surgery tomorrow and they've moved the goalposts today - I'm in bits

[nanniereeree]

hi everyone, I think we are all including me I hold my hands up expecting to be back to normal too quickly..
I am 6weeks post op right Mx and still very swollen under my arm BC Nurse says its normal stop trying to hurry things up .
I did not realise what a big job it is I was told I couldn't have reconstruction incase I needed rads I'm a dd cup so fairly big but with a proper bra and proper prosthesis I hope to look o.k
Marie

[Guest user]

You might find a v shape pillow Wll give you the ability to sleep on your side and Also a sports bra for comfort
lizzy

[Guest user]

Hamley
I still have some fluid retention even after having a drain in for 5 days, I have been back to the clinic in Tuesday and they say the fluid is ok as it is squishy and moves around. Not sure if it goes away on it own, but i am back in for the rest of my lymph nodes out next Tuesday, so I will have another drain fitted, so my fluid my go again with this. With regard to finding sleeping hard, I am also a side sleeper and found that placing a pillow in front of me so I can rest my arm on it and not put pressure on the sore underarm part helped me be able to side sleep again.

[hamley]

Hi Beeny, I wasn't given a bra, just a softie that was brought into my room when I was asleep. The softie is completely wrong for me and I've found that a rolled up thermal sock with non slippery surface that I was given for Christmas actually gives me a better shape than the softie!!! I've worn baggy jumpers over the top and a scarf when I go out which isn't often yet. I'll need to get something more suitable sorted out soon though.
I haven't been able to sleep any way other than flat on my back at the moment which is becoming uncomfortable. I can't wait to sleep on my side again.
Is the swelling the fluid? It's about the size of a tennis ball and feels like it might be fluid because it wobbles and swings around a bit! I've got bruising down my side that goes as far as my waist, it's gone yellow at the moment, not very becoming! Does the fluid just disappear? I might phone the BCN, I wish they had told me about this and the sutures before the surgery.
I saw a message somewhere on this forum where a lady had put a tissue between her scar and her softie, she found it made a very big difference, but I suppose we're still on very early days at the moment.
Lucylou, I'm glad I didn't have drains having read your experience. I think I'd rather have the swelling.

[Guest user]

hope you are ok, and I can tell you from experience thevdrainsvare a pain. I had to have mine in for 5 Days and thinking ways to find it whilst collecting my sons from school and sleeping was a pain in the butt. X

[Beeny]

Hi Hamley, I shared your fear of drains, too! I tried the bra they gave me at the hospital with the softee today and as I've no dressing and my skin is so inflamed and sensitive it was pretty unbearable, so won't be doing that for a while!
The glue is waterproof and yes, you can shower on the first day. It is most painful under my arm, like you, and the swelling is more painful there as there is a lot of fluid build up. Do you have much fluid?

[hamley]

Well done, Beeny, I'm glad that the trauma of it all wasn't so bad after all. I've had my surgery now too and although I did have some reservations about being 'uniboobed' it hasn't been as bad as I initially thought. I had no drains either, I'm glad they are going out of fashion because the thought of coming home with them in seemed more horrible that the op itself somehow.
I've got dressings on mine; a presure dressing was put on first so I had to get it changed by the nurse at my GP on Friday. I'm glad I decided not to change the dressing it myself as suggested by the ward nurse because I would definaltely have picked off the little bits of tape that turned out to be the equivilent of stiches!!! I had disolving stiches for both of my WLEs so didn't realise it would be different this time. I think I would rather have had the glue though. Can you shower straight away with glue? I feel really stinky at the moment even though I've tried to wash.
I'm wearing a bra; it's the BHS version of a Belvia bra so I get the support on one side and there's no pressure on the other side. I've got a lot of swelling and numbness under my arm which is where it hurts most, are you feeling it there?

[Beeny]

Thank you so much for all the advice and kind words. The op on Tuesday afternoon went well enough; apparently the first thing I did in the recovery room was look down my front and start screaming "It's gone! It's gone!". Nextstep, you are so right about being grateful to have the use of one arm, it has been a godsend and the surgeons were right not to let me have a bilateral mastectomy. I haven't worn a bra yet - I had no dressings on my wound at all, and the surface layer is glued together with no sutures or staples. I also had no drains (apparently they're going out of fashion!) so have probably got off quite easily. There has been some fluid build up, which at one stage was so uncomfortable they were on the brink of taking me back into surgery, but decided to give me nerve-blocking injections across my chest and monitor me for the morning after the op. When the swelling didn't increase, they decided to let me go home with pain relief.
It's been very up and down since I came out on Wednesday, and I've had good days and bad days, as I'd expected. The wound, whilst spectacular, doesn't upset me at all, nor does the fact that I don't have a breast on the left side. Female Amazon warriors would have their left breasts cut off so that they could wear their arrow holders (can't remember what they're called!), and so I consider it to be my Amazon Warrior Wound. It will be nice when I can wear a bra to support the other side, though!
I'm having my wound checked on Monday, and get my results on Friday of this week, so not too much waiting to go now.

[Nextstep]

Beeny,
I hope everything went well for you in the op. I have been looking for something positive for you to cling to. If it helps, after my right mastectomy I thought how fortunate I was that it wasn't bilateral as I wa able to use my left arm to do a lot of things that I couldn't temporarily do with my right arm. I am not sure if that is of any comfort to you but don't feel bad about this knocking you down. Try to take strength from anger (I'd be angry at being messed about) - it's a very strong emotion but perhaps you could channel that strength for your benefit, to make you determined to beat the cancer and the system and everything else!

[Morwenna]

I feel for you Beeny!

