Updates on me and notes for all of ya
 

Hi Everyone, sorry I havent been able to check in lately, had been sooo tired with all thats happening.

Dad was admitted twice to hospital this week, first for his breathlessness and dehydration, second for his stent procedure. As you all may have known, my dad has oesophaegus cancer stage 4, which makes it hard for food to go down. He has lost more than 20kg since diagnosis in 2007, and 10kg in the past mth alone. He was dehydrated as he couldn't take in water, once he drank, he vomitted. It was weird as he could take solid food (like biscuits) but once he took a sip of water, out everything would come. So we had to send him in on Friday as he had not taken water for 2 days. We spent 6 hours in the ER that day, and 3 hours in the ward, before leaving at ard midnight to rest. Drs could only put him on a drip, hydrate him, then send him home till his stent procedure scheduled on wed. He was admitted on tuesday, and right after the stent procedure, he vomitted the whole day. Till today, he's still vomitting. Pains me to see him going through all these..

As for myself, I'm glad to say that my best friend whisked me away for a short 2D2N trip to a nearby island, where we simply relaxed, had spa and messages on Sunday. Lol. ITs the best birthday present I've got this year. Thankfully dad was discharged before we left, and we made it back on my birthday, the day dad was admitted to hospital for the stent.

Was also busy the past 3 days helping to appeal for blood donors for my friend's close friends, one of whom has leukaemia (the poor guy's only in his 20s), while the other lady (35 yrs old) was in a coma after an op to remove a blood clot. Some people responded, while some were skeptical. Thankfully we managed to find enough donors for the boy while the lady who was in a coma, sad to say, doctors found a 2nd blood clot yesterday afternoon, her condition deteriorated, and we received news today that she has been declared brain dead. Everyday we have people fighting for their lives, and this makes me even more determined not to let ALS rule my life. Its just something that I have, but it doesnt have me. =)

My condition however, hasn't been too good. Have to walk with a cane now, and its getting more difficult sometimes. Wake up feeling like I haven't slept, and not to mention the fascics and cramps that come with it. Am already on the maximum dosage for clonazepam for the cramps and pain, but it only lessens the pain, doesn't stop the cramps. Muscles have turned to "vibrating" from "twitching" and its really uncomfortable. Its like my legs don't ever rest. My left eye muscle has also been jumping for hours each day, making it difficult to read sometimes. My wrist is becoming smaller now, and its becoming straighter, like the meat's disappearing. Its extremely obvious, and friends have been commenting that I look like a stick. Lol. My tongue has this nerve that almost always cramps up, making my tongue stick to the right, elevated. Weird.

Its funny how I still have the strength, but yet sometimes, I feel floppy. I hate wearing elastic pants now. Lol. Its just so difficult getting them on, somehow. Just today, during dinner, I felt so breathless I didn't know why. Was really hungry but yet chest was so heavy that I just couldn't eat. Does anyone know what could be wrong? It happened yesterday evening as well, and I felt sooo giddy I had to sit down.

I still miss everyone, and am reading the posts to see what everyone has been up to. However I may have missed some, and forgive me if I'm asking again here.

Rach: How's the dx process going? Did they give you a dx? Are they treating u well? I'm so glad to hear from u on fb! Lol.

Erin: I'm glad the IVIG's working for you. My neuro's also suggesting it, though am not sure if I should take it. Hope the nurses treat u nice, and that your symptoms start going away!!!! HAve they confirmed the fibro dx? Is there anythng they can give u to make it better?

Pat: How are you now after the visit to the hospital? Is everthing under control? What happened for it to occur suddenly?

Shar: Thanks for the update!!!! Its so good to hear from u again.

Simon: How have u been? I can't seeem to catch ur posts. Lol.. Are u around?

Joanmarie: How are you now? Better after taking the meds?

Rezmommy: How are the cramps? BetteR???

Nicky: Have u started radiation? Is it tough on you? Sending u lots of love and strength from here!

scarpettafan and bluesky: Sorry to hear of your dx... But stay positive, and I'm sure things will start looking up soon! Most impt thing is think of positive thoughts!

Annie: how are u? Heard that u've been feeling tired recently, why is this so? Are you better nowwW? *hugssss*

The new people: Hello! Welcome! This is a great place, and like me, you'll grow to love these people so much. Lol. They're in my thoughts every single day.

