Hi all, going home today, after having a good chat with the dr this morning. She said after my shower the dressings could be changed, as fluid on bandages was probably causing the irritation. However, when nurse came in she said they were just going to tape over the top. No point doing that,  so have asked them to check with the dr. I was able to have a lovely shower on my own and even managed to wash my hair. The dr also said she would prescribe the anti histamine I've been having trouble getting. She doesn't see a problem as lots of people take them all the time. Feel happy and confident to be going home. Have to come in for a wound check on Tuesday. Hope you've all had a lovely weekend. Xx

Oh my goodness so much to catch up on 

I’ve been quite unwell with a flu like thing and bizzarly I’m not getting any notifications again 

so firstly so pleased to hear your surgery has gone well Pippin and you are now home.  I hadn’t realized it was just one side so pleased your recovery seems to be progressing much quicker than I did.  I wasn’t allowed to do exercises at all - still not 3 months on. I’m guessing it is all down to type of surgery and type of reconstruction.   I also couldn’t shower !! Which I hated.  
keeping everything crossed you continue to make progress every day.  
so does this mean further surgeries for you now ? That said I’m sure you feel so relieved to have had the cancer removed finally 

carol / Greeny.  How are you both doing.  Good to hear the port was removed Greeny 

what lies ahead for you now - I have zoledronic every 6 months for 3 years like you - next one 5 th November 

im trying hard to find my new normal in life.  It’s a long way off the old me.  I’m experiencing chronic bone pain and neuropathy. My left side ( non cancer side ) is far worse. I have numbness in arm - pain in shoulder and hip and ankles 

I struggle to walk at all and I just find movement excruciating.  I’m still waiting to see oncologist as breast team said likely impact of medications.  But I want a bone scan to be sure.  
I did make. Clay boob pot with much help for coppafeel breast cancer.  I made a karate suit and belt with boobs as we are all warriors.  

anyhows I’ll check here more regular - no idea what’s up with notifications anymore - the little flag doesn’t say there are posts either for some reason 

xx take care everyone and keep smashing it pippin xx 

Hi NGS,

As we saw your post and comment about the notifications, I just wanted to send a quick reply to send over the help guide for managing your notifications.

If you continue to experience issues, do get in touch with with one of the moderators on cancerchat@cancer.org.uk.

Best wishes,

Ben
Cancer Chat Moderator

Hi NGS, so sorry to hear you have been so unwell, hope you have now started to feel better. I also seem to have issues with notifications at times. Although comng home from hospital is great, I have felt a little anxious. My wound was oozing a bit overnight and there was no one to ask about it. I do have a wound check at the hospital tomorrow, which I'm happy about. I had initially thought they were going to reduce healthy breast at the same time. As the surgery was already 8 hours, they decided to do it as a second phase. New boob looks really good and think I'll be really pleased when they both look the same. Because of my surgery delay the breast surgeon was different, but plastic surgeon was the same. I had been told I would only have partial lymph node removal, but they ended up doing full clearances. Haven't had any feedback as to why they decided on this and am a bit worried about it. It sounds like you're going through lots of different areas of pain, which must be difficult for you. I really hope if they sort out your meds  this will improve for you. I think we all worry about aches and pains and have that worry niggling in the back of our minds. It really is a horrible feeling and so hard to constantly try to remain positive. Keep in touch and let me know how you are doing. Xx

Hi NGS, just a quick question about the exercises. No-one actually told me to do them, but I followed a leaflet that I had been given previously. I did feel fine doing them but wonder if I should have been. I had a little oozing from the wound and wonder if this is the reason.Did you get any wound issues during your recovery? I'm going in for wound check tomorrow, which I'm pleased about. Xx

I was told to do exercises when I had lumpectomy surgery but with mastectomy and reconstruction surgeon was very clear I should not and could not raise arms above my head either. 
my surgery was different to yours though.  I had enhancers which required a mesh sling like thing stitched to my skin Barth sides to hold enhancer in place - I was restricted in movement to Engle this to mesh to my body 

the surgeon told me 3 months and he was right.  It’s really only this week I feel more settled. I would never have been able to wash my hair and was told not to get wet for at least 3 weeks.  I also had picu dressings which applied pressure to scars for 2 weeks along with 4 drains 

did they preserve your nipple - all tissue was taken right to margin of skin in my case so I had to wear compression bra to prevent necrosis.  I still have to wear  a soft sports type bra at night. 
im guessing the type of surgery dictates the recovery programme.  I’d already had two surgeries and was experiencing dead skin in this area so it complicated things one side. 
but yes once dressings were removed I had some oozing on one side.  Was given iodine strips and covering which was only eventually removed last week - 10 weeks post surgery 

