Well glad you have got the results Jean. Is it what you expected? Like you say the boob is gone now in the interest of survival. Is there any reason why you don’t have to have radiotherapy? I know everyone’s treatment is different and I know why they are throwing the lot at me but must confess to not really understanding why some have rads and others don’t.
I do know what you mean about needing a bit of a breather. It makes perfect sense. We have had a traumatic few months with lots of ups and downs. Take some time away from all this and just see how you get on. After some space you might think yes I’m ready for the next step of a recon or might think I’m fine just as I am. Either way thinking time is good.
I’m pleased for you Jean that there is an end in sight. X
Once all of us are done it would be lovely to meet everyone on here face to face xx
I love a bit of philosophical Jean and I agree with what you say life is for living, we didn’t know our expiry date before all of this and that it’s not worth wasting time on negative thoughts of reoccurance. I just really hope I can carry on with that way of thinking after all of this.
I am still taking pain killers every 4 hours, mostly paracetamol but maybe once a day co codamol. I still feel really tender and swollen, how long does this last? I’m getting a bit fed up with it all now and want to feel myself again. I’m noticing all of the lingering chemo SE’s too which isn’t helping. I lay in bed and cried last night, feeling sorry for myself for feeling sore, having ugly fuzzy hair, diarrhoea for 14 weeks, neuropathy in my fingers tips and toes and a mouth that tastes of battery acid! I feel better in my head today but I am not healing fast enough!
Glad you are sticking around Jean xx
Hi Feenix so pleased about your results, that is a relief and now you can move forward and get that bike and do all those lovely things. I hope you do something wonderful to celebrate . Your wise words really inspired me to look forward and not dwell on what ifs… Thank you for that xx
Michelle, sorry to hear you are feeling fed up it is usual to feel that way, .i remember after my op i sat in bed crying and said i felt ljke an old lady and that was withouth chemo in the mix. Take it slowly day by day and you’ll get there xxx i geg the battery acid mouth… Bloody horrible I want my mouth back please!!!
Thanks everyone I really appreciate your kind and supportive words, it makes such a difference xx
Hi feenix thanks for kind words, having an emotional day today, jusg fed ip of feeling poorly. Rang help line and they said it’s because my immune is low thats tts taking a while to clear, salt water washes and wait it out I’m afraid. Sendjng family our for ice lollies as theg help too. I think we all expect to feel differentlg whe .We get some good news or reach a milestone jn this journey. I thought i wojkd be more relieved to be half wah through chemo but actually felt quite flat (to use your pun). I have looked up a moving on course run bh Macmillan for when i finish treatment as i think ill need some help emotionally with that. Aparrentlh its so comon to fjnd that the most diffiicukt time in fhis as you can feel very alone! .
I woukd live to meet up with you all sometime too, e must do it. kip
Sorry to hear you are feeling bad. These are emotional times. Jena is right chemo really is an endurance test. I hope you feel better soon and good luck with results day tomorrow x
Dear Kip, Feenix, Michelle, cdc . . .
You are some of the constants in my coming on to the forum, and sometimes I have felt like I am eavesdropping, as you have such a camaraderie between you all . . . of course there are other names I have seen aplenty, but it seems that you are the presence at the moment . .
I was diagnosed in March with IDC, found ‘small’ lump in right breast, wasn’t looking, just fumbled across it, unfortunately. I’m 63 now, and me and doctors have as infrequent a relationship as I can manage. In the past 6 months, I unfortunately think I have had my fair share from the NHS, and I would prefer to see as little as possible of them from now on!
I never did checks, never went ‘looking for trouble’, because this was not on my agenda! I won’t go into the ins and outs of my diagnosis, but it was a Grade 3 IDC, 2.2cm, ER8, and present in one node of the eleven removed when I had a WLE and ancillary clearance in early May. My ‘margins’ were not brilliant, but I chose to take my own path and risks, and settle for 20 zaps of radiotherapy, and continue on Letrozole.
