FINISHED CHEMO AND PICC LINE REMOVED.... HOORAH! NOW THE WAITING GAME..?

Bowel (Colon & Rectum) Cancer

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FINISHED CHEMO AND PICC LINE REMOVED.... HOORAH! NOW THE WAITING GAME..?

No. of entries: 2 | No.of favourites: 0 | Posted on 19 Feb 2012 12:19
  • HELLO TO YOU ALL, MY NICK NAME IS DOLLY AND I AM SO IN NEED OF FRIENDS THAT COULD TELL ME WHAT TO EXPECT NEXT?  I HAVE NO CHILDREN AFTER 37 YEARS OF BEING WITH HUB I FINALLY THINK THAT WE ARE STRUGGLING THROUGH, OTHER FAMILY HEARTACHE - AND THE LOSS OF OUR 2 OLD BORDER COLLIE DOGS AND HERE WE HAVE THIS HORRIBLE DISEASE.  PLEASE TELL ME ONE THING .....DOES THIS CHEMO EVER LEAVE YOUR BRAIN AND OTHER PLACES, BECAUSE I THOUGHT THAT AFTER HE HAD FINISHED HIS 6 MONTHS OF WEEKLY 5FU CHEMOTHERAPY  ETC .,THAT HE WOULD STOP BEING QUITE SO GRUMPY....BUT HIS TEMPER IS AWFUL AND IT IS LIKE TREADING ON EGG SHELLS ALOT OF THE TIME..  THE ONLY TIME HE IS SOFT AND GENTLY SPOKEN IS WHEN I SAY GOOD NIGHT TO HIM AND THEN HE IS THE SAME LOVING CHAP THAT I WAS USED TO?   ANYTHING I NEED TO KNOW.  I KNOW THAT HE ALWAYS APOLOGIZES AND LEAVES ME LITTLE SLOPPY NOTES THE NEXT DAY BUT WHEN HE IS SO AGRESSIVE, I JUST THINK...WHAT IS WRONG? I WOULD APPRECIATE ANYONE WHO CAN HELP. OR IS IT JUST THE WAY OF CHEMO AND THE FACT THAT HE HAS LOST A FEW STONE AND FINDS IT DIFFICULT TO TALK ABOUT IT AT ALL!!! HE TALKS TO EVERYONE AT HIS PLACE OF WORK AND THEN I FIND OUT THINGS, THAT HE HAS KEPT FROM ME .YEA, I KNOW,  THE ONES YOU LOVE....  HEY HO!  JUNE 8TH LAST YEAR HE HAD HIS ILEOSTOMY. 3 DAYS IN HOSPITAL TURNED INTO 15 DAYS.......... AND NOW A YEAR TO THE DAY , WELL 7TH JUNE HAS TO SEE THE CONSULTANT. SEEMS RATHER A LONG TIME AFTER THE END OF CHEMO?  HE HAS ALSO GOT PLEURAL PLAQUES ON HIS LUNG AND THIS WORRIES ME SO VERY MUCH AS HE HAS A WEAK LUNG CAPACITY THROUGH ASBESTOS WHEN HE WAS AN APPRENTICE AT 20 YEARS OLD.  I HAVE BEEN TOLD THEY CAN REAMIN DORMANT FOR ALONG TIME, BUT I WAS WONDERING , WHAT IF THE CELLS HAVE NOT ALL BEEN KILLED OF WITH THE CHEMO AND THEY MAKE THEIR WAY TO THAT AREA?  BASICALLY, I AM A WORRIED WIFE OF 60 WHO LOVES HER HUSBAND TO BITS AND WANT TO KNOW IF I AM ON MY OWN OR OVER REACTING?  I KNOW MY DOCTOR HAS GIVEN ME TRANQUILLIZERS  FOR THIS AND I AM PLEASED AND FIND THEM SO HELPFUL.. .... SORRY TO SOUND SO DESPERATE. BUT I JUST THOUGHT IT WOULD ALL HAPPEN ALOT QUICKER THAN THIS AND HE IS SO POSITIVE AND STRONG IN HIS MIND AND I AM JUST, SCARED.  

    GOD BLESS, I AM AM GOING TO HAVE TO GO TO BED NOW -- AND HE WILL BE A SWEETIE AND AS USUAL NIP INTO THE LOO, DO THE NECESSARY AND BE ASLEEP AFTER 5 MINUTES, BLESS HIM. I LAY AWAKE UNTIL I HEAR THE BIRDS ...