I’m still told to avoid trauma to chest and not to overstretch - I can certainly feel if I do too much.  But I’m different to you in that I have foreign bodies in me and still have the metal ports too along my rib cage.  

like you though I’m actually really happy with how they look - they are very hard being false  and certainly don’t move.  I’ve nicknamed them my foobs.  

yours will likely be more natural and hopefully recover much quicker.  How is the abdominal side of things.  Did you get the tummy tuck. 

it will be good to get a wound review tomorrow as will offer reassurance I’d say don’t hesitate to call if you are worried bout anything - they told me much better to sort things quickly rather than leave it and it become more complicated 

xx speedy recovery xx 

Thanks NGS  this information has been really useful. I did get the tummy tuck, so getting in and out of bed is a bit of a challenge. They've only done the boob where I've had the mastectomy, the other side will be done in another surgery. It was decided that the surgery already being 8 hours, was long enough. I did lose the nipple, but breast looks pretty good, I can also have a nipple tattoo later on, which I will do. I'm going to give the bra a try tomorrow and see how it goes. Hopefully, won't be too painful. Love that you call yours foobs and great that you are so pleased with them. Makes it all worth it at least. Will let you know how it goes. xx

Hi Pippin,

I wouldn't worry too much about the leakage. This is fairly common after a mastectomy. I had quite a lot of leakage in both breasts after my op and had to have the fluid aspirated a few times, before they settled. Still, it is just as well that you are going for your wound review tomorrow, just to ensure that all is ok. There are other hypoallergenic tapes, which are waterproof and adhere much better than Micropore. Not all hospitals carry them, but don't hesitate to ask.

I am sorry to hear that you didn't get any advice about exercising, or about your bra, before you were discharged, but make sure to ask about these when you are at the hospital.

I'm not too bad thanks - still having tests for the collapses, but no further forward yet.

Jolamine xx

Sorry to hear that you still have no answers regarding the collapses, it must be so frustrating. Hopefully one of the upcoming tests will shed some light on it for you. I hope you don't have too long to wait for the further tests  xx

Sorry to hear that you still have no answers regarding the collapses, it must be so frustrating. Hopefully one of the upcoming tests will shed some light on it for you. I hope you don't have too long to wait for the further tests  xx

Hi Pippin 

how did you get on today - hopefully you got some answers to your questions and assurance that wound is ok 

@jolamine - really sorry to hear you still do not have answers regarding your collapses.  It must be a worry for you xx 

Hi NGS, they took all dressings off to have a look. I had a couple of blistered areas under breast, caused by the plaster. Also small area on tummy was still a bit wet looking. Had to have  these small areas redressed with different dressings and left the rest uncovered. They have also put me on a course of anti biotics, just as a precaution. Have to go back next week to have it checked again, also to have some stitches out. Feel much more comfortable today and they have said I can continue with the exercises, which I'm pleased about. Xx

Hi Pippin,

I'm glad to hear that you feel a lot more comfortable now. It's also good to hear that you can continue with your exercises. Did you ask about bras?

I sincerely hope that one of these tests pinpoints the cause. I am currently awaiting a referral for a tilt test and hope that this will be coming through quite soon.

Jolamine xx

Hi NGS,

It is worrying. At the moment, I'm hopeful that the tilt test might show something up. It sounds as if you are happy with your "Foobs" - love the name! I'm glad to hear that you have finally got all of your dressings off and hope that you are recovering well.

Jolamine xx

Hi Jolamine, I must apologise for my last reply to you. I was just reading a few of the recent posts and noticed how many errors are in it. I blame it on the meds lol! I had a really good night last night and feel so much more comfortable. Hubby, bless him came up with a great idea to make it easier for me to get up out of the chair, or in and out of bed. He set up a builders acrow pole from floor to ceiling in lounge and bedroom. I use this for support when getting up and down. It has made things so much easier and more comfortable for me. He's a genius! I did talk about bras and they're happy with the m&s post surgery bra I wore to the appointment. I am going to m&so today to pick up another one and return a couple I don't need. They said that I don't need to wear them at night, which I'm pleased about. I hope you don't have too long to wait for your tilt test and that it gives you the answers that you need. How have things been with your symptoms at the moment?

