Before after now

It's no wonder you're stressed. You are doing well to be able to take pleasure in seeing friends and expressing your frustrations on this forum, rather than bottling everything up xxx

How was the op. I’m due to have mine and am obviously worried. 

Hi RonJoe

The op was ok I guess, the recovery is the hardest part. 

Im not going to make out that it’s easy, it wouldn’t be fair for me to do that, I had a rough time after the op, they thought I was having a reaction to morphine, but the affects carried on after I got home. I was admitted 2 days after for an infection. 

I also found it hard and painful to cough as they get you to do to clear your chest, that turned out to be my diaphragm had become separated after the surgery, this wasn’t picked up until 4 months later when I was admitted again for severe abdominal pain. My colon had slipped into my chest cavity . 

They’re other stories on here of people looking to go home after 6 days so there are other views.

But and it’s a big but what’s the alternative? I have recovered now and I’m 6 years post op. I’ve never felt fitter or more appreciative of life. 

Hi Clive,

Sounds like you had a rough enough time after your surgery. I’m now 7 months after mine and continuing to recover. I was doing well for the first 3 days after surgery but then started really struggling to breathe due to chest pain. Even the morphine wasn’t touching it. Had to end up being anaesthetised again and intubated. Also had a chyle leak which kept me on intravenous feeds for a week. Spent 8 days in ICU before moving to main ward for a further 8 days. I guess everyone’s story is always slightly different but I am slowly regaining my strength and fitness and coming to terms with my new internal plumbing. Like you, chemo-surgery-chemo was the only treatment option I was given if I wanted to be around so, in spite of all the challenges, I am grateful to have been given the option of it all and, like you, am very appreciative of life. All the best, CB

Cool Blue said:

chyle leak

Yea I’ve heard about this might do a bit of research and add it to the symptoms post I started. 

I think it’s such a large operation that it’s considered to have complications but what ever they are they can be sorted. 

strange you say about breathing that happened to me I was in a hospital that had High dependency unit it’s a bit like intensive care the only real difference is the nurse that looks after you looks after another patient too where ICU it’s 1 nurse per patient.

I was sedated and spent 7 days in ICU should have been shorter but as they was bringing me off sedation I kept trying to remove my breathing tube I remember everything but I can’t explain why, consequently they had to sedate me again. All my fault I was a tenable patient. I still blame the morphine ️

w1cky, how are you doing? Any progress with treatment yet? Xxx

so had ct pre radiotherapy scan last week, when they took off the gown, the nurses did look shocked at my frame, worried me a bit, had the lung function test today, wasnt in there very long, so assume not gone to plan, then just when thinking have a few days off the c bomb train, oncologist appointment pops up weds 10.45, and due in thursday this week for laparoscopy and food tube.  if things arent going to change due to what info they have. cant even say its down to hormones all this crying, venting and worrying, but then when had the call from the lovely company ordering syringes, pump and food stuff, just broke down.  last Friday, lovely nurse finally  returned my 4 calls as i was worried, that now we have decided to go with surgeons advice of non surgery treatment, might delay stuff, and i was told, they will look at your scan, and they will decide on treatment plan not you! mm ok, so have a new list of questions when i go in wednesday. 

know what i prefer, quality of life and being under 7 stone not great, but still here to moan, but really concerned weight issue will take me on a different path.  thank you for checking in LozzaT, completely on a what if, pity party last few days, so ashamed to type this,  praying that weight loss isnt down to a new little so and so lurking in the stomach, just me and hubs being overwhelmed and behaving like spoilt children, (thats the pg version!) so from moaning/stressing not heard anything, now freaking out its all happening this week.  off to our little boat tomorrow, will try not to chuck each other in, but we both agree we need to reset, pull over the food and cancer police just for one day at least.

whats worse its hubs 60th next wednesday, not on our radar, last year he spent his birthday, nursing a one boob wife, 2 days after the masectomy, so looking for a 2025 to do book,

its so upsetting that i find it sometimes hard to be nice to the one person that has always been there for me, but feels a million miles away, we will get there, but christ this journey. 

