Been to see my hubby Martin in hospital today. He had his op on Thursday, he is feeling sick & very tired, totally different to usual. After all his previous ops he has bounced back & by day 3 he is frothing at the mouth to get them to discharge him. He isn't one to moan, he doesn't like to bother or worry anyone, so I know he is def feeling poorly - this time they didn't actually remove the tumour, they've said it's inoperable this time, too dangerous, now we've got to wait for an appointment with the oncologist to discuss chemo.
I've asked if we can see a doctor to discuss what they found when they opened him up in a bit more detail, I got a 5min telecon with the surgeon on Thursday straight after the op, & Martin has had a total of 5 mins with the surgeon & various members of his team each morning since Thursday. I was sure the surgeon told me that as it was it was inoperable but if he has chemo & they can shrink it, he would have another go, but they've told Martin that there will be no further operations & chemo is the only option.
What does inoperable actually mean?
Let's see if we can actually get to speak to someone tomorrow...
inoperable can be used to cover several situations, and believe me surgions hate to be in that position they see it as a failure.
One of the main reasons could be the way the tumour has attached itself to othere organs and it could cause more damage to remove than to try to shrink it.
It could be too large to remove safely or if they could they may not be able to get it all and the fear of stray cells going off to other parts of the body and start growing there is too high to take the risk.
Could be totaly wrong but this may give you some idea the only one who can tell you for certain will be the surgion.
Good luck hope you get some answers
g
FormerMember
My husband was in hospital recently with secondary liver cancer and the doctors and nurses were absolutely fabulous even though it was inoperable and time was not on our side You have to be assertive and ask to speak to a doctor face to face and give you all the options. Don't be afraid, they have to speak to you if you insist and if they still won't then become such a nuisance to them they will talk to you. I wish you all the luck in the world and hope that you and your husband have lots more time together. I will be thinking of you both. Ann
FormerMember
Thanks Glenna.
We've been told that they wont rule out another operation but there are no guarantees, if the chemo works & it shrinks the tumour they may operate again.
Martin spoke to a different doctor at the hospital the other day & whilst I'd asked him to ask how big the tumour actually is now, the doctor answered that it was bigger than they'd thought it was going to be & it was spread out more than they'd thought it was going to be, entangled in with his blood vessels.
We're just waiting for an appt with the Chemo Consultant now.
Mandy xx
FormerMember
Thanks Ann,
It was very difficult in hospital this time, I felt that we were invisible. This was Martin's 5th operation.
Martin is home now, he ended up discharging himself late on Thursday night after being told on Tuesday morning he could go home, then being told at 5.30pm that they needed to keep him in overnight to monitor him as they'd only removed the epidural from his back that morning. (it had been left in unconnected since Sunday morning). On Wed morning he rang me to say he'd been sick a couple of times earlier. The prev 2 mornings he'd also been sick but that had been black - blood, we'd presumed it was to do with the operation & no-one at the hospital had indicated any concern at all. This morning the sick had just been 'normal' sick. The doctors had done their ward round & told him he'd be having a scan (they didn't say what for & Martin, being Martin, didn't ask). He was put on nil by mouth. At 4.30pm a nurse told him he would be having his scan at 9.45am the following morning & would be nil by mouth from 12 that night. He reminded her he had been nil by mouth all day - she replied Oh & walked off.
At visiting time I found him very low, he just lay on the bed with his eyes closed the whole time. He said he didn't have the energy to open his eyelids. He ate a sandwich & a Magnum ice lolly I'd brought him. I asked the nurses if I could speak to someone to get an update on Martin. They asked Martin who? They said they'd send someone over. A nurse came over to us, I asked her if I could have an update on Martin, she told me I needed to speak to a doctor. She told me the doctors would be doing their ward round shortly so hang on & I could ask all the questions I needed. Visiting time is 7-8pm. They rang the bell at 8pm, I waited until 8.30pm. It was just starting to get dark, I had a 75min drive home so I told Martin I was going as I couldn't wait any longer. The nurse I had spoken to had finished her shift. The next morning when Martin rang me he told me no doctors had been round after I'd left. When they came that morning they told him they wanted blood cultures. (again they never said why & Martin being Martin never asked). He went for his scan, it was an ultrasound & the person doing it told him they were looking for any fluid buildup that might need draining but assured him it all looked fine. By mid afternoon Martin chased the nurses to find out when he was having his blood test, someone came within 1/2 hour to do it. Tea time he asked when he was to be allowed home, the nurses told him they had all his p/work ready & just needed a doctor to sign it off.
I got there at 7pm. He told the nurses that he would be leaving with me at 8pm so if a doctor wanted to speak to him he had til then.
Well, all of a sudden we weren't invisible any longer. A nurse came & told us that unfortunately none of Martin's surgeon's team were on that night but another doctor was coming to see to discuss the scan results. 7.35pm a lady doctor arrived, she told us that there was a little bit of fluid but just what they'd expect so nothing to worry about, the blood test would take 3 days for the results so nothing she could say about them, she said Martin's temperature had been up & down over the last few days, it had been ok that day but they wanted to keep him in overnight again. Martin said he didn't want to stay in overnight again. She said she couldn't discharge him herself, she went away to see if she could contact Martin's Registrar.
At 8pm Martin spoke to a nurse & told her as it looked like the other doctor wasn't coming back he wanted to sign whatever he needed to. The doctor appeared, she said the Registrar had said he wanted Martin to stay in overnight & if his temperature stayed down over night he would discharge him in the morning. Martin said no he was going home now. Another doctor was sent to see us, basically said the same thing as the lady doctor, Martin confirmed he was going home. The doctors went. Martin signed the paperwork & then asked when he should make an appointment with our GP to have the stitches removed. The nurses all looked at each other (he had been transferred to this ward on Monday morning), they asked him what stitches? He told them the stitches from his operation, they quickly flicked through his notes looking to see what he had had done, they didn't even know he had had surgery!! No-one had looked at his wound since Saturday.
They asked him to go & lay on his bed & I watched them remove the dressings, clean up the wounds & redress them. I was shocked by how big the scar was, we were under the impression the scar from last years operation was going to be reopened but this wasn't the case.
He is home now & what a relief this is. We will wait til mid week & if we haven't heard from the Chemo Consultant I will chase them up.
Thank you for your response & I send you my love. xxxx Mandy
