Surgery May 2018

Thanks, now back at the computer, seems like I’ve never been away.  Not much work to do as the boss is on holiday this week, so easing in slowly.   Woke up feeling aprenhsive today, big results appointment looming has set the demons racing but decided to wear my new lacy bra today just to feel “womanly” again, amazing what a little lift things like that can do… made a real difference to wearing my post op sports ones!!  One more question for you all… is it ok to wear deodorant on the op side now (12 days post op and no cuts under there)?  Silly question, but have avoided it so far and didn’t want to risk it… if so… any recommendations on deodorants… should it be paraben free etc?  

Hope everyone had an ok bank holiday weekend. The weather was dreadful in parts of the country. Luckily it was ok where I am … very sunny initially then dull and dreary. 

Xx

Thanks Feenix, I’ll look out for that deodorant… your comment about ChewBacca armpits made me laugh… mine were too but thankfully got that in hand now, what a relief.   Weather was gorgeous here, albeit a little too hot for sweaty non deodorised armpits! 

Hi all. I have also decided to go back to work after half term until chemo starts. I haven’t been able to face it since I was diagnosed but now treatment is underway I feel more positive. It is a light time of year, but I will be interested what my line manager’s interpretation of ‘reasonable adjustment ‘ is! Not the same as mine I’ll bet!!

Hey Feenix, re the Chewbacca armpits, it won’t be a problem after chemo! BC just keeps giving ? x

Sorry Ktk I didn’t realise you were having chemo either., how were the res5 of your results?  Big hugs

Hope everyone enjoyed the bank holiday. I Slept all weekend but thankfully felt better today despite getting no sleep and feeling nauseous (caused by tramadol I think). Very pleased my seromas seem to be going down already. Hope your BCN can reassure you on Thursday Kip and you results appointment goes well. After visiting the hospital to get new Pico dressings, talk to my surgeon then spending a couple of hours at ‘Breast school’ (for those recently diagnosed with BC and where everyone ended up crying but was supportive) I managed to get away with my family and I’m now in blustery Norfolk for a few nights. When did you find out about the chemo ktk? Do you know when you will start and what drugs you’re having? Im still waiting for final histology reports (although I do know they found areas of DCIS that did not show up on original biopsies) and also for my wounds to heal sufficiently before I see the oncologist. Been checking out scarves/hats as I don’t think I can face cold-capping. I’m seriously scared about the side effects but hoping the chemo threads will be full of helpful suggestions. Useful to know about the deodorant Feenix. Good luck for those of you having surgery and/or getting results this week. I will be keeping everything crossed for you. I think it is taking me a little longer to recover from my re-excision but I’m feeling ok 5 days on and if I have clear margins I will be so happy!

Hi all. At my meeting I was told that I would ‘be offered chemo’. I am still waiting for the appointment with the oncologist but I am inclined to hit this thing with everything while I can. I’ll keep you updated when I know more. Rads after that.

Glad you had a good weekend cdc. X

Breast School is the name Barts hospital give to their initial workshop for people who have been diagnosed. It was a series of talks on different aspects of treatments. Also a chance to have any questions answered and an opportunity to meet others. Unfortunately it over ran and I had to leave before I’d had a chance to ask about chemotherapy but there are a number of workshops on offer at Maggies and Macmillan so I’ve been told I can attend another time. One brave lady told us about her ‘journey’ and another about her recurrence. I don’t know quite what set us off but one after the other all the participants stated to cry. At least it was a safe place to do so and we were laughing by the end. It’s the first workshop type thing I’ve been to but I’m definitely going to try some more including the exercise classes and pampering treatments offered at Haven when I’m feeling a bit more up to it. Weather not great but it certainly is good to be away!! How did test driving cars go?? I’m ashamed to say I became phobic after a particularly bad experience with an instructor and never learned to drive which is a complete b*****er now but at least there are a huge amount of transport options where I live in London. I think taxis will be my friends during treatment!! Hope weather cheers up for everyone!

