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.
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
I slept like the dead last night, first unbroken sleep I've had in months. Think I really needed it! When my alarm went off at quarter to 7 I was not best pleased, think I could have kept going!
Still feel a little under the weather....aches and pains, bit of a sore throat, mild headache.... but my temp is back to normal so hopefully nothing I need to worry about. Going to take things easy today.
Bathroom is coming along. No sink, loo or shower yet but the underfloor is down, the bath tub is in and he has started tiling. I quite like the little shampoo alcove he has built into the cabinet he has built around all the pipes....
All this talk about the heart.... I haven't been given any heart scans (other than an ECG way back before surgery to check I was fit for the general anaesthetic) or special meds, bit I can definitely tell that the chemo messes with the heart. I wear a Fitbit all the time and my resting heart rate is usually 68 ish. In week one of chemo it goes up into the 80s/90s. And if I do the slighest exercise....just some housework or a gentle walk.... it can hit 120. Which was usually what i would get to if I was really pushing it at the gym.
I'm in week 2 now and it goes the other way....resting heartrate of around 60.
I already suffer from high blood pressure....have been on medication for it for years. I bet it is all over the place at the moment!
Trixielady no I haven't been having nosebleeds. Just a constantly dripping/runny nose which is apparently because chemo makes all your nose hairs fall out.
Can't remember who asked when the green hair photo was taken and guessed 86? Close, it was 1990, going by the approx age of my fat baby
He is now 29 and super skinny!
I'm supposed to be working from home today and it is quarter to 10 and I haven't even logged in. Oops. Better get to it!
Will reply to everyone I've missed later.
Hope all of you are well... Nettie are you still feeling rough?
Yes I’m triple negative. I’m on a couple of Facebook groups for it. I don’t find them that useful to be honest as I just feel I can only go with what I’m told as there are so few options for my treatment. I also feel I’m so early on that there isn’t too much I can really influence or ask about yet. My oncologist is the clinical director so I’m not going to question his expertise!
My heart is fine, I asked if there were any studies I could help with that wouldn’t impact upon my treatment so I was put into the heart study and got randomised in pretty quickly. The pills slow your heart and reduce your bp to protect the heart against chemo side effects. My dad has had high bp for years so I thought it might help. It meant I got an MRI rather than normal heart scan and more detailed care and follow up so it sounded good. Just think I got too high a dose that made me dizzy so hoping the halved dose starting next week will be better 🤞
Edinbird have you joined any other groups?? are you triple negative ??
I've recently joined an HER2 Facebook group for more information as I was due to start herceptin and my echocardiogram couldn't be read so i was also worried about what kinda condition my heart was in? I'm supposed to get it checked every 3 months due to the damage herceptin can do, did i read your on a heart trial ?? Is your heart generally ok ?? Xx
Morning xx the aches aren’t that bad Trixie I was intending to take some paracetamol before bed but I didn’t need any in the end and it’s not so bad this morning so far. Only got two more to go then 11 days off.
Not taking the heart pills really seems to have sorted me out but that means I’m apprehensive of starting them again. But they’re meant to protect my heart and I was reading some scary stuff about if chemo doesn’t work... if your heart is damaged first time you might not be able to get it again so I’d rather try. Was having a look and feel yesterday, sometimes it looks like it’s having a slight effect and other times it doesn’t this time next week I’ll be about to find out 😑
Morning lovely ladies
Sonia28, you haven't actually said how you are? Unless I've missed a post, Your daughters birthday party will put a bit of normality and brightness back xx Yes i start weekly chemo Monday they've changed it to paclitaxel, they've said i can still start herceptin but I'm a bit worried due to echocardiogram not being able to be read
and still waiting for new scan, on the HER2 site they've mentioned a mugga scan so fingers crossed xx
Edinbird, hopefully your back pains have eased ?? Mine got that bad even the oxoycodone didn't help so that's why my chemo has changed xx I got the white bag for the feel good session photos on here somewhere, I'm able to use most of my bag which I'm pleased about as all my makeup was in need of renewing
Ocean21, seeing your garden brightens my spirits its beautiful xx
MBJ, afternoon tea and lovely company is just the job, hope your feeling more settled did i read that you started a move forward clase??? and are your having an issues from the tablets are you HER2 positive? Xx
Implausible your outlook over the years has been fantastic, experiences look fantastic,, How you managing to cope with the workmen?? Marlyn pleased to hear your eyes are better,,Rosina the walk looked nice, I'm struggling to go for walks at the moment i get so breathlessness but not she if its me not pushing myself enough xx
Daisydi hope you sleep well last night is it the steroids ? I only got 2 lots one on the day of chemo and 1 the day after but my face still seems to go a deep redish brown xx
Seaside sar is it your 4th chemo soon? Xx
Sandraindurham pleased they're doing something about Veronica's chemo hopefully with the correct dosage she'll start to feel much better xx hopefully this will be the start on things improving for you both xx
Deano where are you? Has the last chemo knocked you down hun?? Xx
SusieB, how you doing hunny its been a difficult time, whereabouts are you with your treatment?? Xx
Nettienoo, sorry about the way you felt at the hospital but don't let their attitude put you off going back its so important to be treated quickly as you are well aware of, hopefully your change in chemo will work better i had my 3rd on changed by 20 % from100 hold on in there, big hugs xx
Hi Ocean that does look like a hoopoe but the one I saw had a red head. Not sure whch is male/female. They are on the move at the moment so it probably is x
I think we’ve had a hoopoe in our garden today !