I miss all of you badly, and I hate not being able to keep up with everything. I'm sorry I can't type more, hope that this finds all of you well!!!

Connie,
I am still around! Just hanging in there and living day to day, some good and some not as good! Hope all is well with you.
Hugs to you,
Simon

hi Connie
 

So glad to hear from you. Im pleased you had a good birthday after all you have been going through. Sending lots of love to both you and your dad xxxx

Still no diagnosis! I heard from London last week and they said their waiting list is several months long and they would contact me as soon as they had some appointments free. So how long is a piece of string I guess.

I haven't heard from France so I will email them again on Monday. I hope they haven't forgotten me.

Health wise not good. My parents came to see me today and the first thing my mum said was by the colour of you, you should be in bed. Yes mum I should have been! But I wasn't. Just seem to go from bad to worse. But Im hanging on in there.

Is there anything else they can try drug wise to ease the pain and muscle cramps? Im so sorry you are having to use a cane now. Good for you helping with the blood donor drive. Im so sorry to hear about that lady though- shes the same age as me.

I do exactly what you do, I hear stories about other people who are worse off than me and just fight! At the moment though Im having a wobble LOL.

Lovely to hear from you.

Love
Rach xx

Connie, you are such an inspiration!! My cousin has ALS and has chosen to shut down and surround herself with negativity. It's sad that she decided early on to let ALS define her. I admire your spirit very much.

Happy Birthday!! (belated). I'm so glad you got to enjoy it with your island retreat. Sounds like it was delightful.

Sorry to hear about your Dad's trouble. Hopefully he is more comfortable now.

Take care - - love reading your posts!
Sue

Hey Connie,

Always good to hear from you. How nice you got to spend your birthday on an island...good for you! Sorry to hear about your Dad and hope he's doing better. You sure have been keeping busy...I love your generous spirit and positive attitude. I'm feeling much better and the doctors are trying to find out what is going on. I sure don't ever want to go through that scare again!:eek: MG has flared up because of it, but the mestinon and rest has it under control. I'm so sorry for all you are going through and I hope you get some relief soon. You take good care of yourself and hope to hear from you again soon.;)

Big Hugs,
Pat

Hey Connie,

It's so good to hear from you!

I'm glad that you had such a great b-day! Going to an island sounds fantabulous!

I'm so sorry about your dad...It's so hard when there's sickness everywhere you look...You and I have a lot in common...My dad is very sick too, but not with cancer. But his condition is such that he is in a nursing home because he has seizures regularly and my mom cannot take care of him due to sickness as well. For a year or so, a few years back, I was taking care of him, but my health started to deteriorate and I couldn't do it. I feel a lot of guilt, but I feel better knowing that he is safe with 24-hour care. He lives close-by, so we visit him often and bring him over often. Illness is hard.

It's so strange what's happening these days. We also have a friend who has cancer. He is my age; 26. He has testicular cancer which has spread to almost all of his lymph nodes. He's going through chemo., radiation.

You said that you're feeling very tired in the mornings. I can relate. I have a lot of chest weakness, and I think that it causes a bit of apnea. I'm actually thinking of getting a bi-pap. Are you using one of these? They help A LOT, from what I've heard! You will feel less tired in the mornings and if you happen to find that you get headaches in the mornings too, this will get rid of those.

As for the muscle cramps/twitching, I get those too mainly in my hands and chest a bit. Have you ever looked into baclofen? I heard that it's very good for spasticity. Also, make sure that you're getting your electrolytes. Drinking a gatorade once a day might help a bit. I get a lot of cramping/spasming in my feet also and I find that a banana helps.

Try to eat lots of fat! I know that I say that all the time, but there's something about it that seems to help the nerves, talking from experience and what I've read. Coconut fat is good, as well as milk, butter and even animal fat. It'll keep your weight up and it seems that it slows the progression.

As for me, it turns out I don't need radiation, thank God! My oncologist said that my tumour was completely encapsulated, so I don't need. She also said that it was smaller than what my surgeon said. I'm relieved about that.

I'm still having problems with my hands, with stiffness/weakness and I've been having some heart issues for a long time, which have lately, become a bit worse, mainly in the form of 'skipping' 'too many' heart beats. I feel pretty confident that I have this other condition, which is genetic. I'm going to see my neurologist at the end of the month, and I'm going to asked to be tested for it. This other condition explains everything I've been experiencing for the last many years, including the thymoma to some degree. My mom has similar symptoms as do many others in the family. Mine are worse, which makes sense as it tends to get worse per generation.

