Dads cancer is back, im terrified.

Thankyou, you too. My dads sleeping a lot today, im guessing thats from the proceedure and is fairly common but also the heat is not helping, take care. Xx

Hi Court, The house is roasting today, shame they couldnt keep him in the hospital for a few more days as it was so much cooler in there. Dad had an ok night last night, and all his stats seemed ok this morning, hes just so tired though so sleeping quite a bit during the day at the minute, but apart from that it seems to be going OK (although im still keeping careful a watch on him)  Are you managing the hot weather ok. Xx

That’s such a shame Wizzle21 I really can’t believe the temperatures today .

Mum has struggled a bit . We are further north this week and can’t you believe it , it looks as though a storm is coming in .

Take care and stay in touch .

Much love to your dad ,

Court 

Hi, my name is Guy, and I have had bowel cancer that spread to the liver, both have now been successfully operated on. Get other close family members or friends to help you, Macmillan themselves, the consultant that you see. There are a multitude of people that can help you as well as your Dad at this difficult time. Wishing you all the best for the future 

Hi Court, How are you and mum? 

We had dads first hospital check with his surgeon today, he says they removed all his cancer cells and there is a 40% chance now to be curative.... Only 40, i thought it would be higher? I think dad was also a little disappointed at that particular comment considering what hes been through but to keep morals high i just said "yes, dad, but its still 40%, you could be one of the 40!" Gosh i hope im right....

Theyve now given dad duretics to hopefully help with the swelling still in his legs, ankles and feet, which look like little balloons, this makes it somewhat difficult for him to walk, even though hes been told to walk, so thats not really happened much, the walking! Im hoping the duretics will help with this and the swelling.

Hes also had the drain removed today as the ascites (abdomen fluid) dried up a few days ago, one minute fluid there, the next it was gone... It worried me so much that it virtually vanished overnight that i phoned the hospital for advice as i was quite worried that something was wrong, but they said it can be quite normal to just vanish, dosnt stop you panicking though!! (They really ought to provide an information pack when your discahrged from hospital for what to look out for, whats normal and what's not, and what to expect, or what to watch out for whilst at home etc which i have found to be the most annoying thing, not knowing and having to worry or guess and so call nurses or hospital for advice, something that could have been avoided had they provided a full information pack for home at time of discharge.)

Anyway, things seen to be going ok and weve been told that dad is doing as well as they'd expect at this time considering the massive surgery hes had. We go back in another 10 days for another check. 

During dads time at home he was also prescribed Lactalose, i think this may have been to do with helping the liver in some way? but its been driving dad crazy as it was quite a large daily amount but its been sending his sugars through the roof, again making it very difficult for us to control his sugar levels but weve been trying our best.

The only part thats really concerning me now is that dads developed a strong pain in one of his sides and hes certain its the kidney area. We mentioned this to the consultant but he didnt really say much about it, however he did order some blood tests so now im wondering if that (after reading up) could be to check on his kidney functions as ive read that you can get issues with the kidneys after this type of surgery, im hoping that dads pain for this dosnt get too bad, im also hoping that it'll pass over and its not his kidneys having issues, but just a normal part of the process (fingers crossed)... .

Did you mum experience many or any side effects or complications once home? Etc, was she taking lactalose or had any pains in her back area that you can recall?

Ps im. Sorry i write a lot but im also, like yourself, hoping that what i write will help others to see whats to be expected after a resection.

Sending love to you and mum. Xxx

Hi Wizzle21

I guess my mum was not part of the 40% as she had a small lung met afterwards but she was in a position to have it removed at 8mm and was by far the easiest surgery to date . Now sure what stats she would be placed under.

The fluid is very uncomfortable. My mum needed the diuretic too . She was three stones heavier after surgery , had to wear maternity clothes and up three sizes in her shoes . However as the liver renerated it gradually came down . My mum needed help getting her legs in and out of bed , bath and dressing . It slowly came down . The liver apparently pushes protein through the body which controlsluids or something very unscientific but protein and fluids are connected !. She ate a lot of chicken !

The diuretics made a big difference. Although mum was walking round her house and garden to prevent blood clots , anything more than that at this stage was not possible for her .

I honestly can’t remember the lactalose part but I take it his pain killers are the potential problem ?

I think the kidney aspect is what they look out for in hospital post op but that would have a very close eye in HD . I don’t think they can come through such extensive surgery and not have pain . My mum did experience lots of random pain as she healed . Lots of scar tissue internally and pressure from pockets of fluid if I remember right but it was a long time ago . She did end up in A and E at one point !

Sounds as though your dad is actually doing very well .

They will have their eyes all over his bloods . I think it’s just bigger than we can imagine and the recovery throws up things like the fluid we did not anticipate .

You are doing great !

Your dad is so fortunate to have you .

Take care ,

Court 

Hi Court, 

Not messaged for a while, How are you. Has your mum enjoyed the lovely weather. Send my best to her.

My dads not doing bad, were 7 weeks post op now. Dads still very tired, which is most days, and it frustrates him that he dosnt have the same energy as he did before he had the operation, he tries his best to get out and walk daily for about 30 minutes a day with a 5 minute rest break at half way. He cant seem to manage much more yet without feeling exhausted, but at least hes getting out and about a littlewhich is good.

