Home again. All went well. As the surgeon said the op was “very boring but that’s the way we want it”. She had a visual check and a feel of the liver and bowels and all seemed ok there. Everything removed has gone to histology but as it all looked ok it’s on a routine request so it’ll be at least the end of the week before I get those results. No more smears - ever!
Strange to say, but I had quite a good time in hospital. The other 3 ladies in the bay were lovely - even if the son of the lady next to me did get me my first ever detention at school! We had to keep telling each other not to say funny things as it hurts too much to laugh. It is good to be home though and I’m looking forward to a night with no phones ringing etc.
Good vibes going G’s way.
Di good luck with the scan and I hope that you get your appt soon Theresa.
Looking forward to being very lazy for some time.
Nicky xx
Good evening SRs,
Sorry I’ve had no time to do any writing as I’d hoped as this is possibly the busiest month (ever) at work with a big training day on the 28th for researchers which I’m running, after which I hope to be able to breath a little again.
It has been a relatively quiet weekend - just went off to possibly the smallest agricultural show in the country. It was held in the Phoenix gardens and grounds of St Giles Church near Tottenham Court Station. In two small areas of green the organisers managed to fit in: falconary displays; fancy pidgeons (they looked more like chickens); morris dancing; Punch and Judy; farm animals (including a pig, two sheep, Shetland pony, and guinea pigs); and various food stalls. When we first arrived we went to the front entrance of the church - but this was obviously the wrong one as the place was filled with homeless people (mainly men) all having their lunchtime meal which was being served from a large van in the front. It only took us a few minutes though to retrace our steps and go down Stacy Street and to spot the rows of handmade bunting (a church group makes this) ato find the right entrance to the show.
I’m seeing the plastic surgeon tomorrow to plan the revision surgery I need and then Tuesday is the second session of CBT for the hot flushes.
Glad everything went okay Nicky
I hope you survive Manchester Val
And I’m thinking the best possible thoughts for you this week Di and Theresa - hope the results are as normal as can be.
Victoria xx
Morning girls…Victoria you sound one busy lady…what is the revision surgery, if you dont mind me asking…nosy thats me.
Carole hope the seroma starts to go down somewhat, and that your expansion/s are feeling ok too. Good luck with your re-doable expansion in November!
Di…I hope the MRI goes ok love. Have forgotten which date exactly but think its this week. And hope you receive your results fast.
Theresa its not good that you have to chase these things up, but at least you should be having your scan and hopefully, results pretty soon…
Nicky love…you rest up now and enjoy your time off work. It all sounds very positive for you…big cheers for that! Hugs and good vibes winging there way to you ~~~~~~~~~~~~~~~~~~
Sandra…you are sounding one busy lady too…although I guess that will slow down a bit as the year goes by. Does the market close for the winter? Would love to have my brains picked about teaching at the next meet, but dont think I’ll be very up to date. My sons already telling me stuff thats changed!!! Mind you it happens continuously …
Well I finally got a date that ‘finalises’ my teaching service. Its 30th of September. The head wants me to come in to school to say final goodbyes…although having said that she also asked me if I wanted to come and listen to children read when I do retire! Well I might, but not at this moment in time.
Its mine and OHs 35th wedding anniversary today! I did put on the card, heres to the next 35yrs hehehehe that would make me 90 and him 91, so you never know…my dads nearly that now.We might be going to Liverpool on Thursday to watch a play and stay overnight …nothing concrete yet.
Its also my daughters 32nd birthday! Yep,she was born on the same day. I still remember OH handing me a bunch of flowers, while I was squeezing his hand painfully tight, cos I was having labour pains…funny the things you remember eh!
to all those not mentioned, and there are a few, have a really great week!
Catch ya later
Helenxxx
Congratulations Helen…xxx
Still no call back from the appointment people so I will call them again later…
Nicky good to see you home - hope you are having a rest today… x
Victoria - hope the hospital appointment goes well… x
Theresa x
Hi all
Congratulations to you Helen!! Great to see you back in one piece Nicky!! Carole - I’m sorry that pesky seroma has caused you so much hassle, you never do anything the simple way do you love?
Now…I’ve lost track of what else I’ve read. Hugs to anyone who needs them - I guess that’s just about everyone really so GROUP HUUUUUUG!!!
Now it’s me, me, Me. I got myself another pesky dose of cellulitis on Friday - just 6 weeks after the last lot - as my Facebook buddies will already know. For anybody who doesn’t know what that is (and I didn’t) it’s a severe infection of the skin (all layers, not just the top). It seems the problem is my nipple was so cremated by rads it keeps cracking and then bugs get in. Then because the tissue in my boob is so damaged they throw themselves an Ugly Bug Ball unhindered.
