Hi everyone...Well the good news is short my AF seems to have just about gone but not quite. The gastro- paresis has settled some but its not going away just yet and now .....
I am in a spot so to speak....Went for my check up with the lung nodule at Monash Med Centre in Clayton ...its our biggest Hospital in Victoria Aust. the nodule is still 8 mm but I have developed a second 1 that's 3 mm in just over 3 months.... and the kicker.... I have a mass in my pancreas its rather largish and they are saying most suspicious of adenocarcinoma....I was expecting good stuff and came out shattered....I am trying to be positive but am numb with anxiety....too much has happened over the last 5 months....
The Dr at Monash put an urgent request for MRI which has been confirmed for Monday morning at 10 am est....and also referral to upper GI surgeons so looks like I'm in for a few biopsy and surgery very soon I fear....its scarring me because I know too much....My GP got wind this afternoon and wants to see me at 2.45pm so of there in a minute...
I am grateful that the AF ablation was done or I would be non the wiser and my life expectancy might have been jeopardised to 3-12 months but am hoping upon hope that its still early enough for them to operate and have chemo or radiotherapy to knock it over for a while....I have read there is no cure just time. So all in all a bummer of a Christmas present with a glimmer of hope perhaps.... I am hoping too I am lucky enough to get another 5 years according to the research.... Its just not fair....and I know that sounds selfish but am grieving and a bit in denial I think......Anyway my lovely comrades in arms and AF buddies will keep you posted and if I disappear for a while things are happening that I have no control over. LOts of love and Good wishes for the Christmas fest ivies and may the New Year be bright and healthy for everyone...
XX God Bless ...... Jo
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Misseyj55
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Hi, Jo. Thank you for sharing this worry with us. I do hope you've have a good visit with your GP and that it has lifted you a bit. I think any bad news is often worst when you first get it but once you know things aren't good you can start to fight back and chalk up some successes. May you find that treatment will be giving you those five years and maybe more.
Hm not a good visit ......my GP is gob smacked as well..... So I am in limbo....MRI is the only way I will know if it is so bad as they think.....I mentioned survival rates and I got a blank stare and we can be positive....You need to rest and be quiet with yourself....don't get stressed and sleep well....I can honestly say 3/4 isn't happening and I now have some sleeping tablets which I will be taking as I lay awake for hours at the moment....and that cant be good for me either...Oh shit I just wanted to grow old peacefully .....lol that seems far fetched now..... feeling cheated .....
Thanks for your kind words will be here some more when need to chat
Sorry your GP wasn't uplifting. Yes, sleeping well, I'm sure, will be helpful, but rest and being quiet ... well, I'd do nice, satisfying things. You have opportunities ahead that are denied to the unfortunates who come to a sudden accidental end, and an excuse to be self indulgent so have the nicest evening you can, sleep well and make tomorrow a good day. All the best!
I had the same thoughts when I was diagnosed with prostate cancer nearly four years ago so am with you all the way there. Don't give up and fight like hell.
Jo, this is a dreadful time for you and you really do have my sympathy.
25 years ago I was told that I was going to die because the cancer on my arm had spread. I was in total panic because my 2 boys were so young. Aggressive radiotherapy and visits to a Cancer Help Clinic followed. An anti-cancer diet wasn't much fun - I still can't face brown rice!
One thing I realised is that it's dreadfully hard for your loved-ones. They are used to helping but suddenly there is nothing that they can do but stand by helplessly. You, meantime, are in the sausage machine of treatment. You have to go with the flow because there is no alternative.
You need to try to stay calm. Seek out alternative therapies, as I did. Try to boost your immune system with a change of diet so that your body doesn't have to cope with chemical additives.
Post us collectively or privately if you need to let off steam.
Thanks Jenny You are so brave, I have yet to find a diet for this am looking but have been following gastroparesis diet and not sure how the changes will effect that so bit stuck at moment... definitely not having any additives though. ...any thoughts about boosting immune system gladly received...
I think that it's important to eat the food that you enjoy. Make your diet as varied as possible. Take a good quality vitamin/mineral tablet daily. Add extra Vit C ( I take 1000daily ) Zinc and selenium are important.
Avoid chemicals. Weigh up choice eg if it's a choice between cola or water then opt for the water.
Re fruit and the all important 5 per day. Do not have 5 apples from the same batch because if they have been sprayed then you will get 5 doses of spray. Keep it varied.
I think that you can become very miserable if you are not flexible. Above all, do things that give you pleasure. If you want to eat 3 cream cakes, then go ahead and eat them.