I had a mastectomy back in December, and only had one day's notice of the event, as I accepted a cancellation on being told I did not have clear margins from my WLE. It's not easy coping with being lopsided, especially at first, when you are sore, and you really don't want to wear any sort of bra for the mastectomy side, while the other poor boob is flying free!

Now I can usually tolerate a sports bra, although some are more comfortable than others, and I have some chest swelling that still goes up and down a bit, so I am seeing the lymphedema clinic for advice prior to getting a fitting appointment for my prosthetic.

I am hoping that once I have been supplied with a properly fitted bra and prostheses I will feel more comfortable.

I still have rads to go, and then we shall see what options I have for reconstruction, but if its not on I am seriously considering the second mastectomy. I'm trying not to dwell on it too much for now ... One thing at a time eh!!

[hamley]

Hi Beeny, I'm in a similar situation to you in that I've been advised to have two mx surgeries, one delayed to reduce the possibility of recovery issues before rads. I've had 2 WLEs with no clear margin, then chemo because they didn't want to delay further and to have the mx later. I told my BS I wanted a double mx (double due to family history) and immediate recon. He recommended that I had one mx before rads (to be done day after tomorrow) because he wanted me to be safe and deal with the BC as a matter of priority then to look at what else I want to do. You may change your mind in the time it takes, don't make any panic decisions you may regret. After rads I'll have the second mx and recon sometime after. I suggest speaking to your BS and asking for councelling if you want to have the 2nd mx, they need to know that you're prepared for it and are not making a spur of the moment decision. I had long conversations with my BS and BCN because I was worried that after the necessary treatment they would forget me, but I've been reassured that this isn't the case.
I understand what you're saying about being lop sided; I have an H cup and share your worries. However, I need to be safe first and foremost. The surgery for one mx takes much less time and the recovery period is shorter.
I've spoken to another BC lady who is currently waiting for a recon in June who has a G cup and she's coped well and looks good with the prosthesis, in fact she looks great.
I wish you all the best for tomorrow, let us know how you get on.

[Beeny]

I had such a good weekend thinking it was all sorted and knowing what was going to happen. Sigh. I'm just going to have to suck it up and get on with it. I'm sure there are a few ladies out there biting their tongues at what must seem like utter vanity in the face of a potentially life-threatening illness. I think I've been the whole of my focus on the surgery itself rather than the cancer, because I can't yet deal with the idea that I have cancer anyway. It still doesn't seem real at all - I haven't connected with it yet. So an operation to remove a breast just feels like I'm doing it for no reason really. I think I'm really tired and cried out and should just go to bed. I have to be up at 5 for a damned good hairwashing!! Thank you for the support, as always, I promise to be more positive in my next post. xx

[Mungos_mum]

Beeny, I am so sorry. The one thing that seems to keep us going is knowing what treatment we are having, and to have such a major change so close to treatment must be devastating. I was diagnosed in January and within 3 weeks had an Mx; I did request a bilateral Mx, but whilst it was not a catagoric no, I understood it was because I would need some counselling before hand to fully understand the consequences. However, I was also told that I could have reconstruction at the same time, but symmetry would have to be acheived later. I am currently lopsided, using a prosthesis, but this does have it's own problems, and I might have to go back to the softie for a while as I have some axillary swelling, caused I think by the bra and heavy prosthesis. Your Mx tomorrow will not be the only surgery you will be allowed, and having a longer period to consider options may result in a better decision for you. The softie is OK under clothes, although I do tend to wear my high necked shirts at the moment....
Best of luck tomorrow, the aim for surgeon tomorrow is to remove all the tumour and give you the best chance of a long NEDDY life. Everything else can be dealt with later. Recovery from Mx is also quicker than Mx and reconstruction. Do PM me if you have more questions. I'll be thinking of you. xx

[Beeny]

Lola, apparently it's too much of a risk; there is the possibility that the wound would have problems healing and then that would delay chemo if I need it, and they can't justify doubling the risks. I understand that - but why tell me on Friday that that's what they would do? I seem to have separated surgery and cancer somehow, and can't quite knit them back together. At one point I told the consultant that if he wouldn't remove both breasts tomorrow then I wouldn't have surgery at all. And I know that sounds like utter madness - this has really messed with my head!

[Guest user]

I'm sorry I can't reallly help. But I was dx 5 years ago and was advised to have a WLE. In the end the lump was bigger than they thought, but I still had a WLE. The result was a very mangled boob, but to be honest, it doesn't bother me.I can still wear dresses that are low etc It's all down to how you feel.

[Lola65]

Oh Beeny, that is so unfair. Have they given you a reason? If it's a medical reason then I suppose there is little you can do at this stage, but if it's some other reason, is there a chance you can still have it done? Is it because the plastic surgeon is unavailable maybe? What have they told you as regards a reduction in the future?

[Lucy_BCC]

Dear Beeny

I am sorry to read that you are having such a difficult time, I am sure your fellow users will be along soon with support for you and if you have time in the morning you are welcome to call our helpliners to talk things through.

Helpline 0808 800 6000 weekdays 9-5 Saturdays 10-2

Take care

Lucy

[Beeny]

I've had a dreadful day; after being told on Friday I would have a mastectomy & reduction tomorrow, I went in today and was told they'd changed their minds about the reduction. I'm an F cup, and I asked to look at a prosthesis. I'm in bits. I said from the beginning I couldn't handle being flat on one side and so lop-sided, but they refuse to do a double mastectomy. I just don't want to go in at all now. It's been 5 weeks since my first diagnosis, and when I was told my other breast was clear I cried because I can't stand the thought of the lop-sidedness and such a huge and heavy prosthesis. I'm right back there but now it's happening tomorrow. They gave me a little pink drawstring bag with a softie in it the size of a small pillow. And it's going to be done as day surgery. I'm just sitting here crying.