Update:::

Hi everyone...I hope your New Year is going well. My husband started radiation last tuesday and will go 5 days a week for 6 weeks..he also is doing a different chemo..it is a constant drip from a pack he wears on his side...after the 6 weeks they say they will wait another month to do MRI to see if it has moved off the artery....All this waiting and treatments is driving us crazy...really just so anxious for them to say he is cleared for surgery...I know, I am impatient...He is feeling pretty good right now though...began losing hair but in the big picture that is not a big deal....You all take care and I will update with any changes...also wondering how cath is doing...if she has started chemo...

30 Replies

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  • hi Miki8, is it the hickman line yr hubby has got ? hope all goes well keep positive xxx

  • I'm not sure if they call it that...It is a pump that is giving him chemo called 5FU

    attached to his port that was placed a while back...

  • the hickman line is put under the skin in yr chest with a thin tube to take the chemo into yr body,and it has a small pump to carry around on a strap that goes under yr clothes so carnt be seen,we was told it releases chemo over 24hours,all the best thinking about you,keep positive dear friend xxx

  • Yes then it must be a hickman line....pump is bigger than we thought though..haha...I am trying so hard to be positive...I am sure you know how hard that is....I just cant imagine a life without him...and to see him going through all this breaks my heart... Thinking of u 2 chief....all my best

  • keep being positve Miki8,l know exaclly what your going through and my heart goes out too u & yr hubby ,hows yr hubby getting on?good l hope,l dont know you or yr hubby but l sent you both hugs xxxx

  • My hubby is doing pretty well actually....they say that the doses are small and it shouldnt get to bad until it starts to build up in his system...he stays very tired...gets a bit cranky....thank you for being so kind....In times like these I cant really go to my husband for comfort with my fears of everything happening to him....It is so nice to be able to come on this website and recieve support...it amazes me how total strangers can be brought together and form such a tight bond over this terrible illness....hugs back to you my friend xxxx

  • Hi thanku for yr reply,l understand how yr feeling ,im always hear if u want sommeone too chat too,your never alone,l know things get tough and they will do, its also so heard for our loved once seeing what they have to go through,we feel like were going through it with them,lv done a lot of crying but theres nothing wronge with that its a release sometimes,weve all done it,carry on doing what yr doing yr doing a great job,big hugs too u both xxxx

  • Cath start's cemo. Monday 16th, good luck Catherine, hope thing's go really well for you.

  • I pray that things go well with the chemo for her...thank you for letting me know....

  • Hi to all my friends on this site , i start my chemo on mon . Ihave just got back from the lake district , had 5 wonderful days with my kids and g/ kids at center parcs , i enjoyed every minute and apart from one day was feeling ok . Hope alls going well for you Miki , keep possitive thoughts x x x

  • Hi cath, hoping your feeling as good as can be expected after the chemo , were all thinking about you and send our love and positive thoughts, make sure you get plenty of rest .

    Glad you had a wonderful time with the family too.

    Lots of love , Nessy xx

  • Hi ladies you will find a lot of support from "families in support of pancreatic cancer awareness" on Facebook, I've joined along with my sister Nessy, they are an amazing support of people, all affected by it, give it a go !

    Lots of love to you all Del xxx

  • Hi Cath.....Wishing u the best with the chemo.....keep us posted on how it is going...Thinking of u often.....Thank you Del....I will look that up on FB.....Luv to all.....

  • Hi Miki8.... hows your hubby doing and yourself?hope yr both good,big hugsxxx

  • Hello Chief....hubby is doing ok....very tired...losing hair and some skin rashes, but other than that Thank God, he is doing pretty well....as for me, I am OK....just worry all the time.... I guess we all do that though..How r u getting along????

  • Is your son doing well????

  • dident want to tell u our darling son passed away 17th dec 2011 age just 40 on 12th nov,if i can answer you any question,on our expireance i will be happy to explain,

    plsd yr hubbys doing well keep positive, big hugs too u both ,i know what yr going though dear friend,joan

  • Oh my God..I am so sorry...I didnt realize....I cant imagine what you must be going through....and here I am complaining...I am so sorry....I am praying for you and if I can ever lend you any support please do not hesitate to ask....xoxo

  • What happened...did they just find it too late??? Was it in more than just his pancrease??? Did chemo not help at all??? Sorry, just asking to be prepared for what may happen with my husband....much love to you...

  • Hi Miki8,Jay was being treated for stomach ulcer on march 2nd 2011 then on his 7th wedding anniversary 5th march 2011 his wife took off and left him for no reason othere than she wanted to b single again,then in may the dr sent Jay for a scan ,and they saw somthing called a mass,on the scan at the hospital so they sent him straght away for a ctscan while he was at the hospital, then a month later the dr sent jay up to edinburgh for a biopsi to be told a month later they told him hes got pancreatic cancer and he should have intensive chomo and radiotherapy straght away, well they dident send for jay till the aug and said they were just going to try chemo on him for 3months,after that the dr said at the meeting after jay had 3months of chemo and a scan that the chemo dident work it was pants the dr said,and did he want to try the hickman line after chatting to the surgeon jay said he dident want that, but would travel up to edinburgh for the every week to get the f5,well befor that happened jay started beening sick,so we went into hospital to get the sickness under control for 2days jay walked into the hospital and came out in a wheel e chair,i told the dr i was taking jay home as they wasent doing anything for him i couldent do myself at home,so they took the morphine patches off jay and put him a driver on , a week later jay sadly passed away,bless him ,xxx