Literally in the space of about an hour both times, from being perfectly well I went very cold, shivery and feverish and my boob swells, hurts and goes bright red & hot. Obviously the first time it happened I thought IBC and panicked as my boob looked just like the strawberry described by Theresa. But then the swelling, heat and redness starts spreading down my stomach, my fever gets worse and before you know it I’m in a bad way. Fortunately this time I managed to avoid hospital by seeing the doc within 3 hours of it starting and had mega-doses of antibiotics to take at home (plus it was still confined to my boob when I saw him), but really I think I should probably have been admitted because I was really unwell on Saturday in particular and actually it was a worse ‘do’ than last time. Very painful.
Anyway, on the mend now although still very red, sore and swollen and not feeling too chipper. So that’s another week off work - I never thought I’d be 43 and in poor health, they’ll probably sack me soon. I’ll be at the docs on Friday for some ‘just in case’ antibiotics to keep at home as it seems once it happens the likelihood of it coming back is quite high.
The moral of this story is don’t get cellulitis ladies, it’s not fun!!
Sorry for the self-indulgent rant after such a long absence. I am shameful - but I really do, for my own mental wellbeing, need to not be visiting a breast cancer site every day at the moment. I know a lot of you feel the same way to various extents - and I see most of you on FB or speak on the phone so I haven’t disappeared.
Gennie {{{hugs}}} so sorry to hear that you have been in such a bad way I do really hope this is not going to keep happening to you…
As you say I am coming on here less now - have been thinking to myself how can I move on if I spend so much time talking to people about BC… It’s a weird one at the moment though as I am going to the Newcastle Younger Women’s forum later this month…
Theresa x
Congratulations and Happy Anniversary, Helen! Hope you have had a lovely day. Congrats on the retirement date too.
Glad to hear that you’re home, Nicky.
Hope you enjoy that party, Carole, and that you got the bag.
Have you heard about your appointment yet, Theresa?
[[[hugs]]] to you, Gennie. Glad to hear that you are now on the mend and hopefully that will now improve quickly. Good idea to have the “in case” antibiotics
I imagine the cake was well received for the first day back, Sandra!
Thanks to everyone for the positive vibes for my friend.
I have finally had both blood test and scan results and while neither are bad news neither are they what I’d hoped. The CA 125 is up from 9.5 to 14.29 so I have to have another blood test next month. The scan showed that my ovaries seem fine but that my endometrial lining is 11mm. At the time the radiologist said that it was thickened but in line with what she’d expect on tamoxifen and that it would be good to keep an eye on it, which the study scans will do. But the letter says that I may wish to discuss with my GP whether any follow up is required. They copied in my GP and as she is on holiday one of the others asked reception (not my favourite people at the surgery as you may remember!) to say I might want to make “a routine appointment” with her when she is back. I don’t really, because from the conversation I had with the radiologist I thought it was okay. Part of getting make some semblance of normality in my life is not having to see my GP frequently and I don’t view appointments with her as “routine” in any sense! I’m almost regretting joining the study …
Love to all,
Eliza xx
I can understand how you feel about that Eliza. There’s no such thing as ‘routine’ any more really, is there? When routine once turned out to be the worst then we lose our blissful ignorance/innocence I think.
In one way it’s great that such a close eye is being kept upon you, but if it’s going to be leading to additional worries and false panics periodically then there are psychological well-being issues to be considered too. I admire you for taking part.
Hello everyone,
So sorry I haven’t posted for ages. Think I am mostly in Normality now. I went to look at buying a car yesterday (a red mini, and I did!) and had to wait for the salesman while he was busy with a youngish couple. The woman was wearing a headscarf and looked as though she was on chemo. I thought “that was me this time last year” and, oddly, I felt quite detached as though it had all happened to someone else. A friend of mine from school has found a lump and is at the hospital on Wednesday. Please send positive vibes for her. We all know what she is going through, don’t we?
I am back at school full time now and feeling quite good. My boss is still off though (hooray), and as I was on a phased return, we have a temp head from another school. We get on really well and she has really helped settle me back in.
Gennie and everyone else who is feeling bothered and with problems and those who have punctured things(!) am thinking of you all.
Val, how long are you in Manchester for? I would love to get over one evening if I could.
And Helen, you are coming to Liverpool on Thurs! Any chance of a quick cuppa somewhere? What play you going to see? Happy anniversary to you both.
Oh, Victoria, love your holiday diary.
Right, some of us have got tracking data to scrutinise… Hope your new term is going well Linda!
Love to all, will read all the posts and write more at the weekend. Anyone still up for a northern meet?
Sheila xxxxx
Good evening SRs,
Sorry about the cellulitis Gennie - hope this is the last time you go down with an infection of that kind. When I had a chemo burn on my arm the doctor thought it was cellulitis at first and it was excrutiatingly painful so I do empathise.
