I have surgery next, seeing breast surgeon 23rd April. Have a pencilled in date for surgery 9th May but depends on what I opt for and whether my immune system has recovered enough. Radiotherapy then will be approx 8 weeks after surgery. I was then meant to have Herceptin injections for approx 9 months. Luckily my hospital have said they have just been given the go ahead to add pertuzimab to the Herceptin so the 2 will be given as infusions 3 weekly. Will never escape the cannulas 😂 At least it’s targeted therapies though and not chemo. Think I’ve been lucky to get chemo out of the way first. Thanks for asking and take care. Will keep checking in on you ladies, you are an amazing wonderful supportive group for each other. I think Chemo 3/4 can be a bit of a low point because you are feeling the effects of the build up. You will all get through this though! This too shall pass and I don’t think any of us will take any **bleep** from anyone after this. Take care xx
Nettienoo that sounds like a nightmare! You poor thing. Sending massive (but gentle) hugs xx
Daisydi sorry you haven’t had a good day. Sending a special hug. Hugs for you too DiKat. Well done for getting through. I bet it feels great to have some hair coming back. I think we will all be looking forward to that. Xx
Nettie it sounds more like they were wasting YOUR time faffing about doing unnecessary things, than the other way around.
So sorry to hear you ended up back in hospital again! try to take it easy and stay at home tonight, please? xx
Whoop! Go DiKat!!!
thank you so much for popping in here as a voice from our future, it's really appreciated.
Great to see all that hair coming back already And I definitely like the sound of the back half of the treatment passing quickly....
Best of luck with whatever you still have upcoming - are you on to radiotherapy next?
I missed a cake photo? nooooooo! MBJ it looks like you live in a lovely part of the country and what beautiful weather. Implausible I’m sad that you are feeling a bit neglected by your Onco. I think mine is going to start hiding from me soon! She probably thinks I’m the most awkward patient she’s ever had. I felt worse as the evening wore on yesterday. Sky high blood pressure and heart rate. Cold sweats, felt faint and sick so ended up back at A&E from 9pm to 2am. Same scenario as day before really. As soon as blood results came back ok they wanted me out. I am thankfully feeling better today after having slept most of the day. So still have no idea what the problem was. Maybe I was fighting off a virus or something. Sore hand and arm where 2 nurses tried a total of 3 times to take blood and then someone thought I should have a Canula in before the blood results came back just in case and it took a doc 3 times to get that in. I was hanging over a sick bowl at the time and the doc had bad BO! Not pleasant. If they didn’t think I was a time waster on Tuesday, I’m sure they do now. ☹️ X
Yay DiKat! Congrats on reaching the finish line, so pleased for you. Thank you for your advice and good luck for the next stage of your recovery. X
you're all amazing!
Just feel so lucky we have each other to moan at. Dont know what I would do without this lifeline.
Yes Marlyn, I'll be more careful about my posts in future 😂
How rubbish that you've had no other contact from nurses. Feels like sometimes we're just left to get on with it.
Just feel so lucky we have each other to moan at. Dont know what I would do without this lifeline.
Seaside...you mean they took off the lovely pic of your Vicky sponge??? How odd!
Talking of the bc nurses, I have only spoken to mine once and that was when she called me to tell me I needed chemo, not had a peak out of her since.....not a bean....nada....nil.....zero.....
Sarah my bcn did phone me once after the first chemo but when I started talking about side effects and things she just said phone the onco team about anything you are worried about. Im not one for keep phoning as I know they are busy but just a little bit of reassurance would be nice. Ive not even been to my GP since this all started apart from trying to get blood done. Well moaning over, onwards and upwards ...
Daisydi that's exactly it
I had SO much support from finding the lump through to starting chemo. I saw the surgeon loads and, like you say, the breast cancer nurse used to phone up to see how I was etc.
Then since chemo started, nothing. And this is the bit where I need the support because it's
Bloody horrid! Much worse than the surgery.
I think I'm the same as you, because my bloods have been ok each time and I haven't had any really nasty (in the grand scheme of things) side effects that would require a change of dose, they just let me get on with it.
But it would be nice to at least get a call from the BCN just so I could have a little whinge about how much I miss my hair or how rubbish week 1 is or how I can't stop eating cheese toasties and I'm turning into a balloon.... I didn't realise she would drop me like a stone as soon as chemo started.
Hope you feel better soon x
Which post Sar? The one with the lovely cake????
Charming indeed Sar. Flippin cheek. Gosh I do seem to be angry today!!!! Sorry Im ok really just want my life back x
Well here's a strange thing...just had a notification that my post from this morning was marked as spam and has been removed. Charming!!
Sorry you're feeling rough Daisydi. Hope you feel better soon.
I've also only seen my oncologist once since starting chemo. My next appointment will be the week before I move over to T.