Anyway, this isn’t about me, I just wanted to explain why I have been on the edges looking in. All I knew was, The Lump had to go, and being incredibly private, very few people in my life know about the whole situation, and looking at me would never guess. One of the first threads I ever looked at was May 2018 Surgery.
I know you don’t do ‘brave’ - but you are stronger than you know, and your openness and realities of your treatments must have helped so many people. I feel a warmth between you all, and that’s lovely. I wanted you to know that ladies like you are complete shining stars - whether you want to hear that or not.
I wish you Feenix all the very best with onwards and upwards. And the very best to you all. xx
Paulus what a lovely message thank you but also I must agree with you that May Surgery is a very warm and supportive place to be. I am also a ‘gatecrasher’ here as I have only just had my surgery. Like you I was diagnosed in March and one of the first people I ‘spoke’ to was Feenix. Those early days were very dark and even though she must have felt as terrified as I was I felt like she put a big arm around me. (Thanks Jean x) Even though our treatments have gone different ways I’m pleased we have kept contact and I’ve become part of this very supportive group.
Kip - my previous message was for you and good luck for GCSE results tomorrow! Sorry I didn’t make it very clear! How are you feeling now? I know I’ve mentioned it before about steroids affecting the back of my mouth and swallowing but I also started taking medication for oral thrush and difflam, it didn’t seem to help and then realised it was the steroids. I didn’t have ulcers or anything and if a Dr has looked at your mouth I’m sure they know what they are looking for but just thought I would mention it.
Claire I’m sure 4 xT does seem like a long haul at the moment, but just keep ticking off each day. I need to follow this advice myself!! I had 4 x T but was lucky with regards to se’s I hope you will be too.
I have got the BECCA app. I read it a lot when I first got it and there is some good stuff on there but if I’m honest I’m not sure how it will help me at the end of all of this. I have signed up to a friends and family moving forward course run by BCC. I’m going with OH in September it’s a one off session and I’m interested to hear what they say. There is a course they offer once a week over four weeks which I might do, even if it’s just to meet and speak to others who have been through this. I really believe you can’t get too much help when it comes to all of this.
Hope every one is feeling ok xx
Hi Feenix,
Just popped in to say how pleased for you I am. Take your great news and bloody well enjoy it.
Sally x
Hi Paulus may i say a big thank you for your lovely post, as j am currently in hospital with neutropenia i am quite low and yiur kinds words meant so much. I too skirted on the outside of the forums initially but they have proved a ljfeline in this difficult time. Im glad they have helped.
I was admitted yesterday with neuts 0.1 so having IV antibiotics and have to remain in isolation until rhey come back up. Ive missed my son getting his gcse results today whixh was sad bjt he did realh well, very proud mummy.
This chemo cycke has bee .so tough just hooe tomorrow the old mouth gets its act together and heals up
Kip so sorry hear you are suffering so much. At least you are I. The right place where they can monitor you. I hope the bloods get back up soon and you feel better. I understand how you must feel to have missed your sons results but great news he has done well and you can celebrate when you are feeling better. Thinking of you and wishing you a speedy recovery x
Hi thanks Feenix and Michelle… Woken up today with thick white tongue again … Please come back taste buds i miss you… Casa NHS no fun ?
It doesn’t sound fun at all! Hope you feel better today x
Oh Kip I’m sorry you are really not where you want to be right now - speedy mending and home soon.
