Life with bowel cancer

lindyloo

Dont know what to make of this

Hello havnt been on for a while keep popping in now and again trying to lead a bit of a normal life.
Well Dave had his lung op 2wks ago fairly straight forward over night stay back to ' normal ' in few days 7mm wedge removed with clear margins still waiting for histology results so still dont know 100% if it was the dreaded 'c'
Today had 3mth check with onc he was supprised to see us due to Dave only just having his lung op anyhow he said that because he's had an op then it probably is cancer but nothing had come back from the lung surgeon yet! . Anyhow I then asked if he can fill a form in for us so that we can get a grant from the the Macmillan cancer support and becos his diagnosis was more than 6mths ago needed a Dr to fill in, he ok then went on to say shall I be pessimistic and smiled he then went on to say my job is to keep you alive as long as possible he also said that he doesn't want to go down the chemo route 'just yer ' because it didnt work the last time! He wants to see how thing's go first becos he might want to use it in the future! He then filled the form out he'd written " Dave is aware of his prognosis and at present cancer free but probably have recurrence he has had numerous operations and is suffering from stress and anxiety " when we came out Dave was a bit of a wreck saying he told me that I was dying I tried to reassure him that is not what he said he was saying that we all are dying if you think about it from the day we are born but he wudnt listen just kept saying no he said I was dying. Thing is Dave is suffering mentally due to losing his job waiting for results waiting for the tribunal due to him getting sacked in January after 29yrs with same company he's had counselling he's on higher dose of anti depression he's stuck in a rut wish I'd never asked for the bloody form to be filled in physically he's great mentally he's not
Thanks for taking the time to read this needed to tell someone :x::x:

Lexi

@lindyloo oh my gosh this is completely ditto to us, Mentally hubby has had a mental breakdown, he has only just admitted to our GP the impact of the cancer, thus the stronger medication, no concentration, no interest in anything, can’t complete any tasks and has not driven a car either, even though we are 10 months down the line, we don’t know if he is NED yet as his scan is due end of Aug, but the latest Onc letter states aggressive cancer and high risk of relapse and reaccurance, ( thanks for that) this was enough to ground my hubby to the sofa for 8 days, now a hernia behind the stoma Lol!!! I really understand how you feel :x::x::x:

Lizalou

Hi @lindyloo

That is definitely just the doctor 'playing the game'. In my former life as an optometrist I used to do exactly the same thing to get early treatment for patients with cataracts ('nearly blind, can't drive, danger of falling...') Totally not true, just getting the help we all deserve.

And @Lexi, just read your reply, same thing applies.

If the specialists said everything was fine, nothing would get done. Please, please don't take these statements as the whole truth and nothing but the truth.

Best wishes to all of you....husbands for losing the plot (been there myself) . Partners for having to pick up the pieces (just as hard)

:x::x:

lindyloo

Hi @Lexi its a nightmare isnt it Dave trys to put on brave face but I see the signs he never wants to talk about it only went to drs about sore eye and finally admitted that he was struggling hence the therapy he shrugged it off didnt need a looney man to talk to his words not mine I got him to go didnt really do much for him to be truthful its been 2 1/2 yrs since diagnosed and we are still in limbo ... WE try to be strong for them but sometimes as awful as this sounds I want to run away I never will but sometimes I wish someone would ask if I'm ok sounds awful doesnt it btw Dave also has a hernia not supprised after 3 lots of open surgery 😲 atm not causing any problems touch wood :x::x:

lindyloo

Thank you @Lizalou you have explained it perfectly can get my head round it now much clearer how you have put it :x::x:

Polly 1

Hi @lindyloo has Dave had Cetuximab yet? A similar thing happened to my husband in that the Oncologist said that the cancer would come back and he wanted to hold back the Cetuximab until he needed it (not if - when).

He said you only get one shot at it (NHS funding)and I want to time it right. At the time we were confused as we were really pleased as the scans were clear and ops done and the oncologist said just because you cant see it dosnt mean its not still there.

We realise he was right now as it did come back and C has now been on Cetuximab since last August but it was a real shock at the time as we expected him to say brilliant news not we are waiting for it to return.

Its a horrible journey isnt it - up and down like on a roller coaster. Hanging onto every word the Oncologist says or writes and sometimes reading into things said or written the wrong way. You just have to trust the team, they (usually) know what they are doing 😕

lindyloo

Hi @Polly 1 Dave has had 6mths off 5fu and oxy had oxy stopped bout half way due to tingling hands I'm hoping and praying for no more chemo but no deep down probs will yes its right you find yourself dissecting every word reading into them its horrible I get churning in my stomach at every phone call or hospital appointment even if its just for a chat I'm as calm as then once its over the shakes start and cant function for a while :x:

Polly 1

I'm just the same @lindyloo once a scan has been done every phone call makes me jump, every clatter of the letterbox makes me scared - even though I doubt they have even looked at it yet!
I doubt we will hear anything until we see the Oncologist in 2 weeks and then it will be deep breaths and try and be calm to walk into his office.
We usually think of something nice we can do once the meeting is over...but dont always feel like it afterwards and just go home :x:

lindyloo

Ditto @Polly 1 fingers crossed for you hope everything is good good luck :x::x:

mem

Hi @lindyloo,
I'm glad to hear Dave's lung resection has gone really well and he seems to have recovered well too ☺️.
I'm not sure what form you are referring too, but I just wanted to say that I am in a similar position, as in, chemo will be used if and when. I personally see it as another tool, waiting in the pipeline, ready to kick some ass!.

I have had five procedures on my lungs and was told that I was high risk, but I was also told that 5 lung procedures are nowhere near the record! So basically, I've been trumped on the lung op front; which was good for me to hear as it means there is still potential to have more if needed and if my quality of life can take it. I'm certainly not suggesting Dave will need more, in fact, let's hope this is Dave's one and only, just wanted to highlight that there is always hope.

Far, FAR, easier said than done, I know, but I do hope Dave starts to feel a little more optimistic soon; it just takes one little comment for the whole 'David and Goliath' mental battle to kick off again, with the blooming C stuff being Goliath! If anything does pop-up, then his team will be on it big-time with the best tools for the job. In the meantime, you and Dave have SO got a life to live and no guessing or worrying (again, far easier said than done) will change anything other than enjoying that life in the best way you both can.
Sending lots of Love to you both :x::x::x:

mem

P.s. We all know what happened to Goliath don't we?! 👊🏻!

lindyloo

Hi @mem thank you for your kind and uplifting words means a lot , everything you wrote is so true it's just so bloody hard sometimes getting your head sorted one min you think you are coping the next you feel like it's going to explode , its just good to get thing's off your chest have a bit of a rant more so with people who understand my friend's/family are great but they go home then it's just us sometimes just me , then I feel bad because I'm not the one who has it I sound so selfish I know 😕 right I've had my little moan going to pick myself up dust myself down and smile cos life is worth living 😁 going to find goliath and kick his ass 👊 :x::x:

mem

Absolutely agree with you @lindyloo, you rant away! Trust me, I can rant for England, just ask my hubby 😉. You are far from selfish btw. I'm not sure how I would cope if it were vice versa with me and my hubby.
I really do hope you both catch a break from all this. Let me know when you find Goliath and I will join you in the ass-kicking 👊🏻! :x::x::x: