Sorry to hear you have had issues with your team too. Really not what we need on top of the rest. I hope the new one will provide better care and make you feel more confident with your treatment.
I am meeting my new oncologist tomorrow and already feeling better. The one I have had was so awful, no empathy, messy, always late or not turning up. I lost faith and went for a second opinion from a different hospital as I was worried getting one from the same hospital would just back her up.
Things are moving slowly though, which ahs been the case from the start although I went private.
I wish you a smooth recovery break before surgery.
@marionse25 Iām so glad you are switching oncologists. I have the lovely Dr Ring at RM Sutton. He is really slick and professional. Iām there tomorrow. Fancy a cup of tea at Maggieās if our times coincide? Iāll DM you.
As we donāt ring the bell at Marsden I slapped a bench instead, shared it on Facebook and invited friends to bench slap too. Many of them did. It entertained me greatly yesterday. I think bench slapping should become the alternative for hospitals that donāt have a bell.
Well done! I really thought about you yesterday hoping that wverything was going well.
Very happy with Dr Ring, so clear and structured, I know when I next see him etc so refreshing compared to the onco I donāt even want to talk about!
I will be in Sutton again on Thursday morning to see Dr Power. Things are moving a bit now. I wish I had met surgeons earlier as I donāt have much time to make a decision.
I trust you will celebrate all weekend such an important milestone!
3 more chemos for me. Dr Ring confirmed my picc line would go at my last session I canāt wait!
Have a lovely weekend and a great start to a well deaerved break before surgery
CONGRATULATIONS to those whoāve since finished chemo!!
You made it
Hopefully not too long now for everyone else - hang in there.
Not sure whether to be reassured or disappointed that a few of us have not been happy with our oncos and are having to switch. Itās not even as if weāre asking for the earth.
I was reading some patient reviews of others I shortlisted and they were being described as ākind, compassionate, patient, never made me feel rushed, very thorough explanations, answered all my āsillyā questions.ā Basically words I could never associate with my current onco.
So ladies, Iāve been abroad twice since chemo ended. All planned before my diagnosis. Just back from a week in Portugal without the teens!! but with a really good friend instead.
I donāt wear a prosthesis or softie but instead wear my unobra and one shoulder tops/dresses - fully embraced the look and itās all the rage at the moment.
On my last day a lady came up to me after I boarded the ferry back from a nearby island and asked in Spanish if I speak Spanish (I do but was surprised as we were in Portugal).
Sheād spotted me earlier in my very bright dress by the restaurants then when she saw we were on the same ferry back she had to come say hi.
She had the exact same chemo as me but before surgery and has started the same hormonal therapy Iāll be on. She was 2 months post mastectomy.
I had no idea I could chat about all the treatment, coldcapping, side-effects, nails falling off etc in Spanish ha
Her husband had said not to come speak to me but she knew better and I thanked her for it.
A lot of people have reconstruction or wear softies etc so people donāt realise quite how common bc is and it was lovely to have someone identify a fellow pink sister and come say hi. I certainly appreciated it and it was a wonderful way to end my holiday. It was also her last day on her end of active treatment holiday!
I hope those who can and want to travel are inspired x
So lovely to read this that you have started traveling.
I am still quite anxious if I should book one before the year ends. Did you get a travel insurance? Any recommendations?
Take care. x
@marionse25 Sorry! I have just seen your post from a week ago! Iām so glad you liked Dr Ring. Isnāt he great? I was in Marsden yesterday for Phesgo and Zometa (Not feeling great today so I wondered if anyone else felt rough after that combo?) We could have had our cup of tea! Keep me posted. Perhaps next time will coincide.
@healing24 Iām so pleased to hear you have had a great time in Portugal and met a pink sister. Plus which, youāve found a way to make the unobra and one shoulder tops work for you. Great attitude. I too am concerned about travel insurance @starapple Iām so desperate for a sunshine holiday.
I hope you are progressively recovering from your last chemo and will get your tastebuds back soon. Sorry youāre not feeling great with the combo. I have shooting pains a few days after each phesgo but I havenāt finished chemo so not sure how it will feel on its own.
No worries about yesterday, I took the time to pop into Maggies which is so amazing. It feels like Grand Designs! The staff was very caring and the palxe is so peaceful I love it.
My appointment with Dr Power went ok although I now know I canāt have an implant whether an expander or not. I am now left with the option of going flat or DIEP flap which scares me. I really donāt want a major surgery and long recovery. I really donāt know what to do. I had a big cry I must say.
I wonāt be in Sutton until the 8th August to see Dr Power again. The date mis likely to change I will let you know in case youāre around! I am having a CT scan on Monday to check my blood vessels. It may be that my belly cannot be used as I have a massive scar and probably some damage. He could use my inner thighs but that would mean an even longer recovery. I canāt even think about the leg pain!
Now focusing on my last 2 chemos, 11th paclitaxel on Monday and final one the following week if no delay. They will also remove my picc line phewwww!