Sorry the CA score is going up Eliza, I don’t fully understand it, at least though you have the option to follow up. Just what you don’t need though, something new to think about.
Glad you are more or less in normality Sheila and that things as going well in the classroom.
Very happy wedding anniversary Helen, 35 years is a real achievement.
Still thinking of you both Di and Theresa.
Pleased you are home again Nicky safe and sound.
Very glad the seroma is healing Carole and hope the expander exchange goes without event.
Well I went off to see the plastic surgeon today and I thought I was was just going to have the implant changed (which has shifted) - but turns out he needs to put a stratice in as well which will keep the new implant in place. He also want to re-do the uplift the otherside because of problems with the scarring as well as the shape. It does certainly sound extensive than I first thought and looks like a five night stay in hospital.
I’ve also had a call back to the GP as my blood test isn’t within range for vitamin D levels - being too low despite taking ADcal D3 twice a day. So going back to see what he proposes on Friday. I’m taking the Adcal because of osteoporosis induced by the Zolodex.
Thinking of you all.
Victoria xx
Morning all,
Wow 35 years, Big Congratulations Helen and Steve!! Sorry you’ve had an upset Gen but hope that’s the last, sounds nasty.
Eliza I too admire you taking part in the survey, I am part of a survey re radiotherapy, can’t remember the name but it’s been just form so far and an annual check.
Only a couple of days until the MRI on Thursday, OH not too impressed as it means a trip to Swindon where they have a new open MRI where hopefully I wn’t freak out! I’m still convinced it’s a trapped nerve so am not worrying too much but would like confirmation. Hope yours is sorted soon Theresa.
Hope you are going on okay Nicki and managing to rest up, and you too Carole. Still looking forward to your USA Tales when you get time Victoria, sorry to hear your ‘procedure’ may be more complicated than you hoped.
Anyway, love to all - thinking of all of you riding out in Normality but keeping the coffee hot should you need to drop into Haven, Di xxxxxxxx
Hi girls…Di good luck with your MRI love…things are always progressing arent they? an open MRI sounds really good. Lets hope they let you know the results pretty darn quick!!
Sheila…we havent booked as yet…but will let you know if its a definite…I’m sure OH wouldnt mind if I left him to roam round Liverpool for an hour or so! Would love to meet up, if its happening…will get in touch later.
Victoria…your revision op, does sound like you will be having a longer session in hospital than you thought. Hope you receive your date sooner rather than later.
Gennie…poor you love. Sounds like the gremlins went to work on you with a vengeance! Never had cellulitis, and certainly wouldnt want it. Hope you dont have to go through it again…
Hey there Eliza. I was asked by Bc nurse to join a study last year. For selfish reasons I didnt. My thinking then was not for others, but to try and get some normality back in my life. Strangely enough I did feel a little guilty over feeling that way. As Gennie said, I admire you for going ahead with the study…give yourself a pat on the back and think of how you ‘are’ helping others. But Eliza also, know that your life is your own and important too, so if you make the decision to pull out…its a positive thing that you have done, for others…dont feel like you shouldnt!
I mentioned earlier that my gp asked me to start a diary about the lightheadedness episodes…well dont have to (as yet), cos I havent had any like I had in my holiday week. I’m sure it was just tiredness, and I havent been on the go like that since…so hurrah, no diary to keep!
take care all
Helenxxx
Gennie a big ouch about the cellulitis. It sounds like a good idea to keep the antibiotics in.
Congratulations on 35 years Helen and good news that you’ve not had to keep a diary about the lightheadedness.
Eliza - I don’t know what to say. I’m part of a study about diet and I was told that most people end up pulling out before the end.
Di good luck with the scan.
Victoria I don’t envy you a 5 night stay in hospital. Any idea of when all this will happen?
I’ve slept a lot since being home. I’m still feeling very nauseous and not eating and this morning seemed to be running a bit of a temperature. Fingers crossed it’s just a blip. I have to go back to the ward this afternoon to have my stitches out. It’s about a 50 mile round trip and I hate having to ask a friend to take me.Not driving really makes me feel stranded. I’m getting bored already as I really can do nothing. I didn’t anticipate how frustrating it would be. Enough of my moaning - it won’t be for ever.
Take care all.
Nicky xx
Thanks, Gennie, Helen, Nicky, Di & Victoria! I will probably keep on in the study but it is making it more difficult to move on. I’ve worked out that since February there hasn’t been a single month when I haven’t been waiting for test results or just received a letter saying they need to do more. It is interesting that so many people seem to pull out of studies. I don’t want to as it does in some ways “spoil” it and the study people are really lovely and so grateful, but Helen & Gennie, you do make very good points and I think I need to keep it under revision.
