Ok actually thank you! Keeping busy and trying to be positive. Even though my treatment feels like a marathon, it’s like each of these stages is a checkpoint so that is good. Though have been in hospital 4 days this week for various appointments. Trying not to think of the surgery in too much detail, but hoping CS surgery has prepared me well. Going to use it as an excuse to chill and watch lots of TV. I have bought some mastectomy bras but not sure if they’re too tight or not for with swelling.
Hope everyone else is doing well whether you’re during chemo or post! It is such a long journey isn’t it?
I just counted my bottom lashes and I have 3 last ones standing
Hooray @wibbles ! So glad you’re at the end. All the best vibes for the last wave of side effects. Being past my usual ‘next dose’ day has been slightly weird, seeing which side effects are hanging around.
@jululemon good luck for your surgery - I’m in the surgery queue after @clarabelle1 and @foxgem - just been for my pre op appointments today.
Had my first Phesgo only dose on weds, no noticeable side effects yesterday but woke up feeling some vertigo/dizziness and general ‘not rightness’. Have chalked it up to getting dehydrated overnight after lots of hot flushing - so grim. Feel a lot better now though.
Maybe connected to the hot flushes/period chat up thread, has anyone had any issues with delicate or thinned skin/dryness around the lady parts? This has recently cropped up, or perhaps gotten worse. If so, any recommendations on specialist moisturiser? Am going to get something but just wondering whether it’s worth ordering something specific or whether I just wander the aisles of boots and see what I can find.
@foxgem agree any prehab we are able to manage between chemo and surgery will aid us all in our post surgery recovery’s. Thank you for being so inspirational when you have had your back pinned against the wall too many times thanks to sneaky genes making your journey more complex to navigate.
@jululemon i managed to find an independant spcilist lingerie shop in Worcester that offers a one stop for woman dealing with cancer in a discrete setting. They fitted me for a post surgery bra and tbh trying a range of makes on physically with a person not only trained to fit post surgery and masectomy bras but had bothered to listen to what I needed for a single flat closure and auxiliary lymph node clearance. Because that can cause swelling they recommended I went up a size as the exact size would not have give where I needed it. The ones I thought would work did not and the one I thought would not was super comfy. Yes I plan to go back so l have two post surgery. Took it in to show the BCN at my oncology appointment and she was very impressed. Might be worth taking in what you have and showing the BCN as they will have a good idea of what would work for you. They can also advise which would be the best post surgery bra for you bring in with you and which would be better to use as you start to heal.
Still feels strange thinking about surgery rather than next chemo for now.
@felineoptimist agree, this is what you want. I think it’s fantastic. And you’ll get it free on prescription (anyone with a cancer diagnosis should have a prescription charges exemption card).
Second Sam’s recommendation. Chemotheraphy has left me as crispy dry everywhere as the crypt keeper. My oncologist recommended I try both YES and SYLK after they checked with the onco gyni as to what they could recommend for me as my skin was being uber reactive and they did not want to add to the side effects that made my life hell. they do not contain anything my sulky skin was liable to react to so I tried both. Have to say it really helps my skin has not reacted and that is so much better than trial and error with pick up in any shop versions that made everything so much worse.
How are finding things @katie91 . Im session 14 today out of 15 (should have finished today but my first session got cancelled due to machines breaking down) Im now a bit red but know things can peak after trratment.
Then onto my oncologist appointment 20th to find out about hormone therapy. Hoping its just a tablet.
Does anyone have any experience in hormone therapy yet, no one has ever mentioned overian suppression to me. How is everyone going???
@sammy75 I am supposed to be taking Letrozole (hormone blocker) but I’m putting off making a decision while I get a second opinion (privately unfortunately- I’m using the money I would have spent on holidays these last 10 months!), as I’ve osteopenia and raised cholesterol both of which will be made worse by a hormone blocker. There are other side effects too which aren’t good. So for now I’m not taking them. They only give me an added 2% on my Predict score over 10 years so I don’t know if it’s worth it for me….
I didn’t need an ovary suppressant as I was already post menopause.
@sam1204 thank you for the reply. My appointment is 20th July and I have to admit Im a little worried. I always knew a hormone tablet was part of my plan but dont know what route they are going to take as I was peri menapausal before chemo, now my periods have stopped. So was just expecting Tamoxifen as no blood tests are booked in before my appointment so he cant be sure im post.