Hi Pippin,

Don't worry about any errors in your posts - I could still make sense of them. I am so gad to hear that you had a comfortable night in your own bed. You are lucky in that you don't need to wear a bra at night. I wore the M&S bras quite a lot after surgery and found them quite comfy. You can also get pockets put into some of your old bras, if you don't want to throw them all out.

Occupational Therapy could help you with the problem of getting in and out of bed. They gave me a bed rail, which fits under the mattress and has a hooped handle to help me. The builder's acrow pole sounds like a good substitute though.

My symptoms have been better since we moved house in May. I've had a few warnings, but have managed to sit down before I collapsed and thus, ward them off. I am however hoping that the tilt test comes through soon and that it gives me some answers.

Jolamine xx

Hi Jolamine, seems like the new waterproof dressings are irritating my skin too, so moving forward will only use when in the shower. I've bought some mepore dressings for the rest of the time and they feel more comfortable. The acrow poles are working really well and getting up and down is no longer difficult. I also feel a bit swollen when my arm is by my side, but assume this is normal. Good to hear that you can manage your symptoms, by taking notice of the warning signs. It would still be good to get your tilt test done soon and finally get some answers. Hope you have a lovely weekend. I had an amazing day with lots of visitors, ncluding the grandchildren. Xxx 

Hi Pippin,

I'm sorry to hear that you are also having problems with the new hypoallergenic dressings. There are several different ones on the market, so make sure to note the makes of the ones that disagree with you and avoid those. I'm glad to hear that you are finding the Mepore dressings more comfortable.

I had the same feeling when my arms were by my side. You have had some major work done internally, so you can't expect to get back to normal immediately. However, if the swelling gets worse make sure to let your breast care nurse know. I had to have my breasts aspirated a few times, before they settled.

I am glad to hear that you've had such an amazing day. What ages are your grandchildren? I expect that, after such a busy day, you're exhausted and having a well earned rest tonight.

I don't always get the warning signs in time to find a seat to prevent them and have lost confidence in going out, as a result. I am desperate to get some answers, so the tilt test cannot come soon enough.

Jolamine xx

Hi Jolamine, it's reassuring to hear that I'm not alone with having that swollen feeling, when my arms are by my side. I will mention this when I'm  at the hospital on Tuesday  I have been doing  bits and pieces around the house, so maybe need to rest a bit more, perhaps I'm doing too much, too soon.it was such a busy day yesterday, both my daughter's were here and the two grandchildren, Maise 7 and Thomas, who is 5 in a few days. Also my brother, sister-in-law, their daughter Lauren and granddaughter Mila , who is two. It was tiring, but I did sleep on the sofa for about three hours in the evening. My daughter did also change the beds for me, which was a big help. I totally understand how your confidence would be affected, especially as you don't always get the warning signs. My mum, bless her, has had a couple of bad falls recently and ended up in a & e. It has really knocked her confidence quite a lot. She popped to the shops for the first time this week in about 3 or 4 weeks. Keep pestering them about the tilt test and explain how it is affecting you, they may try to bring it forward for you. Take care. Xxx

Hi Pippin,

I don't think that this feeling is all that uncommon. It sounds as if you may have been doing too much though, what with all of your visitors. Your grandchildren are at a lovely age - enjoy them while you can, as they grow up so quickly! I am sure that you really appreciated your daughter changing the beds - I am still delighted to have someone to do this for me every week.

I am so sorry to hear about your Mum's falls, but glad to hear that she managed to venture out for the first time this week. It really does put a huge dent in your self-confidence, when something like this happens. We downsized in May and are in much smaller accommodation now. As a result of this, furniture is closer to hand at all times, which is possibly how I've managed to sit down before I collapse. However, my collapses were happening up to 4 times a day, when I was living in Scotland.

I still get the warning signs quite frequently, but the hospital don't seem too worried, now that I'm not collapsing so frequently. Various suggestions have been put forward. The main ones are that my BP seems to rise when I stand up, or that my medication needs to be reviewed. I take about 38 tablets per day and it has taken me some time to get my current prescription sorted. As you can imagine, I am not too keen to start going through that falderal all over again! The one thing I do want to know is what is causing these "funny turns", instead of having doctors just guessing.

Jolamine xx