I can really empathise with the not driving thing, Nicky. I always have a load of books waiting to be read so boredom isn’t an issue for me, but being dependent on other people is something I find a real problem. Probably a good thing that you’ve been sleeping a lot.
What a pain, Victoria, it looking like more extensive surgery than you had thought. Do you have any idea when it is likely to happen? Hope you get some answers on Friday too.
Helen, it really does sound like you just needed to slow down and the lightheadedness was your body telling you that. Good to hear that it hasn’t been happening since.
Positive vibes for the MRI, Di. Swindon is a bit of a trek but I’m sure it will be worth it to have the open MRI.
And vibes for your friend too, Sheila.
Love to all,
Eliza xx
I’d try to make a Northern meet too.
Love to you all who walk the road we wouldnt choose.
Val[TOO]
Hi girls…just a quickie. Sheila have sent you an e.mail about thursday. Eliza you see how things go for you missus…any decision is the right one! Nicky hope your recovery continues to improve, it must be because you are bored!! Di good luck with your MRI. And the same to anyone else waiting for results or having a backward step in their own recovery!
My ex-deputy retired at the summer, and she rang me up last night to see if she could visit. We are going for a walk…nice to go with someone else for a change. She’ll be here at 10am.
Oh yep OH and me are going to Liverpool tomorrow to celebrate 35th…and seeing the new musical by Willy Russel…he wrote Blood Brothers. I think his new one is called 'My day out,.
catch ya all later
Helenxxx
Hello you lot … not been on here for ages … think most of us are using this thread a lot less. I’ve absolutely loved being on here with you all, but I must admit that the only way I can get peace of mind with the whole bc thing is to think about it a whole lot less, which means keeping my distance from anything to do with the dreaded subject.
I too was asked to join in studies and trials, Eliza, but after I’d spent practically every Friday visiting the hospital for 8 months having my back ‘sorted’, I didn’t have to think twice about saying “thanks, but no thanks”. Did get a bit of a guilt trip, but enough is enough, and if it’s not right for you … run!
Get those books out Nicky, I’ve loved all the reading I’ve done in the past 2 years, and still have dozens of unread treasures. But I agree with you not wanting to do the class reading thing, Helen, that sort of book reading would probably start the head fuzzing over again.
I think we have to get to that stage of being selfish after all of this slog, and think ‘me, me, me’. We have deserved it you know. Not that I get too much ‘me time’ with littlelegs here, but I absolutely love having her, and I guess it’s the best ‘me time’ I could possibly have.
Anyway, I shall be dipping in from time to time, but will mainly be using Facebook, like most of us now.
Love and hugs to all, xxxJacqxxx.
I do not believe the conversation I have just had with someone from the xray appointment dept…
They finally replied to my call (i called again yesterday and left my name and number on the answer phone…) They said that the ct scan had been cancelled… why? Because the doctor who looks at the requests and decides how important they are has decreed that I don’t need one…!!! How on earth can a radiographer decide an oncologist is wrong about wanting to find out what is happening with someone’s liver and neck!!!
I’ve phoned my onc’s secretary but it is clinic day so i guess i won’t hear anything until tomorrow when she hears the message… Am just so upset and speechless it is 3 weeks today since I saw my onc… when exactly were the xray dept going to let me know they had made this decision…?
Theresa x
Theresa,
I am absolutely staggered to hear what they are putting you through and I do hope that your Onc’s secretary kicks some serious butt - because that’s what needs to happen. Its hard enough that you’ve had to be patient for so long, but for this to happen when you were nearly there is just the absolute limit. I’m sending a HUGE hug, but also offering to ride shotgun when that butt kicking needs to be done.
I know that there’s lots I should be remembering, but my crossed-ness has put it all from my mind. So, just sending love to all for th moment and will be back to do it properly (and hopfully see better news from Theresa soon).
Debs xx
Hello ladies,
Hope you don’t mind me posting on your thread but I saw Theresa’s last post and was so mad… I quite agree, how can a radiologist reverse a decision your onc has made? I work in a hospital and the only time this happens is when the radiologist thinks a certain test would be more suitable than the one ordered by the doctor. But you should have been informed about it, not had to chase it up yourself. I strongly advise you to contact the PALS dept at your hospital if you don’t get a satisfactory response from the secretary tomorrow. And, if you’re not satisfied with her response, you can ask for either the onc or someone (medical) in his team to contact you. Blo**y hell, we have to go thru enough rubbish without stuff like this happening. Hope you get a positive outcome.
And hi Jacq, hope you’re good, will pm you shortly.
Take care ladies, your thread is very, very good reading.
x