    NIGHT NIGHT AND HAVE PEACEFUL , POSITIVE DREAMS. LOVE AND HUGS AND " THANK-YOU" ALL. x x FROM charlieandlily , who we had for 14 years!!!!!!   Heartbroken still. Never again will we have our own dog, just borrow others when they go on holiday.!!! x x x x 

    LOVE AND HUGS FROM CHARLIE AND LILY XX ANYTIMEYOU WANT TO DISCUSS ANYTHING ABOUT BOWEL CANCER, PLUS MY DEAR HUBBY HAS PLEURAL PLACQUES , ON HIS LUNGS, THAT IS CAUSED BY THE ASBESTOS RELATED FIBRES THAT HE HAS GOT FROM 45 YEARS AGO WHILST WORKING IN A COAL FIRED POWER STATION.  KEEP SMILING THROUGH IT ALL. IT IS JUST SO HARD TO KEEP STRONG!    HELLO ALL OF YOU LOVELY PEOPLE OUT THERE, IT IS NOW FEBRUARY 3RD 2012 AND HUBBY HAS ONLY 2 MORE CHEMO SESSIONS LEFT TO GO AND THAT IS 6 MONTHS GONE PAST, IT HAS BEEN 8 MONTHS NOW SINCE HE FIRST WENT TO HIS DOSTOR WITH A FUNNY BOWEL....HIS ILEOSTOMY HAS NOT BEEN A PROBLEM AT ALL TO HIM, APART FROMA FEW DAYS WHERE HE DID NOT DRINK AND EAT ENOUGH AND HE BECAME DEHYDRATED AND ENDED UP WITH AN AMBULANCE DASH TO A & E IN THE EVENING, AFTER LOOKING LIKE DEATH WARMED UP I JUST MADE HIM GET TO A DOCTOR , AFTER MUCH ARGUING, THAT HE WAS O.K . AND HOW HE JUST DID NOT WANT TO MAKE A FUSS......GOOD JOB HE DID GO, HIS B.P. WAS 50/60 AND DROPPING SO THEY SPENT 3 DAYS  WITH HIM AND AFTER 2 NIGHTS OF BEING IN A RATHER UNPLEASANT WARD, WITH PEOPLE THAT WERE EXTREMELY POORLY, HE WAS PLEASED TO COME HOME TO THE WIFE OF 37 YEARS, WHO IS STILL TREADING ON EGG SHELLS AND OF COURSE, NEVER RIGHT.......HA HA HA.  HE IS A LOVELY MAN AND IS ALL THAT I HAVE, WE HAVE JUST LOST BOTH OF OUR DOGS WITHIN 6 MONTHS OF ONE ANOTHER SO THE HOUSE IS SO QUIET AND EMPTY.......AT THE MOMENT!!!!!!  HE WAS SO VERY UPSET AS THEY WERE LIKE THE CHILDREN WE NEVER HAD AND BOTH WENT OFF TO SLEEP QUIETLY AND IN NO PAIN NOW.   THINK I WILL COME BACK AS A SLOPPY LOVING BORDER COLLIE AND HOW MUCH EASIER TO HAVE THE ENDING THAT THEY HAVE, THAN THE ONES THAT PEOPLE LIKE MY MUM HAD. SHE WAS GONE AT 55 IN HER BODY BUT DIED AT 60 OF MOTOR NEURONE DISEASE......SHE WAS COMPLETELY AWARE OF EVERYTHING THAT WAS GOING ON IN AND AROUND HER, BUT WAS IN A BODY THAT WAS TRAPPED WITHOUT BEING ABLE TO COMMUNICATE FOR 5 YEARS OR LONGER, KNOWING THAT SHE JUST HAD TO WAIT TO CATCH PNEUMONIA OR SIMILAR,  THOSE WERE ALOT WORSE TIMES THAN MY DOGS HAD OVER THE PAST 5 YEARS,  AT LEAST WITH CANCER YOU DO GET , MOSTLY A CHANCE OF LIVING....FINALLY AFTER ALL THE ROTTEN CHEMO AND NASTY SIDE EFFECTS, MUM HAD NO CHOICE.  SO MY HUBBY, WHO HELPED MY DAD AND THE REST OF US AND EVENTUALLY 24 HOUR HELP, FEELS VERY GRATEFUL TO ALL THE WONDERFUL THINGS THAT THE MACMILLAN CANCER GROUP HAVE DONE ETC.,  HE WILL SURVIVE THIS, HE JUST HAS TO............I LOVE HIM SO MUCH,  HOWEVER, I CANNOT SAY THE SAME ABOUT HIS CHEMO...WE ARE JUST NOT EVER GOING TO BE 'FRIENDS, I AM SORRY 5FU''! ! 6 MONTHS IS ENOUGH FOR HIM AND DARNED WELL TOO MUCH FOR THE PARTNERS OUT THERE.  GOD BLESS YOU ALL, I WILL COME BACK AND TELL YOU WHEN HE HAS HIS REVERSAL AND THE NEXT INSTALLMENT OF LIFE WITH AND WITHOUT .......THE WORD WE ALL HATE. CANCER........grrrrrrrrrr.XX BIG HUG TO ALL WHO WOULD LIKE ONE COMING RIGHT NOW.          MMMMMMMMMMMMMMMM.. GOD BLESS YOU ALL AND NEVER GIVE UP THE FIGHT, THEY ARE LEARNING MORE EVERY MONTH, EVERY YEAR AND YES THEY WILL FIND A CURE ONE DAY BUT FOR US ALL, AT THE MOMENT WE ARE LUCKY TO HAVE SUCH A WONDERFUL N.H.S. AND SOME REALLY GOOD HOSPITALS, AND HOSPICES AND CARING STAFF AT ALL OF THEM.........SPEAK TO ME IF YOU WOULD LIKE TO ANY NIGHT I AM HERE, ABOUT 10PM ONWARDS.  I JUST CANNOT SLEEP AN DO WISH I COULD.  I STAY UP NIBBLING CHOCOLATE AND HUB IS SNORING HIS LITTLE HEAD OFF.  HE IS  2 STONE LIGHTER , AND I AM PROBABLY A STONE HEAVIER....TRYING TO KEEP UP WITH HIS EATING OF SUCH HIGH CALORIE FOOD, YUMMY FOR HIM, AND CELLULITE PLUS FOR ME. ha ha ......KEEP SMILING. XX Charlieandlilyxx