Sounds like we’re on a similar path ktk although I’ve been told I’m definitely having chemo. I read something somewhere about how the oncologists base their decisions on percentage on whether it will be helpful. Some people are told they don’t need it, others are given a choice and some will definitely have it. Will see if I can dig it out the information. I wasn’t sure I’d have to have it but found out I am considered Stage 3 in the way the hospital work things out but Stage 2b in Macmillan and BreastCancerCare Staging. Don’t know if that’s relevant. I wonder if the fact I have bilateral cancer and have a very high familial risk has influenced their decision? I’m sure I’ll find out at my first oncology meeting. Just hope my oncologist is as nice and helpful as my surgeon. Sounds odd but I’ll really miss her! I will also have radiotherapy after chemo then tamoxifen. It all feels a bit of a slog but like you everything is being thrown at ‘it’ so that can only be a good thing! Hope you have a good half-term and getting back to work is ok. Let us know how it goes., I do mainly voluntary work but was also tutoring a Year 4 boy who has really fallen behind at school. Haven’t been able to work with him for last 4 weeks but think I’ll offer to do a few sessions with him after the holidays as I really miss working out him and he was making real progress. Take care xxx

Hi CDC. Because I am triple negative the options are limited and won’t respond to hormones etc. I just see the chemo as belt and braces.

My daughter has been abroad for a year and comes back next week. I can’t wait to see her. She knows nothing about this and I am dreading telling her. It will be so good to have her home!

Breast School sounds good, not sure they offer anything like that in Ipswich.   Its great CDC and KTK that you both sound positive about the chemo, you’re rights its best to hit with everything they can, I may well be joining you tomorrow, all we can take away from it is that everyone on the chemo threads says “its doable”.  Enjoy Norfolk and I’ll keep you posted on my results and what my “group physio” session is like later today… not sure what to expect from that!

Hi, just been to the Group session, turned out to be quite good.  6 of us all at same stage in diagnosis, post surgery (one had had chemo first) and one starting chemo tomorrow.  Just informal chat about what groups are available and support out there, turns out to be quite a lot in my area.  Got invited to a pamper day, there’s free exercise groups, discounted gym sessions, book clubs, art clubs etc and a fashion evening.   Didn’t realise what was around.  Once I have a treatment course I may decide to go to the pamper day, useful if you are having chemo, the lady who has just finished her chemo said she found it very useful for tips on which make ups to use, how to apply eyebrows etc and was good just to have some me time.  I even directed one of the ladies on to this forum as she is really struggling mentally with the whole diagnosis and I think coudl do with some support from fellow sufferers.  I told her we have all had a rant and wobble on here and we all understand.  

Have a good evening everyone xx

 

 

Hi mini mad. Thank you so much for responding. It is really helpful to have such input. May I ask what your original diagnosis was? I am triple negative, stage 3. I have had TM surgery with breast reduction and lymph nodes removed. The surgery has been successful. Were you given any percentages? I am really interested to know how you weighed up your options. Thanks. Kx

Hi,  just got back from hospital and feeling absolutely shell shocked.   Full diagnosis, Grade 2 invasive ductual 26mm lump, some cells in the breast too and sentinel node and 2 other nodes had cancer cells.   The nodes were not enlarged but did contain some cancer cells which he said in the scheme of things was good as they were not at the enlarged stage.  I have been told I have to have chemo (6 x FEC-T), rads and then possible surgery for removal of remaining nodes and then onto Tamoxifen for 5 years so the whole package for me.   Now waiting for an appointment for CT scan and bone scan which is more scary waiting.

 

Am feeling absolutely devasted and so so scared.  Haven’t felt this way since initial diagnosis and the most annoying thing is I feel so well at present and know I will soon be feeling lousy.   Have come away with loads of leaflets for wigs etc and don’t know where to begin with it all.   Trying to remain positive but its feeling quite out of reach.   Consultant said I would be fine and that this cancer is treatable etc etc but it just doesn’t feel it.