Almost the weekend. I have had a challenging week at work and canāt wait to relax a bit. Fatigue has finally hit me but work may have played a lot s I have been working on nasty stuffā¦ anyway I canāt believe I have almost completed my 5 months of chemo.
Maggieās is lovely over at RM Sutton. I used to sit upstairs on a Thursday and work on my laptop at the desk up there in between Onco and chemo.
Iām so sorry you canāt have an implant. I also really donāt want the major surgery of a DIEP Flap or the tummy scar and recovery time. Iām not surprised you were upset. That must be so disappointing.
Unfortunately 8th August is the day after my mastectomy so Iām 100% sure I will be in bed that day, hopefully at home.
Keep going through those last couple of chemos. I was elated when I finished those. I have started to taste savoury again but weirdly I couldnāt taste the sweetness of my fruit this morning and I have been able to taste sweet all the way through. Obviously some changes taking place.
I went to the village pub to watch the football last night and it was lovely to be out and enjoy a Prosecco again, even if we didnāt win.
Waouh the 7th is pretty soon! I bet you must be thrilled and scared in the same time! I am planning to go to the monthly networking meeting at Maggies that day, in the afternoon I think. i will will definitely be thinking of you and sending positive vibes.
It is great to know your taste is coming back. I am sure the prosecco was bliss. I really canāt wait to be able to taste food. Right now everything tastes like moldy cardboard. I canāt taste sugar either. The only thing I can taste is sharp lemon.
I had my 11th paclitaxel yesterday, I slept the whole way until my husband came to pick me up. The antihistamine combo really knocks me down. It was a long day as I came for a CT scan of my belly first, to check my blood vessels for a possible DIEP surgery. I still canāt bear the though of going through that, but at least I will know soon if that is an option. If I am told they have to use my inner thighs then it will be a definitive no for me!
@marionse25 I had no idea they could take from the inner thighs, that sounds horrificā¦ Iām pretty set on doing a DIEP flap because I donāt want an implant, but Iāve only heard back or belly mentioned as far as sources. I donāt think I would want to do it if that was my only optionā¦
Iāve got some time to think about reconstruction though as they canāt do it all in one go regardless of the option I choose since Iāve still got radiotherapy to go post surgery. My surgery is in 2 weeks so Iām still trying to get the last bits and pieces in place and simultaneously not wanting to do it and wishing it were already done.
It sounds horrific indeed I will go flat if that is the only reconstruction option.
I will also have radiotherapy but If I decide for the DIEP I will have immediate reconstruction. I queried about radiotherapy and my surgeon said it would be better and a nicer result to have immediate reconstructionā¦ so much to think about. I have not been given a date yet in any case but I expect it to be about 4 weeks after my last chemo, which is on Monday so not long to go. I am having sleepless nights about what to do.
I hope you are feeling better and that you can taste food again. Try to make the most of the break!
Sounds like surgery and sll iys decisions are coming up fast now. Iāve got two more paclitaxel to go. Csnt wait til the end of that. They reduced the dose again because of my myriad pf side effects - diarrhoea, a rash on my hands ive had for weeks and is now creeping up my arms and the tingling and altered sensation in my fingers, it was the perphersl neuropathy i was most worried about, i would rather it not get any worse and be left with it after trrat!ent ends. Looking forward to be sble to eat nice food the most tho. I had some halloumi with my eggs this morning but after the initial bite it tasted so salty and bitter .
Ive got my appointment with my breast surgeon on Friday so ill have some idea of my options then and get the results of recent MRI! A bit worried about that.
Good luck everyone.
Penny
@marionse25 I think it depends on how much fat you have for the surgeon to take from because radiotherapy can shrink the reconstructed boob if you have it done pre-radiotherapy. Iāve got only ājust enoughā according to my surgeon so I would potentially look lopsided. Iām seeing him later today and Iāve gained a little weight since I last saw him so weāll see what he says nowā¦
@pennyp have you looked in to acupuncture at all? Thereās a charity near me that offers oncology acupuncture and the woman doing it said that there is some research that shows that acupuncture can help some with peripheral neuropathy. I have a tiny bit in my hand, so sheās started helping me with that and weāll see how it goes.
Hi @kartoffel
Thankyou, yes i have beem having acupincture support sll the way through. Recemtly the therapost jas beem targetting my fingers and feet and it has helped a lot, i csn definitely feel the difference snd hopefully it will stop any progression, definitely recommend it. I do pay to go locally, although i could get it free if i travelled s bit, but its quite a long way.
@marionse25 I just want to get the next stage ticked off. I will ask for the window to be open on 7th August so that your positive vibes will come flying through!
Itās interesting you say that everything tastes of mouldy cardboard, I described my dinner as mould and metal on Monday so there must be something in that.
Glad you slept all the way through your 11th Paclitaxel. That combo used to knock me right out too.
Let us know what they say to you re your surgery options. I was hoping to get a break before mine but then a load of appointments came in for the week I had earmarked. Cāest la vie. Iāll hopefully be able to save up for a really good holiday after all this is over.