So sorry to learn of your diagnosis, I think anyone would feel cheated at such a prognosis. As you say, more will be known after the MRI so it is that time of not knowing which is going to be so hard, especially at this time of year.
May I suggest writing a journal? Just dump all of your thoughts as they come to you. It can help as when we just carry them in our minds they can just get stuck on a repeating cycle.
I don't know how it works in Aus but what I learned was that what a GP says and what an Encologist says can differ and reading up and knowing the stats may help you prepare for whatever is coming but it won't tell you how you will do.
My husband also recently came through prostrate cancer but that has a good treatment record Bob, my close friend has just come through Esophagus cancer, survival at 1 year is less than 30%. She is now +2 years, doesn't expect to survive for more than 5, has recovered her fitness and completely changed her priorities in her life and enjoying every moment,
It is a huge shock and a really bum Christmas present. I do hope posting here will help, we will do our best to support you.
Thankyou CDreamer its a shock alright, Im in the why is this happening thing.... hubby and I went and had a lay down this afternoon we don't sleep in the same room now because we both keep each other awake... but ended up having a good cry together and decided perhaps sometimes we should be in the same room for support for each other.... priorities for our time together is important more so...so little changes and time well spent...
thankyou for your support, journal is a good idea I think....
I'm sure I will do lots more posting as the support is so helpful on this forum to each other...
My prayers and thoughts are with you. 2 years ago it was discovered I had a large ovarian tumour. I was given a dedicated cancer nurse to support me, and I thought the worst would happen. I was scared and felt cheated too. I was fast tracked for an operation. 3 weeks after the removal of the tumour I learned that it was benign!! So please don`t give up hope.
thankyou Langara if they tell me something like that I will have won my life's worth in health I reckon would be lovely .....
Sending hugs Jo, this will have come as a terrible shock I'm sure - I just hope that the prognosis is a lot better than you fear, and that with treatment you have plenty of years left ahead of you. Take care, and let us know how you go.
Thankyou Lis yes I hope its not as bad my head tells me to hang in there my heart is doing the aching thing. Will be here, as I believe you are all so wonderfully supportive and helpful.
So sorry to hear and hope it is not as bad as you fear.
I am fortunate not to speak from personal experience except at second hand but have to say I hate that expression 'battle with cancer'. OK, if battling is your thing go for it, but if not spend your time and energy doing what matters most to you, then whatever the outcome you won't have regrets.
Thankyou Buttafly your right absolutely right I have no battle in me but I can accept and try to make the most out of the time unknown I have....its just a void that is grieving me the most...
at the moment...shock I think.....
and we are having a quiet Xmas as the others have made plans. our youngest is home with us he's in his 30's and is strong so will be there for us both....
So sorry to hear about this setback, Jo. I can't say anything that hasn't been said already, just hope that it helps to know that we are all thinking of you, all over the world. Wishing you all the best, from across the ocean in Cape Town.
Pdotg many thanks for your kind thought and words from far across the ocean.....Cape Town wow.... its heart felt to think I can chat with you all openly, and be helped so much with well wishes and sound support ....thankyou.....
Jo I'm sorry to hear your news- I think new developments are happening all the time so do keep strong and look after yourself as much as possible so you can benefit from any new advances that are available
Oh Jo, what a shock for you! I can understand how you must be feeling now. Please let us know what your doctor says this afternoon and how you get on next week. Big hug.
Hi Jean my doctor is shocked by the report....she has only recently taken my case on in same clinic and says I have slipped through the cracks....symptoms have been ignored its on my file time and again that I complained of upper stomach pain and low blood sugars....I am now in the lap of the gods....we will wait for MRI result and then ....thanks for the big hugs and yes will keep in touch ....Have a great Christmas xx Jo
So sorry to hear of your tough luck Jo. Really hope you get some good news soon and that there is a silver lining at the other end of the current clouds. Thinking of you and wishing you well.
Thankyou Suzie I love your comment...it is just that .....esp.. right now....2014 has been a real bummer...with so many downs and a few bright ups at least the AF ablation has worked....to a point...thank heavens....I thought.... silly me I would be ok.....Hm .....you just never know what's around the corner.... I am trying to stay positive....Hope you have a wonderful Christmas with your family xx Jo
Thankyou Jan R ((((Hugs )))) accepted and I so appreciate your support am overwhelmed by everyone's encouragement here it's uplifting for me. Have a wonderful Christmas . xx Jo
I came across a little book of poetry this morning and immediately thought of you. "100 poems to see you through," specially selected for those overwhelmed by illness or other life/soul threatening events. It's an anthology collated by Daisy Goodwin. The poems catch all the swings and rages of battered emotions and the fear and loneliness of keeping going. It has humour too, for when you can tolerate humour.
