Still in hospital Had MRI and CT yesterday. The doctor very helpfully said in front of my mother that there was no sign of metastases. She hadnāt been thinking about that possibility at all, so we then had a row about me holding info back
Itās not diverticulitis, and stool sample (7āfrom the chart ) so I think basically the answer is my bowels hate chemo and thereās nothing I can do to stop all this temperature spiking and needing antibiotics again. Waiting for doctors round and praying heāll release me today, Iām now going stir crazy in a ward of ladies who are all currently sleeping (11.25am) I look like such a fraud in comparison!
@emsj Iāve been thinking about exercise and bone strength too. Was considering taking up weightlifting when this is all over - donāt fancy the bulk but do want to be strong! Have also seen an aerial silks class locally which looks like fun. Currently only managing walks and gentle yoga - boring but totally my current limit!
Youngest child has just been sent home from school with her cold - sending her to do another Covid test shortly!
Happy āover halfā way mark to everyone who has hit this important milestone, itās great to be over the summit of this particular mountain! Iām now 5 down, 2 to go and in six weeks I can use the magical three letters - PFC!
Freedom pass approved a couple of hours ago, just waiting for cannula removal and drugs to take home. My oncologist said sheāll discuss with me in clinic on Tuesday how weāre going to deal with the constant bowel issues. Maybe a dosage reduction.
Anyhoo, I canāt wait to get home to my own bed and bathroom, hope everyone has a good weekend x
@Hawketower , so happy for you that you are going home!! Freedom!! I hope you sorted things out with your mum, the drs are so blunt and just come out with stuff that it can take you by surprise to say the least. Hopefully they will have a good plan to stop the issues happening againā:crossed_fingers: Hope you have a good weekend x
@Vanelliope , I was thinking weight training too, right now I can do very short walks, dance around the house a bit, and a bit of stretchingā¦. I feel like my posture now is basically being curled up in a ballš. As time goes on Iād love to hear how you do with the exercise. Iāll be on letrozole so bye bye oestrogen, I also got a call from BC nurse who mentioned zolendronic acid infusions to help prevent bone mets (back to drs and nurses being blunt, I wasnāt expecting that and was a bit shocked), so, yep, I really need to try and get in to a habit of exercise after this chemo. One step at a time though.
@Hawketower so pleased you have finally been allowed home. It sounds like youāve had a really tough time. Fingers crossed they do something to make it easier on you next round.
@Vanelliope, I hope you managed to stay Covid free and are able to plan a belated birthday celebration for your husband.
@emsj thank you for your words of encouragement, counting down to the end of chemo is the only thing keeping me going at the moment.
Iāve had a rough few weeks but Iām having my dose slightly reduced for the next round so hopefully it will be a bit easier. Next round is on Tuesday and only just feeling okay.
This journey is an emotional rollercoaster and this last few weeks I have cried more than I have since the early days after diagnosis, I found it much harder to stay positive when I have been feeling so ill. I like the idea of speaking to someone, my doctors surgery did do a referral weeks ago but I havenāt heard anything, I will look into McMillan.
@NikiR, I hope tomorrows chemo goes ok and with less side effects. Itās really hard/impossible to keep positive when you feel really ill, your basically just hoping to get through the next few hoursā¦
lowering my chemo made a massive difference to me, Iād been questioning why I was struggling so much, turns out it wasnāt for lack of trying, or having a positive outlook, or just āgetting on with itā or whatever, I just had a bad reaction to the chemo.
Definitely give macmillan a ring, or maybe they have someone in your hospital?? As Iām in Wales, it was macmillan who arranged the counselling but itās provided by Tenovus, I think it can also be Bupa counsellors. If youāre in Wales you can call Tenovus directly. I had no idea what to expect from counselling but Iāve found it very helpful. My gp has also given me diazepam for when I need it as I had some panic attacks. Whatever gets me through it.
Hope everyone is doing ok, be kind to yourselves
X
Thank you. You definitely need a few days off to recover, I donāt know how you are managing to work, I work in a primary school so have been signed off due to risk of infection, I feel so shattered most of the time, I donāt know how I would last the day. Take care x
Thank you. It so good to hear that reducing the dose made a difference, I been feeling like Iām failing in some way because I need it reduced, like you said, whatever gets us through.
@NikiR@emsj so glad to read you were feeling the same way about it i.e. feeling like you were failing in some way by not getting through chemo without loads of issues (not that I wish anyone to feel bad about chemo that is). Saw the oncologist today, I will Definitely not be having a 7th cycle, thank God, and they might not even do the 6th as Iāve been so poorly along the way. I asked what Iād done wrong, or what I could change, seeing as I was admitted last week, and she said nothing nothing at all I couldāve done, itās just affecting me badly and thatās down to what the doctors are putting into me. Why do we blame ourselves for stuff? Especially stuff like this??!! I donāt think a bunch of blokes would be doing that. She wanted to delay my 5th cycle by a week or so to give me more time to recover, but I said nah letās get it over with. Itād be too much hassle to rearrange around work, as well as not being very restful if I had to work next week instead of have chemo, plus my sister has bought her air ticket and arrives Sunday. Iāve decided Iām going to take 2 co-codamol Monday morning and hope the cooling cap isnāt as much of a mare as it has been. Does anyone else feel really sick from the steroids? Taking them twice the day before, and on the morning of chemo, really sucks. Dexamethasone I think they are. The doctor said today theyāll double the dose of filigrastim, and start it earlier, so probably from day two Iāll be injecting myself for ten days in a bid to keep my bloods up and avoid admitting to the ward again. Oh and sheās going to reduce the dosage of chemo for cycle 5.
