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SURGERY AUGUST 2018

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Re: SURGERY AUGUST 2018

Oh Quaggie so sorry to hear you didn’t get a clear margin. That must be very upsetting, and frustrating to feel that you are back to square one. I guess the whole thing is a process of ups and downs and it not being in your lymph nodes is a real positive. I’ve already had chemo and you are lucky not to be going there. I will keep my fingers crossed for you that the next op gets the desired result x
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Re: SURGERY AUGUST 2018

Hi all

 

Hope everyone's ok - hope your energy is recovering Michelle and that your haemotoma or seroma has settled down or gone away Mavit.  

 

Wound-wise I'm ok.  Still got steristrips on around my nipple and the consultant didn't want to pull them off when I saw him at the clinic this morning.  He just said to shower them off.  I asked about the smelly pit and he said the underarm wound was fine so I should be ok to shave my armpit and use deodarant as the wound is far enough away from the pit.  Someone else suggested using baby wipes for during the day too so I've bought some of those.

 

Had a bit of a blow though today as my consultant said that although the surgery removed the invasive tumour, there was not a clear margin as there was still DCIS at the lower edge.  Which means that I have to return for further surgery to remove that on 31 Aug, and if that surgery doesn't remove everything then it will be back in for a masectomy.  

I had just thought that I had put the surgery part behind me so feel deflated and like I'm back at square one.  The new surgery will be four weeks after my initial one when I should have been feeling almost back to normal. 

 

But, and it's a big but, my lymph nodes were clear so that means no spread and I shouldn't need chemo.  Which is a relief.  

 

So trying desperately to focus on the postives.  

 

Wishing everyone well! 

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Re: SURGERY AUGUST 2018

Wow l this thread is such a great source of info! I’m begining to feel less nervous hearing how all off you post op are doing. It’s good to know that apart from a few niggles everyone is doing so well.

Thanks for the good advise on the exercises Feenix, I have been doing a few arm exercises with weights so yes I’ll give the post op ones ago to get familiar with them and how they feel whilst I have mobility. I hope you are feeling better each day.
Macit and Quaggie I hope you get your haematoma’s sorted and they don’t cause you any pain. Regarding the smelly/sticky underarm, hopefully this is temporary and will settle down for you both soon. I’m glad I now know this is normal and will not worry if it happens.
Thanks for the heads up on the shooting pains Belmont Rose, this aside you sound like you are doing well.

I have had a good week this week and felt a lot more like myself. My chemo officially ended on Friday, and I had my first herceptin injection. Up until now it has been given as an infusion with chemo. Yesterday and today I have felt so tired which is a bit disappointing after feeling so good all week.
Hopefully it won’t last and I’ll have my energy levels back soon.
I have just been downloading Sex in the City as I never watched any of them when they were on and Greys Anatomy which also seems very popular all in preparation for my time on the sofa. Although there are 13 series of Greys Anatomy, that’s a lot of tine on the sofa!!

Have a good weekend all, I hope the sun is shining where you are, it is pouring down here! X
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Re: SURGERY AUGUST 2018

Appletree/ Quaggie

 

I have experienced sweaty armpit following removal of my nodes and find that my underarm is constantly sticky, but its not as wet as you describe . I am having to wipe myself most time, however it does not smell. I am 9 days post op. 

 

I did find that when they removed my sentinel nodes last time, I caught an infection and it was smelly and wold suggest that your BCN checks this out for you.

 

I am a bit alarmed now as it seems that I may be developing either a seratoma or a haematoma just above my scar/ incision. It it small at the moment however I pray that this does not continue to swell up

 

I still recall from my last op where I had my SNB , removal where I actually did contract a haematoma and boy it was very painful ! This was 10 days following surgery - I just hope that the same does not happen again as it is not pleasant one bit

 

Big hugs x 

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Re: SURGERY AUGUST 2018

Apple tree - yeah, I'll just check on Monday and not fret yet. As for the armpit, my node wound seems clean and dry with nothing linking. Doing a bit of googling it seems like it's fairly common. I'm wondering if the node removal does something to the sweat glands? I'll just keep wiping myself down. Such fun 😉

K x
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Re: SURGERY AUGUST 2018

I've been told by my GP that it is common to have a hard patch of scar tissue in the breast in the area from which the tumour was removed. He advised that it might get even a little harder after radiotherapy. Don't worry about it but do ask them on Monday.

 

As for your 'smelly' armpit, do you have any sign of fluid there? If serum has accumulated and is leaking from the wound, it could cause an odour. I had problems of that sort after the dressing came off my node wound. Again, they should be able to advise you on Monday!

 

Don't let it spoil your weekend. Have a lovely rest.  