Evening all been feeling very strange today and has only just got the energy to type. I have been freezing all day and now Im really hot. Just to butt in I have not seen an oncologist since I started chemo. I saw him once when he told me I needed it and I said I didnt want it and he said well I am advising you to have it and I didnt like him then. I get to see him before the T starts though but I doubt he will be interested. I feel quite let down by the oncology team. When I was going through my various surgeries I was phoned by the BCN and checked up on. After being fed with loads of poison and going through what is the worst time in my life I have not had one call to see how I am. Because my bloods are usally ok I just get asked if there are any problems and I tell them I have bladder problems and feel sick but they just carry on with the next lot. I do get the impression that they are under a lot of stress in the unit though but then thats not my fault. Its the norm for them but as someone else said this is new and evil to us and I wish they understood that and were more supportive ...
I mean they ask in a very general "hi, how are you getting on?" kind of way. But no specific questions.
They are lovely, the nurses, and if I had any concerns they would address them I'm sure. I never think of anything to ask while I'm there just give my bloods and swan off....
I'm also in a private hospital edwaccess ..... I think the main problem is that my onco has been injured so he can't drive at the moment. Although he never intended to see me every cycle, I don't think. But he did originally say he would see me before the switch to T.
Implausible , I'm a private patient too and have chemo in a private hospital
I have bloods taken by chemo nurses on Tuesday mornings before each chemo, see the onco consultant in person on the Wednesday morning before every chemo (when bloods/SE/anything else are discussed) and have chemo on Thursday morning
does the nurse ask you how you have been? Sleep, appetite, aches and pains? Do you get to ask her anything? I wanted to know about air travel once therapy was over. The oncologist said it was entirely up to me and how I felt. I also have told her about my hiking.
Implausible.....well....that kind of makes sense as mines a mop up insurance too......huh.....
Rosina - I'm not NHS, I'm private (paid for by my work's health insurance) - so they would even get paid well for seeing me! You'd think it would be worth their while to make the time
I do go in for blood tests the day before each dose but that's just with the nurse. I could ask her there if I had any questions I'm sure but it's not the same as a proper consultation with the doc. I tend to just go in, get bled and leave....
and I wouldn't always know the right questions to ask?
I have to put a spanner in your theory, as I had a mascetomy so hopefully the germlin went with it. I have only got surgery as reconstruction went pear shaped with infection ect... so will have that and my orvaries out later this year.
sorry your still struggling to get your refund for your holiday.
Good job your checked your meds, They couldnt stress enough about taking them at set times, even the pharmacist stressed stressed timimgs.
Glad you got your refund on your holiday. Happy cold cap will be shorter that last 90mins is a killer.
Glad you had a sucessful wig appointment, i cant believe they send them to try on at home, my wig lady was very protective of her wigs, but i also felt she was trying to sell too much. Thankfully all worked out and it was died and cut to my old style and have alovely hair style sitting waiting for me on my shelf.
Rosina, your walks always looks lovely, and yours too today MJB
I also felt my surgeon who was very matter of fact, was much more approachable than my oncologist, maybe it was because i saw her each time not just members of her team.
With talk about ECG's ive never had one, i have had a CT and bone scan, but not an ECG.
Trixielady, the nose bleeds could be hormonal with everything they pump into up, I suffered terribly with them when I was pregnant.
Im on my good week, but like a few you have said I get so tired doing normal things. I powerwashed the garden earlier in the week and think i might have over done it, and had to come in and do nothing for the rest of the day. Impausable you made me look at my Iwatch to check my heart rate, Im running much higher than I was pre treatment, hadnt thought to look earlier.
You ladies know I like my comics - an artist I know just posted this up - I didn't realise his mum had been diagnosed.
I actually found this quite a comforting little read (it's only short - one page) - as my two adult sons have been so tight lipped about my situation - they basically just asked me right at the start "are you going to die?", I said no, and they've barely mentioned it since! But I'm sure it must play on their mind a bit. I imagine they are dealing with it similarly to Joe.... concerned but trying to stay positive and not to worry me by going on about it.....
Hi Implausible and Susie B,
Your posts are very interesting.
I see the oncologist (in person not over the phone) prior to each chemotherapy dose. My blood gets done on this day too ( a Monday).
She asks me how I have been, side effects etc and then once she has my blood test results I get the go ahead for my next dose.
She also writes a summary to my GP and I get a copy of the letter.
I next see her on the 15th.
I am having chemotherapy after surgery, so I am stunned to hear about what is going on elsewhere!!!
My lovely chemotherapy nurse and the oncologist both made me aware of the fact that I will need to take steroids a day before T starts and this has been labelled on the medication with the date and dosage.
