Well I’m back home having been discharged this lunchtime and been given 10/10 for climbing up and down the stairs by the physios! It sounds as if it has been a really really bad few days for us “liver birds” (like the name a lot!) and IT’S JUST NOT GOOD ENOUGH!!! It’s about time someone had a change of luck …
What can I say about my op (or “non-op”)? The prof was very clear and honest with me beforehand about the possibility of not being able to continue - if I remember right, 8% chance of something showing up on the laporoscopy and then a further 5% chance of something when he actually opened me up. Sods law that it was the latter - now have a wonderful incision with so many staples it looks like a zip! He did take a gallstone and my gall bladder out though whilst he was “in” which might help with the indigestion! He was absolutely brilliant but clearly upset himself - all the staff actually were really good and supportive. And despite everything, I don’t regret going for the surgery - still feel it was my best chance of lasting longer term.
Anyway it was not to be so it’s back to the onc sometime soon to have more chemo probably (not sure what? Any thoughts?). They can’t start that though for 3 weeks or so as they have to give me time to heal. And I could do with a little time for taking stock of the new situation - David and the children are also having to make big adjustments but I’m really proud of how they are handling it. I woke up on the Wed evening though to hearing both David and ELaine (my eldest) quietly crying because they knew I hadn’t been away for long enough for the full op to have been done. The Prof was again very good and spoke to David very soon after that and came to see me first thing in the morning when I was more capable of taking things in - and could talk (it hurt too much initially because even the epidural didn’t work too well - ended up on morphine controlled by me!). Pain isn’t too bad now so long as I don’t try and reach my feet (!!) or laugh or cough.
It was so good to see you on Friday Dawn if but briefly. I’m so sorry that the news wasn’t better for you - I guessed as much when you didn’t return and then David printed off your email (never did manage to get the wireless connection at the hospital to work properly). Will try and give you a ring over the next few days once I’ve recovered a bit more. I really hoped that if the op wasn’t going to be a goer for me, it would be for you.
And have just read your thread, Tracy - you must be gutted too. Think we should arrange a meet sometime soon because cyber hugs do have their limitations. Might have to be London again though as not sure I will be able to make the Channel Islands for a while - though could really do with a holiday!!!
Sorry too, Nigel, to hear about your wife. Will reply on your other thread when I have a bit more energy as I know a bit about the surgery aspect and when it might be an option. Obviously never any guarantees though that it is an option or that it will work.
Right must go and see if I can find one of my cats who hasn’t yet noticed I’m home. One of the others has been all over me and the third is resolutely ignoring me - I’ve obviously offended her.
Lots of love to all and I’ll second Jacquie’s wish of a better week for us all
Hello sweetie, great to have you back. You sound surprisingly upbeat - but it’s easy in cyberspace to put down all the brave stuff and delete the less attractive bits, isn’t it? I am so glad you’re home, with your impressive sounding staples. Hope you’re not too uncomfortable. Just relax and let everyone pamper you. Gallstone and gallbladder sounds a bit like a buy-one-get-one-free. Also a bit like the booby prize… you poor thing. Can’t imagine waking up to the sound of your family crying! Must’ve been bl*dy awful.
I don’t like the sound of chemo starting in three weeks. It’s not long since your last lot. Is there nothing else they can give you? Can’t remember if you’re triple negative? Yes, it will take at least a few weeks to adjust to this news, you have to get your head around a whole new reality don’t you?
Yes, I think another meet is definitely a priority. Tracy, any chance you have a dentist’s appt in London in Feb or March???
Much love to you Kay, and everyone else
Jacquie xx
lol yes im sure i could make one !! seriously tho you tell me the time and place and i will be there , i have had to cancel so much with this bloody disease i am determind now . so glad to see you back kay bit so sorry you didnt get what you wished for , it sure has been a week for us liver birds (great name ).
i am numbing my woes with more red wine lately (i bet it will show in my bloods tomorrow , readt for chemo thurs ) yikes .
well bye for now and healing hugs kay
love Tracy xxxx
Glad you are out of hospital- wow you are quick -I didn’t think you would be here in cyberspace with the liverbirds for a bit. Well at least they took out the gallstone and the gallbladder- nice of him to try to do something whilst he was there. I am so sorry it didn’t work out…I remembered you mentioned the possibility of it not, but damn it, its all a bit much…i think I remember you saying you are HER neg, but maybe you are ER+ and they could try that?