still cant believe its not really a biggy thats talked about , watched the documentary of the amazing cop a feel founders, and the lovely kris hallenga that was diagnosed so early, so brave, and when the little c bomb kept combing back again and again, and her candid chat the night before the masectomy, my god it was inspirational, and also said it is normal to freak out.  just need to let the husband know this.

anything i can do or say to help, of course, and as you lot can tell, tooooo much time on my hands, which i will take all day everyday currently.

love and hugs, no offence we have/ i have seen several counsellors, but my god, people that we have only known a few months, and you lovelies no matter what stage you are at with yourself or your loved one, have been amazing for these outpourings, and so honest and insperational. 

next happy task is to re do the will, as no kids, need to update, half the people on there we dont see or like

I love reading your rants because you just say it as it is. No frills! Even though it's my hubby with the cancer, I find it hard to switch my brain off. I was reading Lowedal's posts and blogs. They seem to have a daily wind down, moment for reflection, which seems like a good idea. We're not very good at that kind of thing though. I have to encourage mindfulness at work but always feel like a fraud when I do it because I can't actually do it myself. The same with yoga and pilates; all that thinking about breathing. I think so hard I forget to breathe!

I'm glad to hear you are finally getting some treatment. The surgery sounds so brutal that it probably wouldn't be good for you unless you could gain some weight. Hopefully, once you have the food tube, you'll be able to build up some calories and strength. Whoever that person was who made the comment about losing weight could do with developing some sensitivity. Well done to your husband for dropping him down to the bottom of his contacts list.

It's a good thing to let go of your tears too. I have a theory that it's a way of ridding the body of any bad hormones or other chemicals caused by negative feelings. 

Thank you for the tip about the hip flask. The early morning dog walkers would certainly have something else to talk about if Rod told them that was what he has in his bag  We reviewed our wills last week and are getting them updated now our girls are adults. What a jolly task!

We've got a bit of conflict with the oncologist. Rod wants a port fitted instead of a PICC because he was told he'd be able to go swimming then. The doctor said he can't because there's still a risk of infection. We also have a week booked in a chalet in January for us and the girls plus one boyfriend. But the oncologist said that we may not be able to go because Rod's in a clinical trial and the week might clash with when he should get his infusions. The nurses are on his side, stressing the importance of quality of life. Of course, this is all dependent upon him continuing to respond well to the treatment. 

Sending you a big hug for the coming week xxx

thank you so much, hope the chalet goes ahead, damn right some quality of life, did watch that lovely lady Kris's documentary who founded cop a feel, think it finally hit home with husband how serious this cancer crap is, currently have sore throat and ear ache, not sure if thats all this muck that keeps coming up, will see if the specialist nurses can advise as dont wont to miss the appointment with the oncologist tomorrow, last one was so confusing and upsetting.  hope rod keeps reacting well, after being really healthy up until this, not even one bought of covid since that all kicked off, feeling this unwell and worried on a daily basis is so crap, will see what they say tomorrow, dont think they will expect me to be this tiny and scrawny, oh well "surprise", nurse even rumbled i had my biggest hoody on and heavy boots before weighing, so got asked to take them off, dammit it

love and hugs as always, x jules

Lozza, 

Dal has been on clinical trial as you know, and we have pretty much told them when we are going on holiday, if you already have something booked then they will need to work around you, what would they do if he was unwell that week?

Dal also has a port, fitted in January 2021,  if it is inserted correctly there is minor infection concerns, might be worth finding out if the hospital teams are trained in port use, as this is the one thing that we have had some issue in, some blood nurses have no idea how to use the port currently.  But is it worth asking the Oncologist again to explain why they believe there is more risk of infection from a sealed port over a picc that can be dislodged or flushed incorrectly, Dal has definitely had a better quality of life with the port fitted.

Lowe'