Sussex and Surrey NHS trust have got an ‘outstanding ‘ rating , so reading about what is happening elsewhere is really making me appreciate the treatment I am receiving!
I continue to be flabbergasted,
I would certainly be speaking up in your shoes.
to be fair it isn't my insurers who are the problem - they have said they will pay up as soon as I can provide a cancellation notice and/or a no show letter from each of the airlines (there are 4 different airlines involved) for each of the many flights.
because otherwise who is to say we didn't use them, I suppose- so that's fair
but the airlines keep fobbing me off and sending me back to Expedia - the site I booked the flights through
and Expedia keeps sending me back to the airlines!
I have spent literally hundreds of hours on the phone trying to sort it
I think had it been a normal package holiday it would have been 100 percent easier to sort....
Oh Implausible that really is the pits especially since this is at a time when we are probably at our most vulnerable. I'm sure many companies think we'll just give up eventually. To be fair my ins comp (Tesco) couldn't have been more understanding and helpful.
Regarding the onc appts it could be that because Edinbird and me are having chemo first we are seeing our oncs before each chemo session, the notices could be for everybody to book their next appt no matter how far ahead it is, so your theory is likely to be correct. After my 1st and 3rd sessions my onc had a good old prod around to feel for Gremlim. On both occasions I had to point him in the right direction↘️. Most odd.
Aha Susie, by the time I posted my theory you had already disproved it!!!
I'm jealous of your insurance result on the holiday. I've been arguing with mine since January and still haven't seen a penny for 9 of the 10 flights. The 10th the airline refunded directly. So I've got £124 back out of nearly £1800 so far. Sigh.
Blimey Sonia28, definitely not looking forward to TC after surgery☹. Yet more meds to take. There is one good thing though, time with cold cap is less with T. Still have to do 30 mins to start but the nurse who did my PICC care yesterday thinks I'll only spend 40 mins after chemo finished☺. Just trying to find the positives.
Thanks for the info Sonia. I did have an extra pack of steroids in my meds goodie bag this time around and noticed as I was putting them away that they say to start the day before next sesh. But nobody actually pointed them out to me. Good job I noticed
And Edinbird I think you have actually solved the mystery. Can tell you work with the police When you said that he needs to see you to see if the chemo is working, a little light bulb went off in my head. I bet that those of you who are having surgery after chemo see the onco more because there is actually something for them to monitor.
In my case they can't tell if it is making a blind bit of difference as the tumour is already gone. It's just mop up insurance.
So I guess there is less for them to do....
Had a successful session with the wig lady - sorry that's what the bc nurses call her - and have selected several wigs in different colours. They'll be posted to me so I can try them at home and hopefully chose one I like. The ones I want to return I simply take back to my unit, which won't be a problem as I'll to return each week for PICC care. If the one I like needs a trim the wig lady will do that too. One thing she did tell me was that even though the wigs are synthetic I could put a bit of gel or wax through it as a one off between washes. Handy to know for Sat so long as I'm well enough to go. Another success today, our holiday insurance has come good so we get all our deposit back less our £20 excess. Result😊. Problem now is that with all the positives since the weekend I'll be waiting for another downer. In some small way I do feel that we're still on that Barrying roller coaster only slightly less scarry.
On the onc appt front it is strange that we all seem to be treated differently. I see my onc before each chemo session which I think is the norm here as there are notices around the waiting room reminding us to arrange our next appt before leaving the unit.. As I'm on a trial one of two trials nurses attends too. Not sure if things will be different when I'm under the care of the surgeons. I met one of them when I first transferred across to Yeovil and he seemed fine. My husband has also been told that there is a female surgeon who lovely too, so fingers firmly crossed🤞.
Loving all the photos. Just going outside in the sunshine🌞 to dead head some very sad looking daffs, forgive me if I don't take photos. How did daffs just morph into drafts? You really have to watch this predictive stuff😠. Be back later. Love you all. xxxxx
I see someone from oncology, not Necessarily mean my consultant the week before every chemo, although this time is was a week earlier due to delay last session.
I was told to stock up on Analgesias due to the pains you will feel after the session, and to take these earlier rather than later.
( keeping an eye on temp)
I’ve got steroid to take the day before, day of and day after at 8am and 2pm. If I don’t take them I can’t have the chemo as these help stop me having a reaction to the Docetaxel. (T) 😣
I think that’s about all she told me.
Well my walk was lovely, although I was rather breathless at times. It's the furthest I have walked for months and the most uphill. The weather is glorious and just being out in the fresh air was wonderful. Here are some pictures, we even saw really new born 🐖 lets. Soo cute but a bit smelly😁.
Hi Implausible and Marlyn
I found exactly the same the surgeon was excellent always available, would disvdis everything. But oncologist I found so different no discussion just oh you have come for chemo these are the side effects bye. Well we know how well that worked out NOT!. Even when I went to see him after my sepsis there was not much discussion really I think that is why I have been so unsettled with my decision to stop.