Hi Tracy tell me where your plane comes in - I will put on my thinking hat to propose places to meet again, or we could simply recycle the old one…it would be great to meet you in person.
resurfaced from chemo 4 on thursday roughly and then been having a quiet weekend at home, OH took me out shopping to buy a new dress for a party I am going to, he earned himself a gold star with the shop assistants as I heard them say -‘thats the kind of husband we like to get, he wants her to buy something’ son behaved himself despite one protest at how long I was taking. Ended up with blue dress from coast, quite like it, and new curtains arrive tomorrow or next day - so doing well on retail front!!
Had a bit of a doze and feel better for it. It is lovely to be back home but tiring - think everyone (including the nurses) was slightly surprised by my early discharge but there was general feeling that I was ok physically (just need time to heal) and emotionally would be better at home with the family. Took David by surprise as he had arranged to go into work the beginning of this next week so he could keep the end clear to be at home with me. He’s interviewing tomorrow pm so we have an elaborate plan of different people “Kay sitting”.
I am quite “upbeat” Jacquie - one of the good things about hospital is that you have a lot of time by yourself when you can think. So though hugely disappointed and occasionally overwhelmed by it all, I am in the process of dusting myself off and facing the new challenges - different battles and possibly different time span but as determined as ever. Will definitely feel better when I know what the next stage is. The prof had phoned the onc almost immediately (and my breast surgeon who still monitors me) and reported back to me that it would probably be chemo in about 3 weeks. I am indeed hormone receptive so will need to find out why more chemo (finished last lot about 7 weeks ago) rather than hormonal treatment - have already had tamoxifen and arimidex though so it may be that chemo offers more options. Hope the onc will be in touch this next week - did have an appointment to see him at the end of Feb but really want to see him earlier.
Think the gall bladder op was definitely the booby prize - or a bad substitution on a Tesco internet order!! Having checked the internet earlier this pm though, I do wonder whether some of my indigestion etc could have been caused by the gallstone - so easy to put everything down to the cancer.
Another meet would be great and so glad that we’ll get to meet you Tracy as well. Is anyone thinking of going to the forum in London for those with secondaries who work (see other thread)? Would like to go but don’t know whether I’ll be up to it. Knowing some of you might be there might be an extra incentive. WIll recheck the thread as I think some of you may have already posted on it.
Right…time to potter up to bed I think. Keep up the good work on the retail therapy front, Cathy! And I always knew I should have bought shares in a wine company…
While I am so sorry to read your disappointing surgery outcome, Kay, I find your posts here are inspiring, and testament to how we just soldier on, no matter what is thrown at us. I hope you are soon healed and ready for the next round.
Hear hear Jenny. To be able to say:
‘So though hugely disappointed and occasionally overwhelmed by it all, I am in the process of dusting myself off and facing the new challenges - different battles and possibly different time span but as determined as ever.’
so soon after. Well, you’re amazing.
Where’s Dawn gone? Do you think she’s okay? Gone a bit quiet.
Does anyone go on the secondaries live chat? I always seem to be busy on a Tuesday (usually taxi-ing children). I went on once but that was ages ago.
We had our meeting today about our complaints. Met the Cancer Services Manager, Head of Nursing, and Complaints Manager for the Trust. It went really well I think. They gave us lots of time to say all we wanted to.
They took notes during the bits where they needed to go off and do something - eg discussion about one of the wards where the staff were dire. They have bought 3 new, better blood testing machines and they are up and running. They
are looking at ways of speeding up the mixing up of drugs. I don’t think they were just placating us - they really seemed to value our insights. They also apologised, which helps a lot.
More than anything I wanted them to look at some of the policies and procedures, so nobody else has to go through what I did. They do really seem to have questioned these and tried ways to make things better.
It’s a great relief to have it out of the way.
Well, love to you all, have a good evening
Jacquie x
Kay - you sound so ‘dandy’ - you are amazing!! I cant imagine your rollercoaster at the moment but you sound determined and I admire that so much.
Jacquie - I go on Secondary Chat each week. Was absolutely gutted last week - VirginMedia decided to cut our internet off without notification!!! Its paid by Direct Debit but then, that’s another story!! I’d say that it averages about 6 of us chatting each week. Hope that you can make it.
My news - they’ve called me to clinic on Wednesday - a little bit of panic setting in!! Hopefully, it’ll be to do with the oophorectomy …but then, a couple of weeks ago, after my scans, they didnt have my ultrasound report - uh-oh!! Will keep you posted.
Gatecrasher - nonsense!! there are no gatecrashers here ! if you are called back on wednesday well at least that is quick. Interested to see you are going for oophrorectomy, I thought about doing that myself, but ended up taking the zoladex, I wonder if I shouldnt bring that up again…
Jacquie - glad to hear that your meeting went well, I have to admit I was a bit worried for you that they would be defensive or negative Its really good that they took your concerns seriously because at least that will make it better for the next people etc. Well done on you for raising it !!! I think alot of the time they count on us not to say something because we are so pre occupied.