@kartoffel I wonāt be having any fat taken from my thighs either, thanks very much. I have not only spoken to someone who has had it done but Iāve seen the images of the scarring and itās not for me. Good luck to anyone who does go with that option. Each to their own but I still favour an implant and am using it as an incentive to lay off the cakes!
Hi @pennyp Iām so glad you are almost at the end of Paclitaxel too. Hang in there!! And make sure you slap a bench if you donāt have a bell to ring. I hope the peripheral neuropathy subsides soon and let us know what your surgeon says after your Friday appointment.
Moldy cardboard with vinegar it is actually. I have just attempted to eat a lemon madeleine how disgusting. It stings like vinegar no lemon at all. I wonder why I donāt lose any weight tbh!
On a positive side I managed to do a pilates class last night. I was impressed with myself but I can tell you my abs are no more!!! I am usually so active so itās been upsetting to slow down and also be restrained by my picc line. I wonāt thank the nurse who told me I would be absolutely fine with it to do yoga.
@kartoffel not sure why surgeons have different opinions on immediate or not. Apparently I would have just enough fat on my belly for one boob, provided my blood vessels are ok. I hope I will know before the 8th Aug when I see my plastic surgeon again. I am meeting my breast surgeon on the 30th July. Doctors at Royal Marsden in London are not very coordinatedā¦
Re neuropathy I wish I could have acupuncture but I have a terrible needle phobia. I have had bad shooting pains and cramps in my legs and feet with Paclitaxel, and also numb fingers. The only advice was hot water bottles and tiger balm which have not done much. As I am allergic to most pain killers my options are limited :-(.
Hi @pennyp
Almost there well done! I have one more paclitaxel to do I will think about you. I am sorry you have suffered from PN too and I hope that both of us will see massive improvement once chemo is over
Keep us posted on your surgery appointment. I have a MRI and a 3D mammogram on the 25th July I am crossing fingers for you and I to have good results.
@marionse25 the not being able to be as active as you want whilst chemo is ongoing is no fun. I was in the best shape of my life before this whole diagnosis came & I definitely feel like Iāve lost some muscle even though I tried to keep active. In between my last chemo and my standalone Phesgo, I managed to put on 3 kg which I am not happy about. Well done for getting the pilates session in.
Regarding the acupuncture, Iāve not got a needle phobia myself, but those that I know with phobias have had luck with putting a mask on before the treatment because it helped them to not be able to see what the therapist was doing. Not sure how severe your phobia is or if that would be an option. Alternatively, you could try acupressure instead because it would have a similar effect applying firm pressure to the particular spots instead of needles. Iāve had luck getting rid of cramps and headaches with acupressure.
Trust your gut and Iām sure youāll make the right decision for you.
My decision to stay flat on one side was because I didnāt want more surgery when Iām otherwise healthy, it wasnāt even so much the scarring as the weakness in the area where Iād be getting tissue from. E.g. I play tennis and need my core (abs and back/shoulder) working.
I also didnāt want silicone in my body after the toxicity of chemo and cancer and I donāt want to go through having to replace the implants in another surgery in 10-15 years.
So many individual and personal choices in a situation we never chose.
Do start doing your exercises soon after your surgery. Thereās a gradual progression.
If youāre having lymph nodes removed then these 2 videos may be useful to get you doing the self massage and drainage. Iāve paid a small fortune getting a specialist. But raising my arm in the air also helps to drain.
Those with peripheral neuropathy I found massaging/rubbing my hands and feet with a good natural balm really helped along with wearing compression gloves and socks during infusions as well as in general.
My dose was reduced as soon as I had signs, I was given a B6 vitamin prescription and I started wearing the iced gloves and socks during infusions as well as the compression gear and I never got it again.
But I was also special and got the neuropathy on 2nd round of EC -my team had never heard of that happening.
I made sure my compression socks were fun
And my natural balms were also amazing for keeping my skin moisturised and healing the peeling the chemo started. https://www.ohemaasbb.co.uk/
6 weeks after I finished chemo my right index finger nail finally fell off but I hung onto it for as long as possible that 1/3 had already started growing through.
I hope your tastebuds start coming back online soon. Youāve done so well to keep eating with limited taste. Mine werenāt too affected so Iām very impressed by you all.
I had my 6 month surgeon appt physical check up and all good. Annual mammogram and mri for mastectomy side will be in november.
Iāve started seeing a physio to help with my scar. Overtime it became very tight and stuck to the chest wall and I could feel fibrous tissue. My physio is amazing with scar tissue and explained that it should actually be soft and moveable and taught me how to show my scar love and massage it. She has these baby accupuncture plasters she puts along it which have released and softened it.
2nd zoledronic acid infusion was on Wednesday and other than a little stiffness on Friday I was fine. I did do a climbing lesson straight after the infusion then yoga and played tennis the next day so my body didnāt have too much time to cease up.
Enjoy the sunny weather while we have it, ladies and good luck with the next stages and prep.
I think bench slapping should become the alternative for hospitals that donāt have a bell.
whether an expander or not. I am now left with the option of going flat or DIEP flap which scares me. I really donāt want a major surgery and long recovery. I really donāt know what to do. I had a big cry I must say.
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