HUBBY WITH TERMINAL LUNG CANCER - DESPERATE

HI THERE I AM NEW TO THIS GROUP BUT 2 YEARS AGO I JOINED THE COLORECTAL CANCER GROUP, MY HUBBY HAD BEEN DIAGNOSED WITH COLORECTAL AND LUNG CANCER,  BOTH PRIMARIES,  HE HAD A LUNG LOBECTOMY AND WAS TOLD ALL WAS REMOVED AND THINGS WERE FINE WITH REGARD TO THE LUNG SO I CONCENTRATED ON THE COLORECTAL PROBLEM BECAUSE HE NEEDED MORE RADICAL SURGERY TO DEAL WITH THAT.  HE HAD THAT SURGERY IN NOVEMBER 2018 AND WAS GIVEN A COURSE OF 30 WEEKS OF 5FU   AS A  PRECAUTION TO MOP UP ANY ROGUE CELLS IN HIS BOWEL,  HE WAS LOOKING FORWARD TO RINGING THE BELL AT THE END OF THE CHEMO BUT UNFORTUNATELY THEY  DID A CT SCAN AND TOLD US THE LUNG CANCER WAS BACK AND INOPERABLE,  ALL THEY COULD OFFER WAS PALLIATIVE CHEMO AND IMMUNOTHERAPY.  THE TREATMENT STARTED EARLY DECEMBER 2019 THE NEXT ON WAS 3 WEEKS LATER - X-MAS EVE -ALL SEEMED OK UNTILL HIS BLOOD TEST IN JANUARY SHOWED THAT HIS RBC HAD DROPPED DRAMATICALLY AND HE NEEDED A BLOOD TRANSFUSION,  THIS WAS BLAMED ON THE CARBOPLATIN  THAT HE WAS BEING  GIVEN AND AS HE WAS ONLY ON THIS TYPE FOR 12 WEEKS IT WOULD IMPROVE ONCE THIS WAS STOPPED.  HE WAS HAVING TREATMENT AND TRANSFUSIONS EVERY 3 WEEKS.  HE HAD ANOTHER CT SCAN IN FEBRUARY AND WAS TOLD THAT THE TREATMENT WAS HELPING,  THEN CAME COVID 19 AND WE VIRTUALLY LOST CONTACT WITH THE ONCOLOGIST EXCEPT BY PRE DETERMINED PHONE CALLS WE WERE TOLD THAT THE TREATMENT WAS BEING SUSPENDED AFTER THE  SESSION THE LAST WEEK IN MARCH,  IT WAS SAID TO BE BECAUSE OF THE PROBLEM WITH THE RBC AND THE TRANSFUSIONS BUT EVEN WITH NO TREATMENT THE PROBLEM STILL AROSE AND HE CONTINUED TO NEED THE TRANSFUSIONS.  IN APRIL I HAD TO CALL AN AMBULANCE BECAUSE HE WAS HAVING TROUBLE BREATHING AND THEY FOUND THAT HIS PULSE WAS 180 THEY GAVE HIM DRUGS TO STABILISE HIS HEART RATE  AN X-RAY SHOWED THAT HE HAD BLOOD CLOT IN HIS LUNG A P/E,  HE WAS THEN PUT ON ANTI-COAGULANT TABLETS  APIXABAN.  FROM THEN ON THE BLOOD  TRANSFUSIONS WERE GETTING MORE FREQUENT EVEN THOUGH HE WAS STILL NOT BEING GIVEN ANY TREATMENT, APPROX ABOUT EVERY 10 DAYS. SO IN JUNE THEY TOOK HIM OFF THE TABLETS AND PUT HIM ON THE S/C INJECTIONS INTO HIS TUMMY TWICE A DAY HE HASN'T HAD A TRANSFUSION SICE 22ND JULY SO THATS GOOD.   IN MAY HE HAD ANOTHER CT SCAN WHICH SHOWED THAT HE NOW HAD METS IN HIS LIVER,  BECAUSE THEY DONT KNOW IF IT IS FROM HIS LUNG OR BOWEL THEY CAN'T RESUME ANY CHEMO BECAUSE THEY DON'T KNOW WHAT THEY NEED TO TREAT A LIVER BIOPSY WAS TRIED LAST WEEK BUT DECIDED IT IS TOO RISKY BECAUSE BECAUSE OF HOW DEEP INTO THE LIVER IT IS.

IT NOW LOOKS LIKE THERE WILL BE NO MORE TREATMENT ALTHOUGH NO ONE HAS YET SAID AS MUCH,  IN THE MEANTIME FOR THE LAST 4-5 WEEKS HUBBY HAS BEEN SUFFERING FROM A BOWEL BLOCKAGE,  VOMITTING,  VIOLENT STOMACH RUMBLING AND DIFFICULTY EATING AND DRINKING.  THE GP SURGERY HAVE REFERRED HIM TO THE PALLIATIVE NURSING TEAM AND MORE OR LESS WRITTEN HIM OFF NOT EVEN BEING BOTHERED ABOUT THE FACT THAT HE WAS SEVERELY DEHYDRATED AND AT RISK OF COMPROMISED KIDNEY FUNCTION.  NO ONE CAN TELL ME ANYTHING ABOUT THESE SYMPTOMS IS IT A SIDE ISSUE OR IS IT A SIGN THAT HE IS GETTING CLOSE TO THE END.  THE PEOPLE THAT SHOULD BE ABLE TO HELP (CONSULTANTS)  ARE IMPOSSIBLE TO CONTACT

DOES ANYONE RECOGNISE THESE RECENT SYMPTOMS THAT HE IS HAVING, I DON'T WANT ANYTHING SUGAR COATED,  I JUST WANT TO KNOW WHAT COULD BE HAPPENING AND WHAT TO EXPECT IN THE LONG TERM.  I HOPE I AM NOT ASKING TOO MUCH AND I APOLOGISE IF I AM. 

Regards  SWMBO

  • Hi

    So very sorry that you have cause to be on here. I don't think I can be of much help; I just didn't want your post to go unanswered.

    Try again to get hold of the Consultants; go through their secretaries (the hospital switchboard will be able to put you through). Failing that, if he is in pain and/or deteriorating then get him down to A&E, where he will have to be seen.

    I do hope that you find some help soon.

    Kegsy x

    "If you are going through hell, keep going" ; Sir Winston Churchill
    " Cancer may take my life; however it will not become my life" Kegsy August 2011
  • Hi there,  thanks for taking the time to read my post and to reply,  I think I needed to get all of that out of my system if you know what I mean,  I have already done what you suggested,  the Oncologists secretary has not responded I have been waiting for about 3 weeks and I took Hubby to A & E last Monday, he was kept in till Thursday, they put him on a drip to re-hydrate him and attempted the liver biopsy but we are still none the wiser about anything. 

    We have got one of the palliative nurses coming tomorrow,  another new face,  we will see what info we can get out of her.  It has been good hearing from you,  keep yourself safe .

    The best person I Have spoken to yet was a MACMILLAN Nurse who I contacted on the National help line,  she was absolutely wonderful and gave me some very good advice. 

    Best Wishes  SWMBO x