It’s not over until the fat man sings, right?
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The oncologist comes up for a few days each month and is very available for contact if I need him between times. The travel is a bit much we only just got a MRI up here so a PET is sure to be a way off yet. I have put of Gawler until next year after the scan I just decided I wanted to spend as much time with my children as possible. Have started his diet and eating plans, mediation etc we will see what happens.
Wendy,sorry you have had a rough week and bad news with the scan.What a business for you all that travel.Do you have to fly down for the oncologist too or do they come up on a regular basis.
When do you do the Gawler workshop,is that in Victoria?That should be a more positive experience for you JanetI have had a cow of a week, am I allowed to say that? I had my first CT scan post opp and my partner and I decided we would count off the clear scans (which I have to have three monthly) until we reached 2 years. Well blow me down I could not even make one clear scan. Of course being me and swimming aginst the tide I don’t believe it how can it grow back to 4cm in 8 weeks???? The good news is the lymph nodes are all clear. Off to Brisbane (3 hour plane trip) on Monday for PET scan then back to oncologist the week after.
On a bright note its another beautiful day in paradise. I plan on lounging in the pool and watching the grass grow and visiting my dear old mum.Elm.
you must try not to feel guilty. I’m a mum and I understand that my children (who live 3,999 klms away) all have other committments. From a mums point of view I would rather them looking after their families and coming to me to make memories. Then I am well enough to make memories with them.Trust me…you will never know what to do…you just do it. You sound just like me when this all started for my sister. The guilt is overwhelming…but I think your family will understand if you need to be with your mom. I have a husband and three children and when my sister was at the end…I spent 14 days and nights with her until it was over and didn’t see them at all. You will find the answers as it goes along. Good luck.
Elm,
I am sorry you are dealing with all this, but if it is any consolation we have all been there ourselves.
While easier said, you cannot allow yourself to feel guilty. Your mom knows you love her and understands that you have other commitments that won’t allow you sit vigil. I just finished going through the scrambling part of this process where I felt like I could get one corner nailed down and another came loose. You have to tell your mind to stop. Your mom would not want you to feel guilty and in fact, would tell everyone how wonderful and supportive her children are being to her.
As far as hospice, it is never too early. My dad put it off as long as he could because it was an admission of the end being near. But, those folks are wonderful and early on it is much like a house call from a family member. Then, when you need them, they are already familiar and can absolutely get things done that seem heaven sent at the time.
Please take care of yourself and your family. It is what your mom would want the most,
Jan
Hi,just a note that the thrush is caused by antibiotics and fixed with an antifungal drop or tablet,Hospice/palliative care are really good for advice and symptom management and should not be regarded as “at the end only type of care”.In this country they are often called on to help with tricky symptoms in a variety of illnesses not necessarily terminal. Janet
I had many of your mothers problems over the summer and I was in and out of the hospital as well.
The low salts and potassium (in my case) were caused by dehydration and loose stools. I also had potassium infusions and a prescription for it. I also had an infection which caused severe weakness and tiredness. The problem with the body is that it is so interconnected that if you fall in one place, you can fall in another.
I agree with Marion, if your mom can have the bile drained, it is a good idea. No one should be more uncomfortable than they have to be.
Please do not wrap yourself up in guilt. Nobody asked for this disease to come and challenge us. We all do the best we can given a very bad set of circumstances.
Kris
I am sorry to hear about your Mom and all the issues she has to deal with. This following link might be helpful regarding her mouth sores.
http://www.cancer.net/patient/All+About+Cancer/Treating+Cancer/Managing+Side+Effects/Mouth+Sores+or+Mucositis+-+ASCO+curriculum.
Regarding her infection: has a blood culture been taken in order to determine the bacteria? I don’t quite understand the physicians recommendation therefore, I am hesitant to comment on it but, I do believe your Mom should be made comfortable. The drainage of bile would appear to accomplish at least some of this. The bothersome symptoms your Mom is experiencing would lead me to consider Hospice care also until there is some improvement coming her way. I understand your feelings of guilt but, I wish for you to not let this overtake you. You are doing everything you can do. None of us are prepared for this type of situation and we handle it the best of our abilities. My heart is with you.
Hugs
MarionAlot has happened since I was on here last….
Let me see… my mom had a metal stent put in. Which a few days later they said didn’t work. Her bilirubin at it’s lowest point was a 1.4. It is, as of today, a 28.3. Last Monday they installed a port in her chest. Thursday, a week ago today, she did cisplatin and gemzar. Which, KNOCKED her on her butt. Monday of this week she spiked a high fever so we had to take her to the ER where they told us “yes she has an infection, but we don’t know where.” So they sent us home with antibiotics. She also has thrush in her mouth. Anyone have any suggestions on how to deal with that, other than with an antibiotic? Today she was suppose to have a dose of gemzar, but because all of her blood counts were so low they were unable. Her liver functions are all very high. Her white blood count, platlets, potassium and sodium are all very low. They are limiting her to 1500cc’s of fluid intake a day, gave her potassium in her port today and gave her a RX for some as well. She is also doing the neup (sp) shot for the next 3 days. Does any of this make any since to anyone? It’s all VERY foreign to us. I don’t know weather I am in shock, deeply saddened or mad. The dr. told us that Monday if her blood counts were not up she had 2 options, which hey… it’s optionS, right? She can have a tube placed in her liver to drain the bile, or contact hospice. Right now we are just hoping and praying that her blood work is better.
My sisters and I are also struggling with guilt…. we want to be with her ALL the time, but also have our own families and jobs. When I’m at work all I can think about is being with her. My work is very understanding, but for how long? And I mis my kids and hubby, but that makes me feel guility…. because I will have them for the rest of my life. UGH! Any suggestions on how to deal with all the guilt?
And…. how will we know when we should contact hospice? How will we know when she is “at the end”? UGH! So many unanswered questions…..
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