@Hawketower, Last chemo finally done! Well done, I hope it treats you kindly and I hope your MRI went well today. X
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@emsj, that all sounds very confusing, you are so right, nothing seems to be black and white, just when you get your head around one thing, something changes. Wishing you luck with the radiotherapy. X
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I hope everyone is doing okay.
I saw the oncologist for my post chemo appointment a week after my last chemo, he was very concerned as my heart rate was 130 and the walk from the waiting room left me out of breath. It turns out I had a bit of a urine infection, I had no idea that could leave me feeling so weak. That has all cleared up now but two weeks after the last round and I still feel sick when I eat and my stomach is still very unsettled.
The oncologist advised a double mastectomy due to genetic results so I am seeing the breast surgeon tomorrow. Now I have decided to go ahead with it, Iām just hoping I donāt have to wait too long. X
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Hi!
Sorry I havenāt replied before, Iāve been a bit hectic and unorganisedā¦
@Hawketower , so good that youāve got the last chemo done! Long day in hospital but itās behind you now. Hope you are feeling ok and I hope the mri went ok.
@NikiR, Iām 4 weeks post last chemo, I donāt have the same kind of nausea but I do still keep feeling a little bit sick at random times. I hope your nausea has settled down now. Have you got a date for surgery?
Iām still waiting for my radiotherapy appointment, Iāve been told it will be before Christmas, they are very slow about sending appointments out though, makes it hard to organise anything in advance.
I went to see onco yesterday for the post chemo appointment, he was asking me usual questions about neuropathy and balance, then asked about headaches (Iāve never mentioned headaches to anyone, havenāt really had many) and whether I saw flashing lights, then said, you donāt need an mri thenā¦. I was like what?!! Why were you thinking I needed an mri?!! I donāt know what I had said to the nurse with the pre chemo list of questions that had him asking these questions! Anyway, I am actually doing ok.
He has prescribe me a 6 week trial for letrozole as I asked again why I had originally been told I would be taking it, then told I wouldnāt. He says itās of little benefit but itās my choice. Iām happy not to take it if I donāt need it, I wanted to know why I was told two different things. There is no solid answer to this as drs donāt always agree.
I have said yes to the zometa (zoledronic acid), but I wonāt be having the first infusion until January so I have time to think about it more. It is supposed to give a small benefit to post menopausal women to prevent bone mets, there is a very small chance of it causing jaw necrosis. My dentist says my dental health is good, I need to get a night time mouth guard sorted out to stop me grinding my teeth though, as I had to have an extraction a few years ago after grinding my teeth killed an otherwise healthy back toothā¦
Iāve booked a holiday for next August, Iām hoping it brings a sense of normality back. Planning for the future.
I hope everyone is doing ok
X
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Hi all
Post-chemo appointment on Tuesday summary - the chemo hasnāt shrunk āItā enough so I still have to have a left mastectomy and DIEP flap, and axillary removal or whatever. News casually delivered, so I hid my gutted reaction. She thought theyād agreed the 12th December for surgery but Iād need to contact the clinical specialist nurse team for confirmation. So I rang them and they said why are you asking us (which tbh has been pretty much their response to bloody nearly everything), you need to ring the breast surgeonās secretary. So I did. Why are you ringing me? you need the plastic surgeonās secretary. So I finally just spoke to her and yes the operation is the 12th, with various pre-op etc appointments beforehand too. Iām so over all this shuffling and shunting between teams and departments and having to chase for every last bit of information. Even getting my bloody NHS wig prescription voucher thing was a mission. I got a lovely wig btw, but havenāt really been out of the house that much to need to wear it. Iām still sleeping badly and my guts are in turmoil, I guess you can detect Iām not in the best of moods 
@emsj cripes youāve got a lot going on. Do you feel like you have somewhere to go to find answers? Glad to hear about the holiday, something to look forward to instead of this crazy day to day hamster wheel!
Howās everyone doing? x
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This is exactly the same regime Iāve been on. Started July. Fourth & final docetaxel last Friday. It definitely gets cumulatively harder. Part of me thinks wow that was my last dose, but my body is saying this is week one of a cycle, here are the same old symptoms again. Weāre not done yet.
Surgery is booked for 15th Dec. Itās been good having 2 x MRIs aling the way to confirm how the chemo has worked and shrunk my tumour and what was in my lymph nodes. Theyāve still all got to come out though 
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@suedot , itās great when you get to the point you are starting to feel better and know there is no more chemo! Iāve had one phesgo by itself, thatās was ok, didnāt notice much in the way of side effects.
@Hawketower , I feel let down with the communication, itās not what it should be. And it seems you are having your own communication problems with the hospital too. You just donāt need it when you are already stressedā¦.
Hope everyone is having a good Sunday!
X
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Thank you. So good to hear from you @emsj
You are so right about communication.
It is indeed a happy Sunday 
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Hi all, It sounds like we are all having similar experiences with communication and the back and forth between departments, I feel a bit like I did at the beginning, waiting.
@emsj I hope you get your radiotherapy appointment through soon, it would be get if you can get that all done before Christmas. Itās looking like I will have to wait until the new year for my surgery, currently waiting for a CT scan and appointment with the plastic surgeon who will decide the date for surgery, breast surgery estimates January so I have my fingers crossed for that.