And big congrats to your son - it makes us so proud when our children do well - because it’s a ‘feel good’ for everyone, and we know that they are setting their futures and opening doors for themselves. Have a wonderful celebrate as soon as you can x
Hi Kip glad you are home, take it easy and hope you feel better x
Well done for getting on your bike Jean! You have to start somewhere. I know what you mean about depleted muscles I was shocked at my lack of fitness when I did a couple of runs between chemo and surgery, but there’s only one way to change that…! X
Hi Claire hope you got a better nights sleep last night. Are you on the steroids at the moment? I only ever used to get max of 5 hours then no matter what I tried. I read here somewhere that some onc’s Phase the steroids so you have 6 on day one the 5 then 4 the next day and so on. Interesting idea, I can’t even remember why you need steroids on T I know on FEC it is sickness but a different reason in T. Sorry I’m like that full of useless info! I never remember the important bits or the punchline of a joke!! Anyway hope you are doing ok x
Hi Jean,
Pain is a lot more manageable, just discomfort. I haven’t had any pain killers yet today. I went out with my dog walkers yesterday, it was so good! Being out of the house and chatting to friends the perfect combination. My dog is still at my mums as I didn’t fancy her being around for the first couple of weeks. Mum is bringing her back on Wed. I’m having the clips out of my wound tom. Did you have that? Does it hurt?! I like to prepare myself! I’m looking forward to them being out, the dressings off and seeing how it’s looking. I’ve already noticed my boob is smaller than the other side but I don’t know if that will notice to others. It feels like progress.
OH and I have booked a mini break on 14/9 to San Sebastian. It was really good value! I get my results on 13th, so we’ll either be celebrating or preparing for more surgery. Fingers crossed very tightly.
Well done for getting back on the bike, and no jelly legs already! Also good for you helping in the garden. I had said I’d help OH in garden (keep him company) but when it came to it I felt cold and couldn’t be bothered. I seem to go through spurts of wanting to do stuff and can’t be bothered.
Enjoy the bank holiday and keep cycling! X
Hope everyone else is doing ok x
Hey Feenix goid to see you re out on your bike and enjoying life well done. Michelle you sound like you are making progress to thats brill!! Id llove a holiday at the moment but we will be waiting til new year i think when hopefully all this done. Just want my mouth to gef back to normal before next T so i can enjoy some food for once. So tired too slept 9 houes last night but still feel ?
Well clips out, the nurse was lovely, I was even nervous about the plasters being taken off but none of it hurt at all! My boob is slightly smaller and there is a dip but my nipple is still there and the 3 scars are all very neat, overall I’m pleased with it. I don’t know if the difference in size is worth bothering with fillers or a decrease on the other side I’ll have to see. Another milestone ticked off! I love the cake comparisons Jean, I’m not sure what I would liken mine to!
Great news about your gallbladder Claire, so nice to have confirmation isn’t it? My OH says I’ve had the full MOT now with scans etc.
Kip it sounds like you are really struggling with T, I hope your good week is good and your taste buds return before your next cycle.
Jean if your weather has been anything like here I can’t imaging you have done much cycling today! I hope you are enjoying the weekend and taking it easy x
Hi Feenix, I think I have decided to have them out, I prefer the thought that they are gone I think. I have appointment tomorrow with Onc so will discuss it a bit with her, I can’t remember if they said full removal or just the first level… pretty sure just first level but need to go over that with her and the benefits/negatives to it all. Also hoping she reduces my level of chemo for next time as still have no taste buds and sore tongue and only 6 days til next chemo… yukkk.
Hello, well chat with ONC didn’t really help much, I have to see the surgical team on 19th Sept to have a better discussion as to what they suggest for node removal. She wasn’t sure whether they want to take level 1, 2 or or all 3? She thinks possibly 1 & 2 and then rads to collar bone for safety? So have to wait and see what surgeon suggests. Also double checked on size of lump they removed as there was some debate. Apparently it was initially 22mm but when checked under microscope it was 55mm… thats some discrepancy but she explained that the lump would have had “feelers” and bits of fatty tissue and scarring which may have made it bigger and they like to use the largest measurements when planning treatment to ensure they do whats best. Thankfully still Grade 2 though. And as she said, its neither hear nor there as it has been removed anyway. So have to wait until Sept to find out next step but she said it shoud take place 3-4 weeks post chemo and then roughly 4 weeks post op for rads to start, so hoping to be all finished by Xmas.
So more waiting around I guess, but still have 2 chemos to deal wiith before that, she may reduce the dose of the last one if my fingers still feel numb.
Hope you are all feeling well and recovering nicely!
KIp xxx