Sorry I have not been on for a while. I am still at home recovering from my full node clearance and just taking each day by day resting and doing some household chores in between ( light chores)
My underarm is still sore and puffy . It has now been 5 weeks since my operation.
I have been out and about and found being out for most the day quite exhausting! I have no idea what it will be like when I return to work and will have to go back to doing a phased return again.
My tamoxifen tablets are now kicking in and I seem to be suffering from pre- menopausal symptons such as night sweats , headaches , tiredness and fatigue. I do sometimes forget to take them daily and find myself having to take them at different times during the day.
I am still waiting to hear from the oncologist and when my radiotheraphy sessions are to commence however , think this will be October time.
My body is exhausted having had to go through 2 operations ( May & August) and I feel as if I have aged 10 years. Not feeling good in myself at all . I am doing the arm exercises and just that. My weight is suffering as I continue to 'comfort eat' with me piling on the pounds and lack of exercise . The motivation I used to have when I was well before my operations has just gone out the window and wonder whether it will be restored.
My GP has told me not to worry too much about my weight for the time being and just concentrate on healing and get through all the treatments. Once this has been completed, I can start to work on myself and review my levels of fitness and diet.
At the moment , I dont want to engage in the activities I used to do when I was well i.e social gatherings with friends , etc as I dont mentally feel up to it and I know it will take a long time for things to settle and get back to normal . I think I am still feeling a bit low/ depressed after everything my body has gone through however , I know that I need to snap out of this.
For now , I will just continue to be kind to my body and recover until I am well enough and hopefully go back to being that person I was before my cancer diagnosis
I hope you are all recovering well and for those who have had recent ops, things in time will get better . Time is a healer . We can all get through this 🙂
Sending you all big hugs
How are you today SusieOne? It does sound really horrible having that infection - hope you've got some relief now or have at least managed to speak to your nurse to get checked out. I'm totally paranoid about infections so really feel for you.
I'm feeling a bit off today - think it's just post-op fatigue but am annoyed with myself for not feeling up to go up to the shops like I had planned to today. We are our own worst judges aren't we?!
Wishing everyone well today xx
Susieone - how's the infection? Hope you're feeling a bit better and symptoms have subsided. I had hard lumps at the site of my surgery but I was told that this was the scar tissue, rather than infection. I think some hard lumps might stay for some while. But anyway, hope you're doing ok and get some advice and support from your BCN soon so you don't feel worried about the infection being anything more problematic.
My second op on Friday went ok - it was much quicker as I was at the top of the surgeon's list and didn't have to have the wire insertion or nuclear injection so I was home by mid afternoon. My anaesthetist was lovely and made sure that I had enough anti-nausea meds so I wasn't sick and dizzy like I was last time.
Since I've been home I've been in a bit more pain than last time, I think because it's reopened wounds that were healed up so nerves are having to fight to reconnect again. And I keep forgetting that I'm back at stage one in terms of post-op recovery and keep trying to do the things that I was doing last week at week 4 after my first op. So have to remind myself that I need to take it as easy as I did immediately after the first op. That's hard. Physically and emotionally as I feel like I haven't made progress. And I'm back to worrying about results again too. Sigh.
Oh and this time the nurse told me definitely not to shower (unlike my surgeon's first op advice to let it all get wet). So better advice wound wise but I'm finding not being able to wash my hair a bit depressing as it just makes me feel horrible.
Anyway, enough whinging. My brother and friend have both gone home now so I'm back to being on my own and will soon get back into the swing of things again I'm sure.
Hope everyone else is well and enjoying the glorious weather we're having (at least down here in London). Can't believe it's already September!
Yes Quaggie, I am looking out for you too, hoping all went well and you are mending nicely. Hope you get some rest and time to enjoy these lovely autumn days x
Thanks all for the good wishes. I'm super anxious again and really emotionally on edge about them getting everything this time. I'm so happy for everyone who's had good results but also very jealous. Cancer just really messes with your head doesn't it? I constantly feel like I'm the worse person in the world!