I completely agree with you. It sucks to be sick, but so many others are sick too. We only see from our owns eyes, but we all share this 'individual' experience which is our commonality. In one, there are many, and many, there is one. It doesn't matter what anyone's going through; we've all felt vulnerable, scared, weak, sick, happy, sad- these feelings connect us and we can help eachother with them!:)

Talk to you soon, girl!:)
Nicky

Connie, I'm a bit overwhelmed today and about all I can say is that I'm sorry. Sometimes I have a hard time dealing with a lot of health issues because I have so much going on myself. And my dog just had a tooth abscess, teeth pulled and I'm trying to keep his pancreatitis from flaring due to all the drugs.

What you are going through is so hard. And you still have the strength and faith to help others. Truly amazing.

I wish I could give you a big hug, sit down and watch a good movie with you just to hear you laugh.

:hug:
Annie

Hi Connie!
 

Hi Connie,

so good to hear from you. I'm glad you had a good birthday, and got away for a couple of days.
Sorry to hear you Dads not been to good.
You really are an inspiration, all you are going through at the moment, and you still manage to sit and write a long post.
Thinking of you lots,
take care
Kate

Hi Connie:
 

It's so wonderful to hear from you! It's really great that you were able to go to a spa, especially on an island, for your birthday - and that you have a good friend to take you there. I think it's so important to treat yourself to some relaxing and fun times as much as possible, even in spite of everything else.

I am so sorry to hear about your dad. My brother had the same type of cancer. It's so hard when you're fighting your own battles with illness and also have loved ones going through the same battles that you want to be there for and support. I admire your courage and compassion for others. You are a role model for us all.

I'm thinking of and praying for you and your dad. I hope the week ahead brings you comfort and peace.

Hi Connie
I came on board while you were absent from the boards but it's good to meet you. Sorry to hear about your family illness. It was good that you did get some relaxation from everything. I know that definitely helped you to keep on keepin' on.

Keeping you and your family in my prayers.:Heart:

JJ

:hug: Connie :hug:

What a post, full of saddness and happiness, I hope your dad gets to feeling better and as for you.. well I am jealous you had a spa treatment! I guess this past week has been crazy for a lot of us but thank goodness for this site and the support from everyone here, I don't know what I would do without you all.

Hospital again!
 

Hey everyone, thanks for all the encouraging posts. I really need that now.

Dad's been admitted today again, and Doc spent a long time with us discussing options. He's considered to be in the final stages of his stage 4 cancer now, with holes appearing in his oesophaegus, causing food to leak through, and going into other parts of the body. causing infections. He won't be able to eat food for the time being due to the infections. He still has a high fever.. There's also fluids in his stomach which is very bloated (as shown from the CT Scans), due to some blockage between the stomach and intestines. So those liquids are all undigested and his stomach is filling up. Tmr they'll consult the surgeon to see if a food pipe can be inserted through the oesophaegus, pass the tumour, into the stomach to drain out the dirty fluids, and I'm really praying they get to do that. Cos thats the best option given so far. Else dad may never be able to eat again, not even through pipes. The only solution would be to put fluids through his veins, which doc said is expensive to do at home. Hospices and last wishes were also brought up, and it was an extremely draining session as I guess we didnt quite expect it to happen this way.

I'll have to be at the hospital at 9am tmr (my time) to meet his doctors, and I'm really praying for the strength to pulll through all these. I'm also scheduled for my EMG on Thursday at 930am, for my 2nd opinion done locally. It'll sort of let me know at what stage my nerves are at I guess. Neuro said its to see the progression. Everything's coming on so fast, I think I'm quite tired. Really need to pull through this week, praying hard that they'll b able to put the food pipe in for Dad. Else it will be just watching him waste away... Chemo's also not an option now as he is extremely prone to infections due to the holes in his oesophaegus.

I duno where to find the strength to get through all these, though I know I will. I'm just praying that I'll find enough for the whole family. Its tough making all these choices, even tougher when I know my mum's not prepared to let go of my Dad yet. I hate to think what effect my diagnosis will have on my family, I don't think I want them in my neuro's room on thursday.