I had a dexa scan back in January and all was good so I really sorry to hear yoir having to do things privately.
Think I just concerned about having injections on top of hormones
Hi @sammy75 . My friend had Hormone Blocking Therapy for 5 yrs, post full mastectomy. She could have just had a Lumpectomy as the cancer was smaller, but she wanted everything gone. She had no chemo, no Radiotherapy. She was in her 30s.
She never had any major problems with HBlockers. Save early menopause. But had luckily had her family by then.
She was cancer free in 5 years. That was over 20 years ago. She is still alive.
Some drugs are better than others. Some HBlockers have more side effects to others. And everyone is different. So react differently. Which makes it difficult to judge. But she is one long term success story. Shes never had recurrence.
But I completely understand ladies fears about the unknown. Especially when Side Effects seem so daunting. And for some ladies…have been hard to navigate.
We have to do whats right for ourselves. Speak to BCN Nurses and MacMillan. Worth contacting Someone Like Me BCN Volunteer whos had Hormone Blockers. They may also have someone whos not had HB, so you can get a balanced view.
Giving you strength in going through your next phase.
Fir hot flushes, I’ve heard acupuncture is very effective. 2 friends had it done at the hospital Macmillan centre and found it to work exceptionally well.
Gosh, I had over 100 new posts to catch up on! Sounds like lots of people are navigating the decisions about surgery, hormone blockers etc. I had my single mastectomy in December and finished chemo 3 weeks ago. I am starting to feel more energy coming back which is good.
Re surgery, I opted to stay flat as I’m hoping for a delayed diep. I made this decision pre bowel cancer diagnosis and I’m very much hoping that’s still possible after that. Tbh, I wish I’d gone with an instant reconstruction using an implant. I didn’t at the time as I wanted the cancer gone and my BMI was 30.4, so a tiny bit over 30 so they wouldn’t do it then. I’m now facing the prospect of potentially having to live flat forever, with hindsight if I’d had the reconstruction at the time and it had failed then yes more surgery but now I may be flat forever. It’s actually the part of the whole cancer crap I find the hardest. One day the memories of chemo and now radiotherapy will fade but every time I look in the mirror I’ll have a 10 inch reminder. Many people cope better with being flat, and it’s the right decision for them. At the time it was for me too, but now the option of having a boob might not be there for me so I feel like I made the wrong decision.
On a lighter note I started radiotherapy on Monday, so I’ve now done 5 of 15 sessions. It’s been absolutely fine. I cried at the end of the first one as it was the first time I’d been in my own head about my treatment. Chemo is do busy you don’t get to think what either nurses prodding and poking, people chatting to you etc, but radiotherapy is a proper 10 minutes, on your own, no distraction time. The radiographers were so kind though and really reassured me. 2nd one onwards absolutely fine though! I’ve got 10 more to go. I started It 2 weeks post chemo because the two oncology teams (breast & bowel) want to get on with my bowel surgery and any subsequent treatment. The radiotherapy is affecting the cording in my armpit though so I’m trying to do my stretches again. For those approaching surgery - DO NOT SCRIMP ON THE EXERCISES!! They are the most important part of your surgery recovery.
I’ve got a CT scan to plan my bowel surgery in a week’s time. No contrast dye though, makes me spotty! Should meet my surgeon a week or so after. The nurse I spoke to said that it’ll likely be 4 to 6 weeks later that I’ll have surgery so looking like the start of September.
@2kittens Ìt might be worth getting in touch with flat friends for some support. Yes they give support to those who like me chose flat as their preference but they also give support to woman who could be facing flat forever due to medical reasons, those tryingto come with being flat as they wait for a delayed reconstruction for some months and for those. With single flat SMX and DMX. Losing a boob to breast cancer can really hit hard and challenge your sense of womanhood and worth. My ops not for five weeks and four days (you can tell lam counting down) and I may have chosen a flat closure but l still cry at the idea l have agreed to have a hunk of me surgically removed and nothing will ever look or feel the same. Happy to wave goodbye to the source of this years misery though but sad to become a single boober not from choice.