Tim thought it was a woodpecker but I remembered the photo Rosina posted. I was trying to creep up a bit closer , but wasn’t to be. Hopefully, he/ she will be back tomorrow
I love sunshine and blue skies but so many things coming out ahead of time, not such a fan. Don’t know how anyone can say climate change is nonsense. Something is changing, nature is showing us it is.
Im always layered up clotheswise because I’m ‘proper nesh’ as they say South Yorkshire way. If I take any of my layers off you know it’s hot That said since starting chemo my temp has a mind of its own. Lots of you seem to have the sweats at night, mine happen in the morning and then any random time.Tim brought me in a cuppa this evening and I had 2 biscuits, I got so hot after that that I had to take off one of my layers ,unzip my other tops and lift the hat that’s usually resolutely clamped down on my head!
Marlyn, hope you’re eyes have recovered. Must have been really frightening. I’m chronically short sighted so an experience like that would have completely freaked me out as my vision is so bad to begin with.
MBJ , your afternoon tea looks delicious.Hope that a wonderful time was had by all.
Big hug and love to everyone .
MJB, your afternoon tea looks lovely.
Marilyn, that must have been scary for you, glad your eye site is back to normal, I can no longer use the eye cream from body shop that I have used for years, as my eyes have gone extra senstive.
Edinbird, it must be so frustrating with HR, braford score never shows true sickness in my eyes, but glad youve worked in out.
Nettinoo, It was discusting how they treated you in A+E, we have a ward that we need to go to if we have any concerns, so we bypass A+E.
Ocean21, France looks lovely, im very jealous of your garden.
Sandraindurham, im sorry Veronica is having such a tough time.
Daisydi, glad to hear your feeling slightly better.
Implausible, I love the picture with green hair, you havent aged at all. I wish I was the same.
Trixielady, i hope you are okay, is it this week you change to weekly chemo session?
Susie B, Hope you have had a good day too.
We so far half term has consisted of me taxiing my children around, but them being too busy to spend time with me. The joys of them gettiong older. Presently I have 6, almost 17 year old girls eating pizza and drinking wine in my kitchen as a pre birthday night for my daughter ( leah will be 17 Good friday 2 days after chemo). Lots of giggles and laughter coming from the room, just as it should be, oh to be young and care free again.
Oh took Danny to GP today, they throughly examined him, they cant find anything wrong, another blood test Friday, and if his levels are stiull the same they will refer ro peadatrics, but at least they examined him this time.
Evening all. Just a quick check in as I'm feeling a little bit rough so I've taken myself off to bed. Temp is a little higher than usual but not over the limit. To be honest I think i've just overdone things today a bit and the enforced early starts and endless builder noise and disruption have caught up with me.
That eye mask thing sounds scary!
Catch up with you all properly tomorrow x
MJB, your afternoon tea looks fab. I feel hungry now just seeing it. You all look as though you had a wonderful time. xx
Ocean21, it was me who asked where abouts you were in France. I've just been on Google maps and can see now how your plants are so far ahead compared to here🌹🥀🌷🌲🌳🌞.
Edinbird, all that hassle with HR (jobsworth), but good for you and taking what you're entitled to, plus a bit extra. When you get treated like that it makes you think, why bother?
Third time lucky I hope, this site is solo sensitive. Afternoon tea with my daughter, granddaughter and daughters 's muin law our treat for Mothering Sunday. It was lovely.
Oh this seems a bit harsh to me, it's like they only looked at one aspect namely your Neutrophils. Even though they are ok you don't have the same reserves as you did before bloody BC and chemo attached you. Please don't worry about going back again if you feel you need to, after all that's why they are there.
I am having crap from the Health Board about my complaint. The letter even suggests that I was put in the resuscitation room for my own benefit after my collapse can you believe it.
Well I am having none of it they even tried o palm me off with a second meeting with the Modern Matron, and they did not even get his name right!
I hope you are feeling better and I know a delay is upsetting but next week you will be even stronger.