Finally sussed out how to post!! i am a newbie to this board but not to breast cancer diagnosed May 06 straight off with Liver secondaries (see my post for background another Liver met girl) i am 41 with two children 21 and 15.
Hi Dawn and thank you for the reply i would very much like to join your discussions i have been reading and following your posts for nearly a year and a half.
KatherineM/Cathy - I have no problems with oophorectomy being done but they wouldnt do it at first because I had just had c-section. My levels still show me as pre-menopausal so the sooner the ovaries go, the better in my opinion (Fingers crossed that I’ll be in and out in the day though!) PLUS I absolutely cringe when having Zoladex (no local nowadays at my hospital!)
Nigel - I have no problems with you joining Live Chat (that sounds awful, but ykwim) - but just be warned, the time goes so quickly!!!
Tracey - welcome - and I too, am sorry that you’ve had to join in - even though I’m a gatecrasher - haha!!!
You are absolutely not a “gatecrasher” Anne - any more than Nigel is “tagger on”!! When the 5 of us met up in London, we absolutely agreed that we didn’t want it to become a “cliquey” thing at all. And welcome too to Tracey - sorry you’ve had to join us but…
I’m doing ok - physically better every day but that’s almost getting more frustrating as I now want to do lots of things (which I can’t!). Emotionally ok as well - I wasn’t actually that shocked I’ve decided. It was much more of an “oh shit” moment. Think that was partly due to the fact that I was well aware of the chance it could happen.
Am worried about my son though - he’s putting on a very brave positive face when with me but won’t talk about it and is hiding away most of the time. One of his best friends mums is also a good friend of mine and she was saying his friends are worried about him - very surly/irritable with them. She - bless her - is going to try and have a word with him as she knows him pretty well. She’s also had bc (5 years nearly since her promary diagnosis) so knows some of the emotional rollercoaster.
Glad your meeting went ok Jacquie - you should be really proud of yourself taking the time and energy to address this and achieving so much. It really does sound as if you have made them listen and that there will be changes.
Hope you are not too stressed about tomorrow, Anne. At least you haven’t too long to wait (I just loathe the waiting) and as you say, hopefully it is about the oophorectomy. It would help though if they could give us a clue when the plans change re appts, wouldn’t it?
Might try Live Chat tonight if I can remain upright long enough - side aches after a while. Went on a couple of times 6 or 7 months ago but there were very few people on there and it didn’t quite work for me. So might chat to some of you then.
Lots of love to all - and thank you again for all your lovely comments and huge support over the last few days. I can’t tell you how much it means to me.
hi there , my plane will come in at gatwick so ??
can get the express into central london tho , so anywhere you suggest as i am not too hot where to go , will just jump into a cab and arrive .
went to town today and my legs were like jelly , the worst they have been in ages just had to get what i needed and left , felt so bad as the taxotere has done me in so much cant go far , last one thursday . then went to get some food but all my nails are off and plastered up so prefer to go to supermarkets thjat allow you to put pin in with credit card , this particular one didnt and i felt the assistant was staring at my hands in disgust as i signed , times like this you realise how sad this disease is eh .
bbl love Tracy xxx
Oh Tracy - I sympathise with you over the nails. I was on Taxol and have lost most of my toe nails but thankfully not the finger nails. They have all lifted though and I’ve had to cut them really short and they are black at the tops. People just don’t think do they when they stare? Still …what do they know? They know NOTHING.
I’m not the best person to suggest location to meet - Cathy’s the one for that I think as she works in London. Think it will have to be several weeks time if I am to join you as need to recuperate from the op a bit.
Oh goodness me I know what you mean about jelly legs…everyone saus I have been doing well with this taxotere (now done 4) but I dont tell anyone else other than my OH about the wobbly times. The worst was whenI was in a store looking at Fabric - and I thought how the hell am i going to get out of here and home ? just as you said jelly legs, managed to get home and collapse in bed! Taxotere is such a devil for me for bone aches, it effects us all differently.
Take yourself to bed, stay there for a full day tomorrow if you can…sometimes you just have to give into it.
Some people do stare at anything that is different, this is something I have experienced in another facet of my life, you just have to develop a really thick skin …easier said than done. What I have found it is obviously usually ignorant ill educated people…
BTW i will put you in as coming from Victoria when we get to making dates-
Kay hope you are getting on OK- saw your post on the photo thread