I'll try to message late Fri or Sat when I'm out. In the meantime wishing everyone pain free days and lots of rest xxx
We're all in your corner for tomorrow Quaggie - wish you all the best, safe travels, speedy recovery, and we'll see you when you get back! Hugs x
Thanks for the advice on tablet swallowing, I might try what you suggest although I would probably just end up eating the smarties! In answer to your question, Foob does mean false boob. When I first joined the forum I noticed that a few people seemed to use this term so I started to use it too.
That is fab news Susieone - great results. You must be so relieved to know that it’s all gone and what the next few months look like in terms of future treatment. Can I ask if you’d had chemo first to shrink the tumour or if the surgery was the first step for you? Tell me to bog off if that’s too nosey 😉
Linda and Christine - hope your tightness eases soon and you can feel able to walk around a bit more easily. But small steps. Don’t rush it, you will get there. Well done for managing on the lower level drugs too - I know codeine and the like can cause other side effects so it’s good that you can manage. Linda - I used to share the same problem about tablet swallowing but have tutored myself over the years as I’ve been on long term medication now for ages. I have to break bigger pills in half and struggle with capsules but can manage smaller things now. My brother taught his kids to do it with smarties - maybe you should give that a try and the chocolate won’t hurt! 😉
Christine Rim - good news on that lack of of hiding tumours too. Re: the team bit, I haven’t seen anyone apart from my surgeon and the BCN so far. I think I’ll be handed over to an oncologist once the surgery element is done but I think even if you haven’t seen other people you will be discussed at MDT meetings by everyone. And your BCN should be the central point of contact as they should be with you at every step. But I think maybe different NHS regions work differently.
I found out that my BCN couldn’t see most of the documents on file for me as she’s based at one hospital and my surgeon has his letters sent from another one (where I had my surgery). It’s stupid that the nurse dealing with me can’t see any of my paperwork! And frustrating as it meant I spent a lot of Tues trying to chase down different secretaries to get an answer to a simple query.
BTW I keep seeing people writing ‘foob’ - what does this mean? Is it ‘fake boob’? Just curious.
Sending everyone hugs and strength. My next surgery is creeping closer on Friday and I’m getting nervous again - I just want clear margins!
Christine - it sounds like your tummy feels the same as my back (I had LD flap recon). I can't walk very well because when I stand up my back is really tight and I feel as if I can't stand up straight. I can't imagine being able to go for a walk for a long time but I suppose I am only 9 days post op. I'm also managing on paracetamol and ibuprofen but that's mainly because I am a big baby when it comes to swallowing tablets and they are the only thing I can get in non tablet form!
Hope everyone else is doing ok.
Haven't been online for a few days as my daughter was around over the weekend and so much to catch up on. like everyone else i had a down day over the weekend as movement and pain got to me. I think i expected to be able to reduce the pain relief quite quickly but i saw the consutant today and he was impressed that i was only taking paracetemol and iburpofen and nothing stronger. He said it was all healing well and everything was as good as it could be. i went for a walk yesterday and the tummy was stretched more than i have done since the DIEP so by night time it was very sore but recovered well by this morning. I now need to redress my scars/wounds every other day which sounds scary to me but hopefully wont be. At least on the second day i get to shower with the dressings off before applying new ones which sounds like it should be nice. Still need the infernenel tight pants and sports bra 24/7 and this will continue for another 4 weeks.
I am 14 days post op and although i moan about pain and movement, it is amazing how far i have improved in those two weeks. Every day it is easier than the last even if the increase is onky small i am adding them up. My tummy feels very tight and stretched so when i stand up it takes a few seconds for it to relax and let me walk upright.
I am not sure that i posted that at the end of last week my breast surgeon rang to let me know the breast tissue in the mastectomy breast was completely clear. Lumpectomy done before chemo so it was great news that no more cancer was present. Back in 2001 when i had the previous mastectomy they found another tumour so i was fully expecting more this time. Anyway breast tissue all gone and chemo complete so just the hormone therpahy and herceptin to go now with regard to the cancer. More surgery will be due to balance things up but a lot less major than the one i just had.
I am not aware of a team dealing with me as each person seems to act seperately and i act as a go between. The oncologist and breast surgeon talk to each other and the plastic surgeon knows the breast surgeon but not sure there is a team. Does everyone else have a team?