Hope all goes well for you and that you can get to the point you can have a delayed DIEP reconstruction later.
of course your feelings are completely expected and valid. It might not happen this year but I am sure they will do the delayed reconstruction. Its all part of the breast cancer care package! You’ve just got some healing to do first. Get a billion steps in to keep your strength up, eat as much healing foods as possible and get through this next surgery, then you can focus on rebuilding
Still have to wait for post surgery histology report. If chemo has nailed the unwanted lodger then it will be targetted theraphy for her3+ for12 months. If it has not looking at further 12 months with chemo. Oncologist has said they do not anticipate it to be so brutal. I can only hope not as this time round the peripheral neuropathy is the last thing I want as it stops me from thinking of being able to work as a broiderer and artist. Both of which need fine motor skills. For now I plan to grab the break and knit and crochet.
Managed to surpass myself and not only got up and dressed on day4 post chemo I also made it to church and meet up with a dear friend l have not seen in months. She had not dared contact me as she knew iwas being hit hard by the side effects from chemo and kept having allergic reactions to the chemo drugs no matter what. Also meet-up with a younger mum who was so happy to finally talk to another person who knows the cancer centre at that same hospital. Shared tips on getting parking and where to find things. Meeting up with someone who ‘gets’ all the worry whilst trying to work and look after a family was helpful for both of us as we did not need to play and say nice over how hard it can be. She cannot have any chemo nor radiotherapy due to her previous health conditions ruling Ìt out and has full body scans every12 months in the hope the surgery she has had is still working. Like me she can call her oncologist at any point she has any concerns and they see and check her ASAP. very different to her previous hospital. TBH I am beginning to think I am under one of the better cancer teams in the country and I am so glad I am under them and not the local ones even if the first surgeon I meet was old school with a patronising attitude.
Ave had an awful two days trying to manage severe panic from trauma but still managed to make surgical pre assessment booking in appointment. Within nano seconds the ward sister doing the booking spotted I was more than struggling with ‘just presurgery anxiety’. Turns out they too have trauma from life threatening surgery so gave me time and went very slowly. Pointed out theraphy is darn hard work even without chemo on top and that they were so pleased I had fought to start to access help. They also understood why allergies can be amplified by chemotherapy and agreed they would ensure all relevant info to drug and dressings allergies WILL be taken seriously as they are the lead theatre nurse for the surgeon on the day. Told me to keep working with the trauma therapist the local charity run cancer centre had arranged for me as this time l managed to answer some questions and knew some of the self grounding stratergies when l started to zone out on them. They are liaising with the lead surgeon as they are their lead theatre nurse and will leave notes for anaesthetists team. Bloods will be taken on the 27th as planned with some extra screening checks to reduce risk of another life threatening haemorrhage during surgery. Full blood cross matching booked for the 17th August. They made me the earliest appointment they had and plan to do that test themselves rather than leave someone else to do it as they have trauma training as part off their role as a theatre nurse who covers in recovery and they had conch about how I could react to blood that close o surgery. Plan on keeping my eyes tight shut and using distraction method l have been taught to get through it.
Now home, okay crying like anything as got super stressed as there was a blood biker in front of me on the entrance to the hospital which threw me right back. Will ask therapist for something that can help me cope with that as there was a blood biker runner outside the theatre when I nearly bled out with a cat 1 preterm c/sec. I may be an adult but anything to do with surgery leaves me a shaking trauma response mess and that is just walking through the doors and tbh by the time l reached the pre-surgery outpatients l could not hide l had some pretty deep trauma responses I can no longer hide thanks to just seeing a blood biker. Elder DD (nurse) came down from her ward to liase with theatre nurse re surgical dressings and closures and has been approved for emergency annual leave so she can help me in the first week.
DH has now made me a latte and younger DD (chef) is not working today and has offered to cook whilst finding some archeological programmes on Prime to point my brain at. Going to accept all the extra support I have been offered by the charity cancer care centre, family, friends and the hospital and aim to get through surgery in August. Hoping my bloods will behave themselves enough I do get those few days away for R&R.
of course your feelings are completely expected and valid. It might not happen this year but I am sure they will do the delayed reconstruction. Its all part of the breast cancer care package! You’ve just got some healing to do first. Get a billion steps in to keep your strength up, eat as much healing foods as possible and get through this next surgery, then you can focus on rebuilding 