Hi Kip

So sorry to hear all this. It’s so much to deal with. I feel the same with months and months of treatment ahead and then tamoxifen for years. I hope we can support other along the way. I had been thinking I might say no to chemo but my husband received a number of calls from the hospital whilst I was testing as I’ve been feeling very poorly. One was to tell me I have an appointment with the oncologist on Tuesday! It’s not to discuss specific treatment and timing as I haven’t got my final histology results yet (get those on Friday) but an introductory consultation. I think I’m going to look at some scarves/hats/wigs too in the hope I’ll feel somewhat prepared and in control. Having said that losing my hair is not what I’m worried it’s the nausea and fatigue that scares me. Sending huge sympathetic hugs and hope you can have a relaxing evening after such a difficult day. Take care xxx

Hi Feenix

Thanks for the information. It’s really cheered me up to think one day I might have a chance to explore all theses places.

I’m glad you’re feeling ok after further surgery. Do take it very, very easy. I felt great immediately after my re-excision but have really struggled this week. I realised today I’ve got to take more care as after a wonderful, but full, day in Kings Kynn yesterday I woke up with a hideous migraine and vomiting. Only just got out of bed now. I think it was my body’s way of saying ‘Oy what do you think you’re playing at?!’. It’s back to regular rest periods for me. Hope you recover well and look after yourself. Hugs and best wishes xx

Cdc, we will definitely be in this together and help each other through.  It does seem an endless road ahead but we will get there.  I am scared of the side effects too just not knowing what to expect is awful, the hair thing just doesn’t seem real… In fact none of this does… Have you had to have a bone scan?

Hi ktk

Yes we’ll definitely be in this together. I haven’t had a bone scan or CT scan yet. I will see if these are mentioned when I see the oncologist for the first time. Are they checking for further lymph node involvement? I only have micromets in lymph node on one side and this is considered negative for spread. My mum had both types of scan before she started radiotherapy. Did they give you a reason for having them before chemo? Thanks for giving me the heads up as it won’t be unexpected if I hear them mentioned on Tuesday. I was thinking how surreal this all feels earlier today. Even when I think of the surgery it almost feels like it happened to someone else but to be fair I’m still covered in dressings so haven’t seen any scars. I have another dressing change tomorrow and my surgeon says I can disconnect the PICO motors and shower in the morning as I’ll get new ones in the afternoon. I cannot wait as I haven’t showered since 10th May. Going to make the most of simple pleasures. Hope you are having a peaceful evening. Take care and big hugs xxx

The scans are standard procedure when found in nodes to check for spread, more scariness to worry about,  enjoy that shower… Little pleasures as they say xxx 

Hi Feenix
So glad your OH is so helpful. To be fair my OH has been amazing too but has so much on his plate. Tomorrow he has to get his oldest child (he has 2 from a previous marriage) to a very important appointment but thankfully my Mum and daughter will come to the hospital with me. I’m a bit wobbly physically and mentally at the moment so unable to go alone.

Interesting to hear about eating well and the protein as I’m pescatarian and food has been an issue during recovery. I’ve been told before to try and eat more protein but have had very little appetite recently. What sources of protein do you enjoy?

I’m also going to get some jigsaws. I had a major Jaw operation in my 20s and you’ve reninded me that jigsaws were about the only things I could concentrate on!

A trip to see relatives in India will be amazing and you will get there eventually. It’s great to think of all the travelling we’ll do once we get through this and beat this drafted disease. I’ve realised I need to be closer to home for my little jaunts in the near future tho as my family and I felt very worried today when I was so sick. Just wanted the comfort of me being in my own bed and near the hospital. I’m going to really listen to advice and my own body from now on and be much more careful.

Take care and hope you’re not too uncomfortable.

Positive vibes and hugs to you too xxx