical profession recommended. Whilst being a great advocate for your mum you cannot expect to be an expert on such a complex disease so please do not doubt your own actions. Everything you have done has been out of love and with the best of intentions for your mum. That being said, there may well be questions and issues that you need to put to the professionals to answer the doubts that you have.
Time is precious. Take care of yourself too and please let us know how your mum and you are.
Dear Kate, where to begin. I am so very sorry to read of your Mom’s journey. To keep asking and wondering about what might have or could have been will do no one any good. Take some deep breaths and FORGE ahead. I am not familiar with your System there BUT is there a possibility to get Mom transferred immediately to Prof. Lodge? If not that, what about a phone call to Prof. Lodge asking him what he would do if this was his Mother. While you are deciding what to do please make sure they are keeping Mom as comfortable as they can. None of us ever know exactly what to do as this CC is like a strange monster who has invaded our lives. You do the best you can. A septic infection takes time to leave, but maybe once the infection is cleared up your Mom will begin to feel better. I am not a medical person, I tend to listen to my gut feelings and about all I can really come up with here is to see if Prof. Lodge would talk with you. Wishing you the best results and please keep us posted. Be strong!
Hi All
Thought i’d give you an update on what’s been happening.
Mom has been really poorly these past two weeks with a septic infection now thought to originate from her liver. She has been having IV antibiotics, blood transfusions, insulin, fluids and painkillers so far. She’d been taking steroids, sorafenib and painkillers and they think they’d worn her stomach lining away to cause bleeding as well to add to complications.
When she was admitted they were really worried about her, the Drs asking us if she had any ressusitation requests!! you can imagine our shock!
We have since been told results from her latest CT scan which shows unfortunate progression in her disease. Since February her tumour has progressed to 14cm and they have now said that further chemotherapy is not an option and there’s not much else they can do! :'(
They are hoping mom to return home this week and involve the palliative care team to help control the symptoms and become more comfortable.
The Drs at our local hospital where mom is now have told us she my only have a few weeks left while another has said months. :'( we are all devastated.
Today I have received Professor Lodge’s initial medical report based on her scans from February. He said that mom’s case originally was borderline operable/inoperable so now I am questioning everything we have done to date with regards to mom’s treatment. I am also kicking myself as to why I didnt know to contact Professor Lodge sooner.
We were told at Christmas that if following the first scan following chemo treatment Mom’s condition was not improving they would change the chemo type. We were told in february following this CT scan that her condition was stable and they were pleased with her yet Professor Lodge’s report notes a slight progression to 10cm. I am now wondering why the QE didnt change her chemo treatment at this point like they initially said they would if the treatment was appearing none responsive. Now mom has had to undergo months of further chemotherapy which hasnt helped to leave us in a position that no further treatment is possible.
It was also said in his report that should we have been sent to Leeds Mom would have had an MRI and PET scan to stage the disease more accurately, and if things appeared stable following the more recent CT scan then it would be worth a visit to see him to discuss things.
I am now questioning the treatment we have received to date at the QE and wondering if more could have been done to treat my Mom. She is so incredibly poorly still and to think she is not going to improve is heartbreaking for everyone involved. Maybe we have been naive these last few months hoping for a stable condition but to think that in such a short space of time Mom’s condition has deteriorated so dramatically is unbelievable. We are all still in complete shock that this whole thing is happening, everything to date just seems so surreal.
:'(
Hi Curlywurly,
I hope they manage to get your Moms pain under control asap.
Whilst my Dad wasn’t able to be treated by Professor Lodge, the treatment we received on the day of our consultation was outstanding. Dad and I met with Professor Lodge at 9.30am, after a chat and an examination he arranged for a CT scan and blood test to be carried out. He even came out of his meeting at 3.30pm to give us the results face to face. We stayed in the hospitals hotel, which is free for the patient and partner, and I think i paid £25 for my room. We travelled up the night before because our appointment was early in the day.
I emailed Professor Lodge directly then he put me in touch with his secretary, who once had recieved my Dads original CT scan and Professor Lodge had looked at it, phoned me and booked an appointment for the following week. She then gave me the telephone number for the hospital accomodation. If you search Professor Lodge on here there should be some posts regrading him.
Good Luck
Andie x
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