All the best to you all. Sending hugs to those who need emotional support and good wishes to those waiting for results.
It's good to hear from you Jane - your experience when you had your darain taken out sounds awful but I'm glad you're ok now. I also felt really achy when I had my first hair wash on Sunday (my daughter did it for me leaning over the bath). She also dried it and straightened it for me which was nice although she wasn't too impressed when I said she would probably have to do it for the next 4 weeks! I'm glad you described how your front, side and back felt because it sounds the same as mine and I had been wondering if that is normal. When people ask me what the pain is like I can only describe it as a really tight feeling like there is somebody inside me stretching all my muscles. Good luck with your dressing removals!
Big hugs to everyone x
Great - thanks Anna, I'll definitely take a look. Hope it wasn't a breach of community rules to post it in this thread?
Thank you for posting and sharing your blog. We have a new area for people who are blogging about their breast cancer, Writing about breast cancer. Please take a look. We are hoping that people will use this space to find inspiration whilst going through their own journeys and also for bloggers to share tips and how to write.
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Hope everyone managed to have a good bank holiday weekend. Shame the weather wasn’t quite the blue sky bliss we’d had before.
Not sure I’ll be able to catch up with everyone’s comments but:
Wombat woo - great news on your results. That must be such a relief. I think one of the hardest things in all this is not being able to know exactly what’s ahead so when you’re given a definite plan it must be a relief.
Jane304 - sorry to hear about the drain explosion. Sounds horrendous, but it also seems quite common. Who knew the body could behave in these sorts of ways? I wonder if anyone’s ever made a horror film about all the things your body does to you while undergoing treatment! And Jane I hope your energy levels balance out soon. It’s exhausting physically and emotionally so allow yourself time to recover at your own pace.
Delly - welcome and sorry to hear things have been so tough for you with both the BC and losing your mum. I can’t imagine how tough that is to go through. My family leave a distance away so my mum is supporting me via phone but I can hear how upset she gets if I phone her in distress so I try not to do it. Sucks big time doesn’t it?
Susieone - welcome too. I had the same op as you back on 3 Aug. So Sorry to hear you’ve had an infection, hope the antibiotics are kicking it in the ass! Totally allowed to be depressed and weepy. Your emotions go on a roller coaster ride through this and allowing yourself to vent is key. No point trying to be brave.
I’m starting to get anxious about my re-excision op on Friday - I know what the process will be but am anxious that all the things I avoided last time round (infections, seromas, haematomas etc) might catch me out this time. Fingers crossed, positive thinking etc etc!!
Had a bit of a worry-fest over the weekend as well as I had a new letter from my consultant which had some mysterious new letters on it (cMo). I stupidly googled and on a couple of websites it suggested this meant that cancer cells had been found in blood at a distance from the original tumour. So I freaked out but had no-one to ask (why is it all cancer helplines shut down at weekends and bank holidays). I have since started to think it might actually be a typo and mean no metastasis has been found but I’m waiting for my BCN to phone me back so I can double check. I find the communication from docs so frustrating as they put this all in letters and don’t explain what it means!
And finally, I’ve decided to start a blog to document my journey (and to try and make sense of it all). I posted my first entry at the weekend. If you’re interested in reading it is here:
Would be interested to hear what other women in the same boat think of it and also interested to know what you’d have liked to have read when you were starting out with BC.
Anyway, hugs to all - I’m off for a walk along a canal and to play a room escape with friends (my addiction!).
Hi Elliesmum (and all on this thread)
I had my second drain removed after 2.5 weeks when it was still producing 90ml a day... which may be why my foob now feels so tight 10 days later! As I understand it, the timing of drain removal is a trade off between ideally less than 30ml/day and length of time in you increasing the likelihood of infection.
Delly, you are one brave lady to be coming back for recon - I am sending you lots of very positive thoughts and hope it all goes smoothly for you!
Hope everyone else is recovering well - and enjoying books, films etc. I recommend Eleanor Oliphant Is Completely Fine and Amy And Isabelle if you’re into novels...Got to go to bed now - am knackered from a morning’s gardening...