If you can't get your hands on it, but would like to, let me know. I can send a copy.
Thankyou I would love a copy of the poems it would give me some solace I thing....I will try to get it from our local library and see if its there if not I would gladly send you the money for it thank you I appreciate your offer . Have a wonderful Xmas and bright New Year... xx Jo
Hi Jo, what can I say that has not already been said. Stay positive, try and have a good Christmas with all the family. In the meantime I am sending loads of angels with healing and prayers to support you. Angel blessings to you. I will be thinking of you.
What rotten luck for you, this must have knocked you sideways. I do so hope and pray that you can now find some positivity in all this and that the treatment can keep it all under control. They are coming up with new treatments at an alarming rate these days so hopefully you may be able to find some comfort in that. Good wishes.
Sending prayers and keeping you in my thoughts in the U.K. Take the knowledge that you have the support of so many people and may it give you strength.
Sending prayers for you and your family. Please continue to update here when you can - venting, thinking out loud, writing etc to help get some of the anxiety out may help. I'm in Missouri, USA so know you are thought of and prayed for at all hours of the day.
Hi everyone there are so many people here that are so very caring and supportive....please accept my heartfelt thanks. each and everyone of you have given me encouragement to look for that glimmer of hope....I am still numb....tomorrow will at least start the process of where I will be heading for the next little while and I am not sure who I see next because the appointment hasn't come through to me from Monash Hospital as yet....I do have my GI guy who is following up the gastroparesis problem (where we live about 1 1/2 hours from the city) to see on Tuesday but I doubt he will get the results as it will be too soon.....however I will ask if he can have them asap....Its like being in limbo......with a huge void....and disbelief .....I hope everyone is well out there and all your AF problems fly far away and healthy days are with you all...... God Bless xxx Jo
Had the MRI today, we asked if they could send the results to my local GI guy and they said they would because its Christmas and they could see I was beside myself....so may have answers tomorrow but may not....good or bad I will try and stay positive....and be brave.....Then have to wait for Monash GI surgeons to get the referral and results from the Lung Specialist .....was very tired this afternoon slept nearly all the way home....
Thanks again for all you kind words of encouragement....still hoping that it will be benign and all will be good....
So unsettling for you. Glad they can get the results quickly. What a tiring day, but it will move you forward and hopefully the news will be good. We are all wishing you well and hoping for the best.
Hi everyone....I haven't been on for a couple of days because I needed to thaw a little....I have some news but its still not what I wanted to hear ....we went and saw my local GI guy....he looked at hubby and I and said what on earth are you two so upset about....he had the MRI results we had no idea what he was on about either....it turns out I do have a lesion in my pancreas its undiagnosed still .....so am still left wondering and remain very concerned about the outcome....but the good news is its small not huge as reported on the CT...... its 18 x17mm ...... not 23 x 17 cm ...How a radiologist can make such a mistake is beyond me , its also beyond the specialist too ....I was seriously thinking about taking my life as pancreatic cancer that huge in a month is terminal....
I'm feeling more positive.... hubby has stopped staring into space in bewilderment and I am not numb anymore..... but am still having to wait for the final result which probably will not come until after New Year I would think....The GI Guy says it may be a cyst but won't know till I have a biopsy he thinks....which still leaves it open to a good or bad result....am trying to be positive and hope its benign .....thanks everyone still in limbo....
This is now looking suddenly not so bad after all for you and let's hope for more good things. As you say it's hard to see how they could make such a mistake, especially when it means so much. Do hope that you'll be able to get some real answers soon and that they will be even better ones. All the best.
Hi to everyone just a short update.....am still waiting.... went to GP she has no results..... so no one is talking to anyone else at this stage....Xmas and New year I expect...am fence sitting...... am to go back to GP on the 12/1 so hope by then she may of been able to get the reported results from Monash and we can have some idea where I go from here....on a good note the AF is near settled but on occasions lets me know its still there....starting to get around a bit more now..... breathlessness has almost resolved too....Still can't vacuum but hubby is happy to do that chore anyway...want so much to drive the car but the medications for gastroparesis are stopping me ...rather be safe and not cause accident to anyone ....responsible , would hate it if that happened too....hugs and well wishes to everyone and hope you all had a really nice New Year celebration xoxox
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6 months post ablation for flutter and afib
3 months + EP review
Should I have bothered with an ablation?
Fear I have been misdiagnosed
Should I or shouldn't I