We really have to be our own advocates to make sure we get what we need and are not palmed off, just lok at Nettienoo'' experience in AE this week.
I think the that sometimes the professionals forget how stressful going through cancer treatment is for the patient after all to them it's a days routine work but for us it's our bodies and our lives!
I always find it fascinating and often frustrating how different our experiences are. I’m seeing my oncologist before the T starts because he needs to tell me if the chemo is working and confirm the next stage is still appropriate. I feel very fortunate I have the top doctor at my hospital and so his time is very precious but he’s always getting updates on any issues I’m having and asking others to assess me etc.
My surgeon is senior too, I wonder if I got lucky or if it’s because I’m triple negative? Who knows. Everyone in his team has been great so far too.
Risked a burger with my friend just now... asked to have it well done... I’m sure I’ll be fine but there’s always that paranoia!!
I'd rather have had a face to face but a phone call will have to do - I don't think they would even have offered that if I hadn't chased it up though.....
I used to be in seeing my surgeon every 5 minutes so I figured it would the same with the onco - I think it helps you trust them if you see them enough to build up a rapport.
Probably would have been different if he hadn't had his sporting injury, but you'd think a different doc would step in?
Totally agree with you implausible ref seeing the onco...
I had to request an appointment ( which is tomorrow) at my last chemo session, I was flabbergasted that I had only seen him once ( aweek post chemo one) surely they need to have catch ups? I have a long list of side effects that I'm biting at the bit to tell him about! The thought of just jumping straight in for cycle 4 without talking things through horrifies me.....
I hope you get your telephone call and your satisfied with what he has to say.... xxx
Just had an email back from my onco's secretary.... I had chased her up as still no appt through and I thought I would see the doc before moving to T.
I last saw him before chemo started (although he did give me a quick phone call after the first cycle to ask me how it went) - and at that initial consultation he only went through the side effects etc of the FEC bit.
She has emailed back to say he still isn't available for face to face meetings as he still can't drive (broke his wrist playing footie just after I saw him mid Feb).... but she can ask him to give me a phone call if I want one?
Um. Yes please? Don't really want to dive completely blind into the next phase of chemo, thanks very much.
Feel a little abandoned!
Anyway, he is going to call this evening some time apparently... I'd better write down some questions....
Hi Seaside Sa and all you lovely ladies
Well that cake looks good enough to eat 😂.
Lovely to have a day with your daughter just doing the simple things of life.
Just said goodbye to my daughter and family as they are making their way back to Abu Dhabi via Rome ( just to change planes).
Trixielady I am HER 2 Negative, but positive for Oestrogen and Progesterone. So hopefully these Letrozole tablets will keep me healthy.
Going to go out for a walk with my husband and the dog now, it's a lovely day here in sunny Swansea.
Glad to here that everyone seemed to have a good night's sleep.
Implausable the bathroom is coming along well too.
I'm due my 4th and final, for now, chemo session tomorrow. You may have missed my earlier post but the trial I'm on seems to have been successful and Gremlim after the 2nd session had halved in size. I remembered to ask my onc yesterday how much it had shrunk. Onwards now to surgery😭.
I was wondering about Deano too.
Will be back later for a catch up with everyone. Back to Yeovil hospital to see about another wig as I want to be able to try before I buy this time. The wig lady there has been on long term sick, so I bought one online which is fine, but they've got someone else in now so I'll what they've got to offer.
Have a good day xxxxxx
Good morning my beauties,
It was my daughter's 21st birthday yesterday so I spent the day with her. We made a Victoria sponge cake and choc chip cookies. In the evening we made pizzas. We even managed to sit in the garden for a while. It was a lovely day.
Sarah your picture made me smile! I love the different hair colours you keep surprising us with. Happy birthday to your son as well. Hope you're feeling better today.
Trixielady my 4th chemo is due on the 24th April. That will be my first dose of herceptin, followed by my first docetaxel the day after. I had my echocardiogram yesterday and everything is fine for treatment to go ahead. Just hope my neutrophils behave this time!!
Nettie I am so unhappy about the way you were treated. It's not very caring to just pay attention to your neutrophils and ignore how bad you were feeling. Take care and I hope you're feeling bit better today. Wish I could come over and give you a big hug.
MBJ that afternoon tea looked gorgeous. Lovely photos of you all.
Marlyn that eye mask thing sounds scary. I'm glad you told us about it as someone bought one for me recently. I shan't be using it.
Sandra I haven't suffered too much with tingling hands etc, except for my surgery side. I put that down to the lymph node clearance but I will ask the onoclogist next week.
Everyone, I hope the day goes well for you. Take care xxxx