Connie :hug:

I am so sorry to hear everything that is going on with you and your father. I will keep both you and your family in my prayers every day. Life is so difficult at times but we have to continue to put our trust in God to carry us through the difficult days that lie ahead. I know that is so hard to do because I myself have trouble doing it too. Just know that we are all here for you.

Love and Hugs, :hug:

Shari

Connie,

I'm sending a big, warm cyber hug your way:hug:

This is a lot to deal with all at the same time for anyone...I know that you will make it through, though, as difficult as it is...But I know that the heartache and stress must be a lot...

I hope and pray that your dad can get the feeding tube...Are they able to get rid of the blockage and then insert it directly into his stomach? I always thought that those tubes went into the stomach for some reason, not the esophagus.

I know that you want to be strong for your family, but I hope that you have a good cry now and then to relieve the stress...Comfort yourself whenever you can, and know that God's grace has no boundaries...He's with you all the time, and everything will work out as it's supposed to.

We're all with you too, as far apart as we are, thinking about you and praying about you.:hug:

Thanks!
 

Thanks Shari and Nicky and everyone else..

Just got back from a day at the hospital with dad again, and went in real early today to speak to the doctors. My dad's doc is really nice, so I thank God for her everyday. The surgeon came to see my dad, and said that a feeding tube / peg is not possible, as the blockage is between the stomach and the intestines (think I got it wrong earlier Nicky). So all the undigested foods/liquids accumulating inside his stomach (which was like 3/4 full when we saw the scans). The food pipe has to go through the oesophaegus to go into the stomach, which is tough too, as my dad's tumour is in his oesophaegus. This morning they inserted this small tube through the nose, to do the suction, to suck out the liquids from the stomach, and it sucked out the ensure he drank yesterday afternoon. -.- The only way it seems, is to go for surgery to remove the blockage, which is likely a new tumour (probably a lymph node). We'll prob know the directions tomorrow morning, after the docs have a discussion and review the scans this evening.

As my dad's 70 yrs old, theres gonna be lots of things to think about for the surgery. Surgeon said some people never walk out of the hospital after that. He was very truthful, which I appreciated. Dad will be considerably weakened by the surgery, but both my dad's doc and the surgeon feels that thats prob the only way to allow foods in again. Otherwise, even with food tube or peg, the foods will still accumulate in his stomach, and remain undigested, not to mention vomitting.

I'm really just praying for a miracle. I know I'm not leaning on my own strength anymore. I cant do it alone, but I know with God in me, with me, I'll be able to do so much more with His strength and love. Thanks for all the positive thoughts and love, I really wish I had more good news to share. Shall catch a nap now, then head back to the hospital an hour later.

Perhaps its good too. So that on Thu, my neuro can see me in my tired state... Lol. Am really just praying for peace in my mum and dad's heart. That they'll be able to accept it. :grouphug: Thanks for everything babes and hunks!

Hi Connie,

I am thinking of you and your family:hug::hug:
You are an incredibly strong person, I wish I had the right words at the moment.
Just know Iam thinking of you at this time:hug:

take care
Kate

Hi Connie!
 

Hi Sweetie,

I am so sorry for what your Dad and the family is going through. It is so difficult when a loved one is so ill. You take good care of yourself too. I will keep you all in my thoughts & prayers.;)

Big Hugs,
Pat

Just read your post - - I am so sorry you are going through all this at once. There is nothing to say except that you and your family are in our thoughts and prayers.
Sue

Connie, praying for you and your family. You are an amazing woman and the strength is there especially when you need it most. Thinking of you often. Take care ~ Melanie

Heyyyy!
 

Hi Kate, Erin, Pat, Sue, Melanie and Everyone!!!

Thanks so much for all the love and encouragement and prayers. The prayers worked! At least they seem to be working now... Lol...

Just came back from the hospital, stayed the whole day there as dad's conditon was a little unstable. So kept watch by his bedside.

Things went like a rollercoster since Wednesday. Met my dad's doctors and surgeon, both of which said that despite the teleconference they had on tues evening with other doctors, none could tell what the blockage was. So they had they to rescan him on thurs morning, with some special scans.

They did so, and on Friday, we were told they still couldn't see anything! Lol. It was part of my prayers answered. So the surgery was not critical anymore, and they tried letting him take in liquid foods through the food pipe that was inserted earlier. (funny how u can draw out and put in through the same tube =X) They did bout 5 feeds that day on friday, and we thought all went well as dad still did not vomit.