  • Hi chief , so so sorry to hear of your loss , we are all here for you , i had my 1st chemo on monday and for 2 days felt terrible , i know we are all going through the same here and its good to keep in touch , once again so sorry . Cath x x

  • Hey Cath....glad you started your tretment...I have been praying for u....how often do u have to go??? I am sorry it made u ill....ask the dr for something for the side effects that may help u....keep us posted ...take care...Miki xxx

  • thankyou Cath,sorry if iv given too much info,im struggling at the moment,all the very best ,big hugs, joan xxx

  • Chief...I cannot believe they took a month to biopsy it!!!! Than another month to tell u what it was??? Then waited until August for treatment???!!!??? That is terrible....I can not understand why they would do that to him....if they had acted quicker..they may have been able to help him....That makes me so mad...what r these Drs thinking??? Darren turned yellow in august..went to dr aug 12..was sent for scan that day....was then sent on aug 15 for biopsy....then was told that it was pancreatic cancer....then they finally started the chamo the end of september....then after the 8 weeks of chemo (gemzar) they say it shrunk about 50%, but was still wrapped around artery...so 2 weeks ago started radiatioon daily and the chemo that stays on him all the time (that we discussed earlier)...Well..yesterday for the first time, he actually left work early and came home and was freezing and so exhausted and he has sores all in his mouth...he looks and feels terrible...he is such a fighter though...he goes to work everyday after radiation, luckily he has a job where he can just sit in his office with his feet up and relax....he feels if he doesnt get up and go every day that he is giving up...they stopped chemo today due to the mouth sores and other symptoms..they said they will start it back next week at a lower dose..but to continue with the daily radiation....I have to admit...in the 19 years we have been married (our anniversary is Feb 28th) he has never shown any weakness...to see him these past 2 days scares the crap out of me....he has got to get through this and have the surgery....I just cant lose him...I am not sure where u live..I live in Virginia....I think u may be in the UK??? Sorry to go on and on...u have been through enough lately....take good care of yourself...I am here if u need anything..xxxx

  • Thankyou Miki8,yes l live in the uk scotland,jay had a sore mouth they gave him medicin said it was thrush,he also got a bad pain in one leg after a chemo day then stopped his chemo as it was a blood clot,no im not impressed with the drs we had,very slow,note enough scans done not fast enough, hope Darren is feeling better today,all the best,my email-joan.mcnicholas@btopenworld.com take care big hugsxxxx

  • Thanks all for your wishes and thoughts , i feel a bit more alive today after the chemo , then next session on tue , its such a crap cancer this . I have given up work maybe its time for Miki8 to do the same , it does'nt mean your a failure , my love to you all x x Cath.

  • and yes the drs did take that long

  • I have been reading this and weeping over my PC with grief, sadness, anger and frustration. Your experiences of the fatal ineptitude which permeates all areas of the NHS in the UK mirrors mine with the loss of my husband on 2nd September 2005.

    He too was languishing from November 2004 with all the classic symptoms of PC being dismissed by the GP and then on long waiting lists to investigate stomach ulcer. After a gastroscopy found nothing 'what a surprise" followed weeks of repeat prescriptions for indigestion.

    I knew something was seriously wrong and begged my husband to challenge his doctor to no avail because he trusted him. I went to an appointment and got tough. Only action was to refer him for a scan. Yes you guessed it - six month waiting list. Pregnant women get priority. So we paid for a private scan 2nd June 2006 and got the devastating news there and then that he had secondary cancers on his liver. If you pay you don't have to wait for bad news. They couldn't see the pancreas so source was not known at that stage but they thought it might be bowel cancer. I took the report and scan CD straight to the GP.

    I still cannot to this day comprehend the lack of action by his GP practice but they took no action and after two weeks when we still hadn't received any communication I decided to sort it by scouring the internet for cancer experts, phoning the consultants secretary and begging almost hysterically for an appointment. One of them took pity on us and booked him in for a CT scan.

    and consultant appointment. 2nd July 2006 he was told terminal inoperable PC.

    I will never forget that day - we went home in a daze and waited. The only communication we had was a phone call the next morning from a very cheery and exited research assistant. His hospital was taking part in a PC pain relief trial to find the best pain control for terminal PC patients "because they can die in agony' and they want to find the best method. I kid you not - I still have the letter that followed the phone call.That was the turning point where my husband lost the will to live. I digress....it took two weeks of daily chasing to get an appointment with an oncologist. Can't start any treatment until they know what type of PC and where!!!

    I can describe the anguish of the experience trying to get the NHS to act with PC (let alone diagnose in the first place) as like being in a train crash and watching your loved one's life ebbing away while no one helps or worse still ignores you completely.

    They failed him from all angles - the saddest part is that this is not an isolated incident but it's not possible to fight mighty NHS. I can see nothing has changed. My heart goes out to you all and YES each and every one of you fight with all your might because it could be YOU that beats the odds - someone has to.

  • Editfmrt....I am so very sorry for your loss...I am so grateful that I do not live there...I live in Virginia USA....I do not understand how this could be happening and how these drs get away with such lacking treatment of people....It is utterly INSANE!!!!! Something has got to change with the way the health system is run....I pray for all dealing with this kind of disgraceful outrage..

  • my only hope and I small sure it is true he is with god and loved ones and happy again god bless you xxx

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