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Re: SURGERY AUGUST 2018

Belmont Rosie - I'm the same as you, I wore my button front pyjamas for the first few nights but am now back to my vests, although I can now get my arm above my head anyway (yay, small triumphs and all that!)

 

I've been wearing my front fastening bras during the day as it just means I can keep an eye on things and I've found them really useful for the wound check appts etc as it means you don't have to strip off completely, but rear fastening is easy to do for me now too so I wear my harder cup rear fastening bra at night to give me a little bit of extra protection.

 

Now my dressings are off the one thing I'm concerned about is that there might be a haemotoma at the top of my breast as it feels hard compared to the rest of my boob.  That was the bit where the tumour was removed so I'm wondering if the harder feeling is just normal.  Am trying not to worry.  I've got another wound check appt on Mon so will ask then.

 

The other thing is that no matter what I do, my armpit on the surgery side stinks of BO. I've been using a non-perfumed soap and water repeatedly but within a minute or two it smells again.  I'm having to wash everything I wear immediately and I feel like I'm dirty, when I'm really not.  Anyone else had/getting the same?  I hate it.  I normally like to smell nice with good deodarant and a nice perfume but I just can't use them at the moment.  It's horrible. 

 

Hope everyone's well whether you're pre or post surgery.  Sending strength! xxx

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Re: SURGERY AUGUST 2018

My surgeon / consultant must be early 40s although she looks younger than her age however she has performed thousands of BC procedures .
I was a bit relunctant at first as I didn’t know a lot about her experience however did my research and found out lots of interesting articles about her in the community .
My faith is restored .. hopefully this will continue
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Re: SURGERY AUGUST 2018

Sorry Quaggie!
I’m pretty sure they’re supervised and kept away from scalpels! 😂
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Re: SURGERY AUGUST 2018

Dear all, hope everyone is hanging in there and looking forward to something non-cancer-related this weekend! I am now 10 days post op and hurrah, have today had one drain and the strip across the wound removed (it looks ok, a neat scar but skin a bit wrinkly to allow for implant to be pumped up later).

 

Like you, the main soreness is on my upper arm, where it is both numb and then occasional shooting pains - apparently common when all the lymph glands are removed. Otherwise, I had found a hard lump digging into me just under the boob along the line of the bra strap - turns out it’s the ‘port’ for the implant. Does seem daft that there’s nowhere else the surgeon can find to put it than right under your bra strap, but there you go...

 

For those pre-op, I only bought one new bra and pyjamas. After 3 days I was able to wear an ordinary rear-fastening bra and my usual spaghetti strap nightie, stepping in and out rather than over my head - so don’t worry if you can’t find what you think you need. It may not be necessary after all (although I’d never want to come between you and some well-deserved shopping therapy)!

 

Back to reading books on the sofa - and working my way through Netflix. Look after yourself and feel well...

BRx

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Re: SURGERY AUGUST 2018

God, I'm glad you didn't post that before my surgery on Fri 3 August!
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Re: SURGERY AUGUST 2018

If the doctors look young and inexperienced because they are! Wednesday 1 August is when the new doctors fresh out of uni are let loose on the wards and more experienced medics move on. It’s known as Black Wednesday!
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Re: SURGERY AUGUST 2018

Hi Michelle

District nurse came to see me this morning and confirmed everything is ok healing nicely - no infections thank goodness . She did say my breast and underarm pit does look swollen but not too bad . She changed the dressed where the drain was and gave me other dressings in case I needed to change or in case it fell off . Not feeling too bad today , I’m still in pain where they took the drain out, I’m also feeling very dizzy, lightheaded and run down . I attempted going for a short walk yesterday and they hit me for six as shattered by time I got home .. I am now just over a week since ANC operation .
My follow up appointment at the breast clinic is next Thursday and remaining optimistic that they have good news .

Btw.. I am currently just over half way through my treatments , hopefully all the surgery I needed is now complete just the question remains now whether I need chemo or not . If not I will just need a 3 week course of radiotherapy to my breast and prescription for tamoxifen..
they will hopefully discuss this with me on Thursday
Today in the post I received a letter from my GP on the lines of as part of their commitment to providing additional care and support in connection with your diagnosis of cancer I would like to offer you the opportunity to discuss any concerns and answer any questions you may have / please make appointment ASAP

Has anybody else received this letter from their GP?