Hes had some major issues with his bowels, where hes not been able to go to the toilet, this has been a regular occurrence since the op, and it causes quite a bit of pain, i dont know if maybe his body had (or has) become relient on the laxatives he had to take after the resection but it has been major issue for him.... Were still ongoing with this fight, so to speak, and the drs have perscribed all sorts to try to help remove the back log shall we say! Its still not as it should be so were going to mention this at his next review on Friday.

Also hes been getting really sharp, sudden pains in his stomach area where his scar is (which has healed up fantastic) and were not sure if this is normal or not? or what could be causing it? but it literally makes him keel over for about 5 seconds or so and you can see the pain in his face, then it passes as quickly as it arrived,  its very strange, obviously were speculating, but thinking maybe movement to his bowels? or the liver generation process? or even things moving about internally?  ive told dad to mention this to his consultant but hes told me outright that hes scared of what he may hear (Bless him, hes been through so much that im not suppried hes worried) i do worry about it too, but feel that if its something to be sorted, the quicker the better!

I moved back to my own home last week, which is nice that we can now feel that dads in a stable enough position to be on his own (not to say we dont check in on him every day, cause obviously we do) but so far things seem to be going in the right direction.... His legs are even back to their normal size and his tummy as well but were stil waiting and MRI for an internal check. I feel currently so much more relieved and settled, but i wont lie i do still worry a little on what the future may hold for us as a family and i know the road is long for us all, but at least were a little further along it every day, step by step Xx

Hi Whizzle!

Sorry to hear about your issues but `I do hear you` as I am going through this at the moment too. My husband is going through chemotherapy at the moment after his bowel cancer recurring after only 4 months post operation. I the weeks leading up to his initial diagnosis last year I was an absolute `mess`. I could hardly eat, sleep or just about not be able to focus on anything other than this. When he got his diagnosis last July it was a relief funny to say because then we knew what we were dealing with. Before all this I was consulting `Dr Google` and making myself ill trying to work out what it could be IBS (Irritable Bowel Syndrome) Crohns Disease Colitis anything but cancer but then of course I now know Dr Google can play with your mind and is not to be trusted on certain things. So the fact his cancer was `local` meaning the tumour was sitting in the one place and not spread made things that bit more easier and for the fact they said they could operate and cut it all out. It had apparently been sitting there for about 3 or 4 years without showing symptoms. So he got the op in January and In February at the follow up appointment I asked the oncologist if he needed more chemo or radiotherapy and they said no. Then in May at a further follow up appointment a blood test came back showing his CEA markers (these are chemicals in your system that dectects cancer ) had risen which suggested the cancer had come back and a further CT scan confirmed this. Like you I knew something was wrong when they said they wanted to see us in person to me if it was all ok you would have got something in writing or a phone call. His surgeon was very upset when she told us about it coming back as he had been recovering so well and for it to come back so soon was an absolute blow to both of us. You just go `numb` and as many say just shut down completely. My husband has just started chemotherapy treatment again and I feel at the time if they did chemo after his operation it would have detected and killed any of these cells they say at times are hard to detect. They can't operate this time because of where the tumours are they are it seems in an awkward place and surgery may be risky so this is why they are doing the chemo and he'll have a few cycles of this. I am so sorry for what you are going through Whizzle. My own dad had lung cancer and COPD but it was at the stage where it had spread right through his body and he was the opposite he just flat refused any treatment at all. I really hope they can do something for your dad. Thinking of you. Take Care. 

Vicky xx

Hi Wizzle21

Sounds as though he is doing great on many levels and lovely for you to get home again .

Big steps forward for sure .

Obviously we recommend any pain like that gets checked by the appropriately qualified personnel. But my mum did have issues . I honestly could not say if it was regeneration or adhesions setting after so many surgeries but it was sever enough to go to a and e one night . Nothing was found to be of concern and with time eases off .

However we always erred on the side of caution . A quick phone call to his team can ease things considerably.

It took a full six months for my mum’s energy to

 Return . I don’t think you can underestimate the size of the resection and the hit it takes . Major regeneration going on too ,

Keep heading forwards . You are all doing great 
Court 

Hi Court, 

How are you all? Were so, so...

Had good (and bad) news within the space of 24 hours!

Dads fully recovered from the liver op, all back to normal and doing well, which is just incredible! 

On Thursday of this week dad had the final results from his liver scan and we were advised his liver was cancer free and back to normal size etc, so once again, for the 2nd time, dad was classed as cancer free.... We were absolutely elated, especially after going through so much, so happy, we'd got through it all for a second time and something so major too, anyway after happy discussions, the Dr sent us on our way with a routine blood test and things couldn't have been better.....

Roll on the next morning (this Friday) ... A phone call from the hospital, markers are back from his blood test and are up, how quickly you can be shot back down from happiness, i could have cried! I felt like we'd just got off a game board and it was all over after winning the game then the next day... Placed right back on the start square for it all to begin all over again (thats the only way i can describe it)

So,... Were now back awaiting scans again. Im really hoping its a false alarm with his markers... But in all honesty i feel flat on the floor ...  All i could say to dad was "weve not come this far to give up now, we can do it, weve gotta keep going!" So thats where we are now, waiting to see if theres a 3rd reoccurrence.

I just dont want to be sat there with dad yet again for those words again, we know fully what to expect when we sit in those rooms waiting for the doctors to speak, having been through it all before, but it still dosnt make it any easier. If anything i think i personally may find it more difficult thinking where does he have it this time? And is it treatable?. I feel so sad and disheartened right now. I hate "C" with a passion, its a horrible, cruel disease but were not giving in to it! 

Sending love on to you and your mum..xx