However, on Sat morning when we called him, he said he vomitted at 11pm after we left. -.- So he was told to be NBM Nil By Mouth again (but actually is nil by tube too). Went to see him on Sat morning (at bout 10+ am) and and around 1pm, he puked again. This time round, the liquids had a foul smelling smell, and was black -.-. We thought it was the herbs he took 2 weeks ago, as it was black, but was later told its blood. So apparently, his intestines arent working well, theres an infection and is bleeding, which should be the reason why everythings accumulating in the stomach. The doc admitted that there may still be a slim chance that all the scans missed the blockage (u know machines always have this 0.01 chance at least of missing someting), but for now it should be that his intestines or guts are not moving to digest the food. =/

So I got the doctor to put him on suction again (to suck out everything in his tummy as vomitting aggravates the holes in his oesophaegus and also his condition), and they sucked out approx 200ml of black gooey liquid. Theres more though, and suction is gonna be ongoing.

Initially we thought he could be discharged on Sun or Mon, but now it seems until they solve the mystery of undigested food, hes going to be in hospital for weeks. Doc did mention that if nothing works, they're gonna to have to operate and see what exactly is happenin in there. I really hope that doesnt happen though.

My emg on the other hand, turned out pretty controversial. Lots of polyfasics, lots of giant motor units, and some other terms which I forgot. The new neuro said it shdnt be ALS or MND, but the other neuro insisted its MND, PLS at least. The former said I need to learn to relax my muscles, which probably caused my hyperreflexes and also my giant motor units and spasticity. I then asked how do I relax muscles? He said.. ooh. Relax ur mind. I simply ignored him. I didn't know that one can change emg results by being erm.. not relaxed? So I left it up to them to fight it out and let me know. I simply cant be bothered at this point. All I know is that theres something seriously wrong. Locally, one orthopaedic consultant, one neurosurgeon/neurologist has confirmed that its MND, but one neurologists says its not MND, just stiff muscles caused by my MIND. Overseas, I have two neurologists confirming that its MND. Sigh. Why do they study the same thing neurology, but come up with different diagnosis!!!! It confuses the patient. Anyway I cant be bothered, so shall stick to my orginial neuro and listen to what he says after he finishes arguing with the new neuro. Lol...

I'm glad I got the strength to pull through, thanks to your prayers and God. I got thru without losing my sanity. Lol. Had few headaches this week, cramps, aches, but other than that, I'm happy to announce, I am still SANE!!!

Dad's doctor requested to see the whole family at 830am on Monday morning, I don't know what kind of news she's gonna break to us now. -.o all these doctors requesting to meet us makes me feel uneasy...

I miss all of u. Sorry I cant keep up with the posts. Spending ev day in hospital nowwww. :hug: But mail me individually if u have something u want me to seee ok!!!! :grouphug:

Hi Connie
 

So sorry that your dad is having to go through all of this. Im sending positive thoughts your way.

What a nightmare for you with the diagnosis! Doesn't fill you with confidence does it. Im so sorry that you have this to battle on top of everything else.

Relax your muscles! Best advice Ive heard yet! How long was he at medical school to come out with that little gem! I a firm believer in only telling the patient what you know, not what you think you know or just making something up because you dont know what to say.

Hang on in there Connie Im rooting for you!

Lots of love and Hugs
Rach

Hey Connie,

I'm so sorry you are going through all this. I hope your Dad's doing better today and the news is good on Monday. I will keep you all in my thoughts & prayers. Just keep hanging in there kiddo...Oh yeah, and 'relax'!;)

Big Hugs,
Pat

Hi Connie!
 

Hi Connie,:hug:

Still thinking of you your Dad and the rest of your family and all you are going through at the moment. I hope you get some answers on Monday.

Ah dear Doctors can be frustrating can't they. When I first approached my gp regarding my muscle pain, he put it down to lack of excercise!!! I just nodded feebly and thought well if thats what you want to think, then go for it, I know its not. They don't seem to remember that we know our bodies soooo much better than they do.
I hope your neuro sorts it all out for you.
take care, thinking of you
Kate:hug:

Hey Rach, Erin, Pat and Kate, thanks so much for keeping up with all the news. Just got back from the docs appointment, and yeah, not exactly good news again. My dad's doctor has gotten my dad a palliative care team and met them today for the first time. Just googled and found out that palliative care's brought in for people with "life limiting illnesses".

Docs not very optimistic about Dad's condition. The update was that his gut is the culprit of it all, its not moving. Its very slow, causing all the build-up in the stomach. Sort of to say, its paralyzed. Now they're gonna do a endoscopy to see if there really isn't any blockage, and to insert the food tube directly into the intestines instead of leaving it at the stomach/gut area. So hopefully after this, Dad can feed through the tube. And hopefully, a miracle will occur and his stomach muscles start moving again. Then they can remove the tube and let him feed normally. If after weeks to 2mths, his stomach muscles still do not move, then we shall have a peg put in directly to his intestines.

However, all these are in the optimistic way I guess. As he has had an episode of intestinal bleeding before, docs have warned that if bleeding occurs again, it could be unstoppable and we could lose him immediately. Its hard to say, he can have a few days to weeks, to months. It all depends on his progression over the next few days, how much he weakens by day. I guess one can never prepare enough when losing a loved one, and I don't know what I'll do when that time comes.

Thanks for all the prayers, thanks for listening everyone, to my rants. It helps a lot.. Gotta run to hospital now. Miss u guys. Thank you all u sweeties! :grouphug:

Hi Connie
 

I admire your strength and determinantion. I dont know If I would be as remotely brave as you faced with the situation you are having to deal with.

Words seem so useless to express the sincerity of the sentence "Im thinking of you and your dad and the rest of your family". I wish I could just see you and put my arms around you.

You look after yourself.
Love
Rach:hug:

Connie- -

You are NOT ranting!! Dealing with the issues that you are dealing with are the most difficult things a daughter will EVER do for a parent. (I know, I've been there.)

And yet, somehow we find a way to keep it together while we are in the midst of the crisis. I would like to express a concern for YOU, though. While going through this with your Dad, you are mustering ALL the energy you have. Your determination and adrenaline will get you through this - however long it is and whatever the outcome may be.

But, be very careful of your own health. Caregivers / providers are always at great risk when the crisis is over....and you, dear Connie, are too precious to have a health crisis of your very own!!

Thoughts and prayers will be with you and your family,
Sue

Connie
 

Hey Sweetie,

I'm so sorry the news is not good. I've been through this as well. Please take good care of yourself. You need to remember to eat and rest. We all love and miss you. I am keeping you all in my thoughts & prayers.;)

Big Hugs,
Pat

Hi Connie,
I will be lifting your dad up in my prayers tonight.

God Bless
Jujuan

Hi Connie:

I'm thinking of you and praying for you and your family tonight for rest, comfort and strength. My husband and I are praying for your Dad that he will stabilize and be able to eat again. I have been through what you are going through now - please try to find time to take care of yourself at least some - to eat and get periods of rest in the day as much as you can.

There are many people here thinking of you and praying for you.

Take care,

Hi Connie,

still thinking of you all, sending up prayers for you.

Take care
Kate

Hi Connie,

I'm thinking about you and your family at this time and praying for better health.:hug:

wow
 

Everytime I login, I'm amazed at the influx of encouragement and short messages I get from u all. I'm overwhelmed, and u guys are really a source of support for me.

Thanks Rach, Sue, Pat, Jujuan, Shar, Kate and Nicky! The prayers are workingg.. I think. Lol..

Currently Dad's on Maxolon and morphine, also on oxygen as his oxygen stats dropped to 90. They're hoping that the maxolon helps his intestines to move, and also the side effects of morphine will move it. I'm really not sure how all these meds work, but seeing dad weaken by the day is pretty painful and hard to bear. I try not to think of it all, but just feel like giving him a great big hug. But I'll prob hurt him if I do that..

The good thing is that the Maxolon and morphine seems to be working, they're drawing lesser stuffs out from his intestines now. So for trial, he's allowed 250ml of water a day. Lol. So its basically a sip every now and then to see if he can digest it. I hope it works out.

The side effects of those drugs are that dad's drowsy always, so cant really talk to him. I miss him, miss the bubbly him.. wish that he could tallk to me, but I guess I'll be happy as long as there are still options for him. If only the options are easier to choose.

Now its on a day by day basis, symptom treatment they say, rather than treat the cancer. I really hope he pulls through and returns home.

I made a silly prayer the other day, praying that I really don't mind givin up my life if it could save my dad. My mum probably cant do without him, but can do without me. The pain is quite different, but I know its a silly prayer. but I couldnt help making it. Lol.