@Hawketower I completely get you not being in the best mood, itās hard enough taking in some of the things we have, without the people sharing the news forgetting they are talking to an actual person! Really pleased you got your date for surgery confirmed, you can now plan for your next step. I also wanted to thank you for sharing that you were getting a wig, I was inspired by you and got myself one too, Iād been getting really upset with my hair being so patchy and fed up walking around in a hat.
@suedot youāre almost there, the last dose is done and the symptoms will pass for the last time, itās a lovely feeling getting to what would be chemo day knowing that you donāt have to go through it again. And you have your surgery date so you can focus on your next step without any waiting around for dates. Wishing your symptoms pass quickly and you can do something nice to give yourself a boost before your surgery.
Iām taking inspiration from @emsj and have booked a holiday for this time next year, to celebrate my 50th birthday, now just got to find travel insurance!
Thank you all you sharing your journey, it really helps me not feel so alone on my journey. Best wishes to you all xx
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Thatās exactly it! With the best will in the world anyone whoās not going through this canāt really understand, whereas you guys do XX
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Feeling ready to cry 
I have just been chasing appointments with the hospital, I was told there is a 7 week wait for urgent CT scans and they canāt fit me in for my first appointment with the plastic surgeon until the end of February. I was told my mastectomy would be in January.
I feel like I have just about been holding it together and this has just pushed me over the edge. Having cancer is hard enough without all the waiting
Sorry, rant over, I just really needed to vent.
I hope everyone is doing well and your week is going better than mine xx
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NikiR, sending big hugs, itās frustrating when your focused and got dates in mind, we hear you and plenty can sympathise so if you want to cry, rant, scream or just share do so plenty of ears here for you 
Shi xx
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Oh @NikiR thatās proper shit, I am sorry 
I came on to say that I went on the My Pathway app earlier to check something, only to see that my surgery has been moved back to 19 December. Not that Iāve gotten anything whatsoever in writing yet, even about the original date of the 12th! Then the breast nurse rang to book me in to see the breast surgeon at the EXACT SAME TIME AND DATE as when Iām already booked to see the plastic guy. Iāve had tears and a massive rant, and Iām sending you ALL the hugs NikiR cos this is all proper shit and we are the last people who should be having to deal with all this crap xxx
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@Hawketower you are right, it is shit and we could do without dealing with this kind of thing on top of everything else. So sorry that youāre having a similar experience 
Hope you got your appointment sorted. Sending you hugs too xx
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Hawketower sorry your dates have changed too, itās so frustrating when your focused on dates and wanting to get on with it, it can feel like being on quicksand sometimes but your 
and kicking itās butt 
Shi xx
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@NikiR and @Hawketower , Iām so sorry you are having to deal with this, while we all understand the nhs is under pressure, we are dealing with cancer, itās scary and overwhelming as it is, you just donāt need delays or changes to appointment and you shouldnāt have to chase things up with the hospital. Itās so shit. Have you got a nurse you can speak to @NikiR? End of Feb seems like a very long wait.
I got my radiotherapy appointments, starts on the 19th, tues to Friday, then last one will be the day after Boxing Day. Itās at a different hospital, 45min drive, then about an hour looking for parkingš¤¦š»āāļø.
I started taking letrozole on Monday, so far havenāt noticed any side effects, although I already managed to forget to take it today. I donāt know how long it takes for side effects to start.
I also got a wig, I havenāt worn it outside the house though 
. It looks too neat and tidy, my own hair was straggly and messy, also with a lot of grey but not all grey, so a tidy wig which doesnāt have grey in it just looks weird. It also itches like crazy, and my son, bless his heart, was looking at it with glee right before he went to pull it offā:roll_eyes:
I really hope you get your appointments sorted out @NikiR @Hawketower 
, and I hope everyone is doing OK
X
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I didnāt think to speak to the nurse, I might give her a ring in Monday.
Good news on your radiotherapy appointments, not so great that the hospital is so far away, especially when you have to go everyday. I hope the Letrozole continues without side effects, how long have they suggested you take it for?
I completely agree about the wig being too neat, I said it looks like Iāve just come out of the hairdressers, mine is never so neat. I have found it settles down once youāve washed it. I have worn mine out a few times but take it off as soon as I get home. Iāve now had what was left of my own hair cut off, the cold cap left it very patchy with lots of bald patches but 4 weeks after my last chemo and the bald patches are all now covered.
Have a good weekend x
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Hi everyone,
Although I, and I guess a few others of us here maybe coming to the end of treatment (I am 2 weeks post my 4th dose of docetaxel with Phesgo), the taste changes Iāve had while on docetaxel are still really severe. At times thereās hardly anything including water that I can put in my mouth that doesnāt taste awful. As cycles have gone on, things had been marginally better in week 3, but the last 2 thereās been no real let-up at all and Iāve not been able to eat anything but soup and natural yoghurt for what feels like months. Has anyone else had this issue? Itās not sickness or nausea. I get really hungry at times. Has this happened to anyone else and if so, how long after finishing docetaxel did things return to anything like normal?
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Suedot, itās like slime mouth isnāt it, a stuffed crust mighty meaty from dominos worked for me, think others found ginger biscuits worked for them hope that helps Shi xx
Hi @suedot, I had the same thing but found different things worked each cycle. Mine eased up during week 3 of my final cycle, fingers crossed yours does the same. xx
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