Michelle, / for all those with forthcoming dates / hope your surgery goes well - keep us all updated
For all those who have had their operations , wishing you all speedy recoveries xxx
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Re: SURGERY AUGUST 2018

Hi Michelle ... pleased you got through your pre op... all mine were with the same nurse then off to relevant dept’s for bloods etc. If they’ve given you information about what exercises you are to do post op try them before surgery. You’ll be on a count down ... the waiting is always the worst bit. Hope you’re doing ok otherwise. Jxx

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Re: SURGERY AUGUST 2018

Michelle - I'm having visions of blood splattered walls after your blood test scenario - what a mess!  When I was waiting for my surgery last week I was amazed by how young all the doctors looked.  Not sure if that's just a sign that I'm getting old though, but it can make you a bit anxious as to whether they have much experience!

 

One woman who was also there for surgery with my surgeon on my op day really didn't endear me to her when she insisted in declaring in a very loud voice that she'd told the surgeon that she'd only accept him doing the op as she knew that the registrar would be doing everyone else's. She told everyone 'I'm not going to be an experiment' thinking herself very funny.  Me and the other poor women in the waiting room could only look on and wish she'd shut up.  TBH once you're out cold she'd have no idea who was doing the surgery so I sort of hope it WAS the registrar!!  (Sorry, shouldn't be mean).

 

Anyway, I'm a lot perkier today.  Went to see the BCN at my hospital who took off my dressings and declared everything was fine.  I've still got steristrips around my nipple where the cut was made so can't see the wound there but the wound under my arm is large but pink and clear and not as scary as I thought.  She reassured me that I could wash it all with unperfumed soap and if the remaining steristrips fell off that was fine.

 

However she also said that my surgeon's blase 'shower the dressings anytime and let them fall off' straight after surgery was a rubbish thing to say.  She didn't seem very impressed with him at all!  

 

I feel like I finally got some clear advice so can relax a bit.  And today I did some exercises that meant I could put my arm above my head for the first time so I feel darned proud of myself 😉 

 

Anyway, hope everyone's well and either recovering nicely or feeling prepared for the op.  

 

Thinking of you all xxx 

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Re: SURGERY AUGUST 2018

Hello

I had my pre op on Wednesday and it went ok, not nearly as traumatic as yours Jane although there were a couple of irritations. First the young doctor taking my blood left the band on my arm so when she removed the needle blood spurted everywhere, not a pretty sight! Second she didn’t give the right info to the ECG team so I was left waiting for an hour and would have been longer if I hadn’t have asked. Also the doctor who described the op to me started to tell me where they were taking the lumps out which was completely the wrong place which didn’t fill me with confidence and he came across as a little patronising although he was young and I don’t think he meant to. I just hope he’s not in charge on the day! I wasn’t told about any antibacterial wash or cream to use, I don’t know if I should be worried?!
Today I made it to Dunelm at last and bought my v pillow an a couple of pillow cases, and you are right Jane it is huge! I still need a few button up tops as I don’t have any and then I think I’m ready.

Good to hear the leakage had stopped Mavit, I agree with Quaggie it is horrible not knowing what is normal. I’m having a lymph clearance and WLE next Thursday. Did they say your arm might feel dead? Let us know what the nurse says.

Quaggie how are they dressings now? Have you managed to get sorted?

It sounds like you really went through the mill Appletree and were lucky not to end up with a serious infection. On my pre op I was dealt with by inexperienced Doctors, I know everyone has to learn sometime but I wish they had a bit more supervision!

Hope everyone is doing well, love to all x

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Re: SURGERY AUGUST 2018

Quaggie, so sorry to hear of your continued problems in getting professional help. Good luck when you see the GP; I think that will be very wise as they can't ignore a problem! All GPs' practices must have access to a team of district nurses as so many patients will not be able to get out of their own homes for medical treatments such as dressings changes.

 

I think part of the problem is the demarcation between different medical units, as a consequence of trying to run the NHS like a commercial business.

 

This was my recent experience. After the district nurse took off my dressing (including the steri strips), I had such an outpouring of fluid that I don't think the strips would have stayed on anyway. Outpourings occurred periodically. It was very difficult to make an appointment to go to the wound clinic at the hospital, as I kept getting an answer phone which asked me to leave a message so they could get back to me the following day. Breast cancer patients are all given the ward number too, and asked to contact the ward outside the wound clinic times, which are 9.00am - 4.00pm.

 

On more than one occasion I ended up going down to the ward. Junior doctors on duty all looked nervous, even although the ward deals mainly with breast cancer patients from far and wide. On one occasion after the ward sister had applied steri strips and a small dressing, I got home 30 mins later to find the whole lot had dislodged itself on account of the fluid still leaking!

 

Eventually the wound started smelling a bit nasty, although still apparently healthy. At first I blamed the builders working on a house roof up the road, although noticing that the aroma followed me around except when I went outside.