I am hoping that we will not need to meet the doctors, for everymeeting seems to bring worse news than the previous ones. Lol. I'll rather everything remains status quo. Or gets better.


Its getting harder to walk now, I wobble with my stick sometimes. I struggle with my bag. At the end of the day, my limbs ache like crazy. This forum is source of comfort for me.. I'm sorry if I've missed out on the happenings here, I promise I'll keep myself sane. Lol..

Really really thank you all for listening and for the encouraging words. :grouphug:

Connie, I'm glad things are getting better - hope they continue to do so. You are such a trooper, dealing with your own health issues, your Dad's and those of others. I know that when my Dad was sick, it tore me apart. I hope he gets completely better.

Please read this. I think everyone should read prescribing info, even though it's hard to get through.

http://www.webmd.com/drugs/drug-5686...0&pagenumber=5

The other thing Morphine does, which is really bad for people with MG, is to make muscles weaker. Pain killers also slow peristalsis (the way food gets moved through the intestines) way down. I have to wonder if the Morphine is to blame for the drop in O2 stats. Morphine caused me to have moderately severe breathing and stopped up my intestines. Those protein fruit drinks they have in the hospital is what worked to get things moving.

I've made those "deals" too. I rather doubt anyone, especially your Mom, would do okay without you!!!! Geez. Every single person on earth is important. Look what you've done for that ALS/MG guy's Dad. No one deserves to suffer or die and it's so damn hard to deal with it, especially when it's happening to a parent.

I hope you are feeling okay, besides being so morose! ;) Seriously though, lots of thoughts coming your way and I hope that all of you will be better.

:hug:
Annie

Connie

Hope things continue to progress well for ya'll. Don't think anything about your prayer regarding your life being required so that your dad could live. Actually that comes straight from the heart. God's word says "Greater love hath no man than to lay down his life for another."

Look to God, He is your source of strength and comfort. Storms rage within our lives and everyone experiences it. Sometimes we don't understand God's will, but we know that His ways are better than ours. Keep looking to Him, He will never leave nor forsake us.

I want to share this comparison with you. We do have times when we are on the mountain and sometimes in the valley. Mountains usually don't grow anything on top, most of the time it is mainly rock. Valleys always flourish with lots of new growth and life. We we are on the mountains, we don't grow much but when we experience valley's...times when we struggle....we grow just like new growth, we come out on the other side a better person.
May you find encouragement during this time.

I will be sure to keep remembering you in my prayers.

:hug:
Jujuan

Connie,

It makes me so sad to hear about what your dad and what you are going through. When I read your posts about your dad, it reminds me so much of what my late husband (who died of cancer) went through. It just seemd like it was one thing after another. It's hard to see so much suffering. Unbearable, really, when it's someone you love. At least with chemo I felt like maybe the suffering would be worth it in the end. I understand too, the shock of hospice. It feels so much like giving up, like the first stage of a really scary journey. I remember the nurses telling me that people do go off hospice sometimes, although in my husband's case there wasn't any real chance of that. It did turn out to be the best thing we could have done though. Your dad will get so much attention and help from hospice and they really are experts at making patients comfortable. And the hospice nurses are the kindest, most compassionate people on the planet.

I hope this doesn't sound insensitive, but I laughed when I read about the neuro who told you it was all in your mind and you should just relax. How ridiculous is that?!?

I'm so sorry you're going through so much. I'll bet you never thought you'd be where you are. It's not fun and there's no easy way to get through this, is there? I completely understand your prayer. I've said lots of crazy prayers. Now I just pray - if this is how it's going to be, then okay. Just please help me to accept this and take the misery and fear away. Just let me feel some comfort.

I'm not a particularly religious person, but I sometimes do say that prayer.

Of course I'm not comparing my situation to yours, you have many more health challenges than I do. But I do understand the feeling of everything falling apart and watching someone you love suffer so much.

I don't post as much as I should, but I want you to know that I follow your posts and you are always in my thoughts.

Ally

Hi Connie, :hug:

thanks for the update.
I hope your Dad's able to keep the water down.
Sorry to hear you are a bit wobbly and in pain,
thinking of you still
take care of yourself
Kate:hug:

Connie,
I am praying for you and your family. Keep the faith! We are here for you!
Big Hugs to You!
Simon