  • Good afternoon, Dolly,

    You are going through a very rough time and I think it is the case for many many carers. The person who has cancer has a lot to cope with, yes, it is tough, tougher on some people than on others, but at least the patient has things to do. The carer is often left feeling useless and not even able to use his or her own coping strategies: s/he can only witness as the person s/he loves struggles to find his/her own way to cope. It is very hard. I often felt that my cancer was actually harder on my husband than it was on me. He coped beautifully but I think it is important that we, patients, acknowledge the hardship cancer put our spouse/partner through...

    You are a very loving wife, Dolly. Obviously your husband knows that and remembers that, hence the notes and apologies. But at the moment and maybe because the treatment is over and he has a lot less to do to take care of his cancer, he finds it difficult to come out of himself and "let you in" again... It is hard on both of you. Of course he speaks more with friends and colleagues, of course he is more pleasant and present and thoughful with everyone BUT YOU at the moment.... he is stuck into himself and facing cancer. He is not taking care of you but only of himself.

    Chemo is only one source of side effects.. the whole ride with cancer is a big trauma for  most people. Some have words and can reach out. Some panick and then gather themselves again. Some are good at accessing support. But for other it is harder: the ones who tend not not put too many words on their feelings; the ones whom are used to cope and move on.... Maybe your husband is of this type: pushing, pulling himself until the tempest is over. But with something like cancer, the struggle is never over and other type of coping strategies need to be implemented.

    After chemo is over, and I am talking here of what I felt the 2 times chemo has been over for me, after chemo Time becomes long again, so to speak. You had adopted a very short-term kind of time frame all along the treatment: from a chemo to the next, from a scan to the next, from a consultation to the next. A few days at a time or even one-day-at-a-time. And that pace ha helped you get through. Now the treatments are over, the Dr. said goodbye and doeo snot expect to see you for quite a few months. You lift your head and expect to get back to the old ways of making plans, having projects, mid-term, long-term. Yet... you cannot: you contemplate your future and you realise all that cancer has taken away from you... your energy and strengths, but these will come back, maybe only partly, but with some luck a large part will come back. But your future is gone. Dolly, this is something difficult to grasp maybe when one is not the sick person: cancer has taken away your future. From now on and for ever, the cancer patient will never be able to take for granted that s/he has a future... and to some people, this is hard. There is no magic wand but finding a way to ACCEPT that reality. Our life will never feel the same, ever.

    For most people using words would be soothing. Some do not need that as much, yet the closeness with one's spouse or partner is essential, for both parties. If you are 60, Dolly, your husband might be a bit older and being that age and being a man, he might not be so keen to go and consult a psychologist. Yet, it could be good for him, for you and for you both together. And there are very good pscyhologists who have specilaised with this type of issues. The McLillian nurses would know of one in your area. From what you describe, your husband sounds like being quite angry. He is probably angry at what cancer has taken away from him. Anger is such a commun way to react and such an easy one to deal with for a psychologist with some good skills.

    Although your husband might not be interested in going to talk to someone, would he eventually accept to do so for your own sake?

    You write about your dogs... How sad it is that you lost at such a hard time their soothing presence! A dog's presence is amazingly therapeutic and it sounds to me that they would have helped you keep another focus than your husbands' mood, and by the same way they might have given him maybe some free space to work it out. Are you sure you have completely ruled out the idea of having another dog? Of course it is taking the chance that something would happen to that dog as it happened to the other 2, and maybe it is still too soon. But, if your lifestyle allows it, why not wait and see if in a while you would not be ready for another dog?

    Dolly, it is very good that you can reach out and write here when the atmopshere is too hard on you. And it is beautiful to read of your love for your husband and how caring you are.I hope that in time, he will be able to "lift his head" away from what cancer has taken away from him, to realise again what a jem he has had all along at his side. Of course he knows, but at the moment he has difficulty coping with all that happened to him. Yet, I hope that you will find a way to remind him that at the end of everything, the only viable way to live, whatever Life has put on one's path, is through loving others...

    Keep using this site to write and remind yourself that you are hurting and very legitimate in what you expect from him, despite cancer.

    With best best wishes, Dolly,

     

     

    Claire

    Claire B.

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