Ramble over, itās been one of those days sorry. How is everyone else feeling? x
@Hawketower@emsj it really is good to hear that you are not the only one feeling the way you are but no, we should not be blaming ourselves.
I have been feeling a bit sick today, I didnāt think about the steroids but do think it was them that kept me awake all night. Iām also on the Dexamethasone.
Cold cap wasnāt too bad today, struggled at first but quickly got use to it.
I had my dose reduced by 10%, it really seemed to make the treatment much quicker. Iāve also had extra anti-sickness so hopefully that will make a difference. @Hawketower, best of luck with your next treatment, I really hope the adjustment make it easier for you.
Take care all xx
Hi, Iām not feeling too bad today, Iām at day 10 so out of the worst days thank goodness.
I really donāt know why we are so hard on ourselves, I also thought I was failing by having the dose reduced, but I would never think that about someone else in the same situation!!
I have 3 days of steroids twice a day, so far I havenāt had problems with it, I donāt even have trouble falling asleep!!! I do keep waking up though, but that is more from the neuropathy in my hands and feet which has gotten a bit worse. Every day I need to nap by the afternoonā¦.
Hope you are all well
Xxx
How are we all doing today lovelies? I think everyone needs to give themselves a big hug - we are all bloody awesome to be getting through this, in whatever way we can. You are ALL smashing itā¦
Latest here is an email from the teenās school telling me they are doing a PSHE lesson on breast cancer. Really good they are doing it but feel for my girl as I think this will be hard for her. Iāve offered to support in whatever way I can as I do think itās something all schools should offer.
In other news, Iām now on day 8 after my second doc/phesgo and hoping thereās light at the end of the tunnel. Really tired and not sleeping well, everything tastes like crap and my insides are not happy. Otherwise pushing on through, only two more chemos to go, wooā¦
@Vanelliope pleased to hear you are getting though, it is a good feeling when you have more sessions behind than ahead.
Iām on day 3 of my second doc/carb, the lower dose and extra meds seem to be helping. My main issue at the moment is the taste, really struggling to find things to drink that taste okay.
Hope everyone else is doing okay.
Take care all.
Howās everyone doing? Iāve just taken my first dose of Dexamethasone before chemo tomorrow. Round 5, and I shouldnāt but Iām hoping itās the last. Theyāre now saying maybe itās shrunk enough to not need a full mastectomy. But what about the satellite lesions I asked. Well we wonāt know till we do another MRI. Hmm, maybe donāt give me that potentially false hope then? I dunno, Iām just tired and over all of this now. Hope youāre all ok xx
Hawketower thatās another one ticked off tomorrow, keep focused Google the Malcolm McLaren double Dutch video, this about sums up how chemo 5 & 6 feel you just keep skipping Shi xx
@Hawketower I hope your chemo went well today and you are feeling okay. It sounds like you are getting lots of confusing information, I hope you get some clear answers soon.
I feel like Iāve just been left to get on with it, I havenāt seen or heard from my oncologist since before chemo started. I think I get to see him again after my last chemo to find out next steps.
I am now day 7 after number 5, the lower dose definitely made this round easier but I am still finding that the least little thing tires me out, I spent most of the weekend in bed and I needed a nap after having a bath today.
Itās been a long journey but the end of chemo is in sight, hang in there everyone.
Thanks @NikiR They reduced the dose by 15%, I managed to walk a mile home from the hospital after chemo, had a lovely walk in the countryside yesterday and had a decent sleep last night even with the steroids
Sorry to hear youāre feeling a bit adrift oncologist-wise, I know what you mean. But isnāt next steps a great phrase to hear! Finally weāre all so close to the end of this nasty chemo stuff xx
Does anyone know anything about how to get the NHS wig prescription? I spoke to a nurse during chemo and she said sheād find out about it for me. She left me a voicemail but Iāve no number to call back. I went to a wig place yesterday, my crown is so bare I canāt leave it as it is so as my sister is staying with me for a couple of weeks I though Iād make use of the emotional support Iām back up there Friday week for a proper fitting appointment.
Had MRI and CT yesterday. The doctor very helpfully said in front of my mother that there was no sign of metastases. She hadnāt been thinking about that possibility at all, so we then had a row about me holding info back 
) so I think basically the answer is my bowels hate chemo and thereās nothing I can do to stop all this temperature spiking and needing antibiotics again. Waiting for doctors round and praying heāll release me today, Iām now going stir crazy in a ward of ladies who are all currently sleeping (11.25am) I look like such a fraud in comparison!
glad your getting home Hawketower 
Iām absolutely knackered, so taking a couple of days off before I go back to work Wednesday. Hope your chemo goes ok tomorrow, xx