 

In desperation I phoned the ward, the clinic being apparently asleep. A reluctant sister agreed to see me. On arrival, I was greeted by a nervous junior doctor who very cheerfully recognised me, and a trainee doctor who announced immediately that he would be fully qualified in a couple of days time. I just managed not to pat him on the head and tell him that was fine.

 

The junior doctor phoned the surgeon on duty who happened to be the chief breast consultant and who gave me an appointment to attend his clinic the following day (a Wednesday). At the clinic, he called in another consultant surgeon, who gave me a place on his surgical list for the Friday. By the Saturday I was out again, having had the wound revised under general anaesthetic, pumped full of antibiotics, and having enjoyed more hospital toast.

 

Dealing with it within three days was pretty good. The surgeons seemed to be concerned that I had been left with no proper appointments to have the original wound checked. This time, the surgeon referred me to the wound clinic himself, so they had to give me an appointment.

 

The junior surgeon who discharged me on the Saturday repeated several time, 'Your wound has now be completely stitched up.' Previously there had been a little gap at one end through which tissue was trying to grow and couldn't heal, and through which the seroma had been draining itself. 

 

Everything has been fine since then.

 

Subsequently, I've discovered that originally, the breast ward mentioned was intended to deal with seroma problems 24 hours, 7 days a week. All staff nurses were going to be trained in the procedures. Then Someone on High decreed that out patients should go to the wound clinic during clinic hours, and go to the ward only at evenings and week ends. Consequently, very few ward nurses have been trained to deal with seromas. The poor old patient is left being batted from one to the other like a ping pong ball.

 

And this hospital is a centre of excellence for cancer care!

 

The poor old crumbling NHS. I admire everyone who keeps working in her.

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Re: SURGERY AUGUST 2018

Morning Quaggie

Leaking seems to stopped patch has dried up - not sure what cause was . Nurse is coming out tomorrow to check me over and I’ll mention it to her.
My arm feels so stiff , dead . Trying to move it as much as I can still not much sensation underarm with all swelling etc ..
X
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Re: SURGERY AUGUST 2018

How are you doing this morning Mavit? Hope the leaking stopped - if not have you been to get it checked out? It's horrible not knowing whether something is 'normal' isn't it? Just adds to the anxiety.

Let us know how you are!

Love K x
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Re: SURGERY AUGUST 2018


Evening all

I had full nodes clearance last Thursday which I understand went well. I chose to stay in overnight so they could keep an eye on me and had a pleasant stay in Hospitsl . I felt very sore and tender however pleased that I was able to get out of bed and go for walks around the hospital .

I was discharged last Friday afternoon with a drain fitted underarm which felt very uncomfortable however manageable - it was just remembering that I needed to take it everywhere with me at all times . Sleeping was uncomfortable having to sleep on one side and wishing the day would come when I could have it removed.

I had my drain removed earlier this afternoon ( had drain in place for 5 days ) as fluid discharge was between 20-30 msl within 24 hours so was told it could come out .

5 hours have now passed and i noticed that where they removed the drain , they have covered the cut with a plaster . The plaster is now soaked through and I appear to have now developed a ‘leak’ which has gone through to underarm sleeve clothing .. is this something I should be worried about?

My underarm looks a bit swollen however the incision which has been neatly stitched seems intact however very sore and dry - it doesn’t help that I can wash my underarm properly as it tends to sting a lot where moisture ..

I am inclined to leave it for this evening and review it tomorrow . Just concerned of it leaking overnight and possibility it could turn into a seratona - fingers crossed It doesn’t come to that !

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Re: SURGERY AUGUST 2018

Jane - that does sound traumatic. Poor you but well done on taking a photo for future reference (I'd never have thought of that). Hope that helps for the 2nd blood test on Tues. I always think that the nurses in blood taking clinics should be the experts at finding the right spot. I had a doctor mess up putting a cannula in the back of my hand for another test and refused to believe me when I said it was really painful especially when he tried to inject into the cannula. Luckily a nurse came alone and pointed out that he'd missed the vein completely!!

re: body/hair wash I was told that I should use some antibacterial wash prior to surgery and a GP friend recommended Hibiscrub, then I was given a pack of 8 antibacterial wipes to use on the evening before and day of my surgery. Every NHS region seems to have it's own rules on these things. TBH I wonder if there's much point given that between washing with these things and the surgery you'll put on clothes, travel in a vehicle and wander round a hospital full of bugs!!

I found a couple of button front, tie front tops at Warehouse, a bit more expensive but nice enough to wear at other times.

Thanks for the offer of the virtual shoulder btw - I find being able to come on here and chat so comforting.

Strength to you all xx

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Re: SURGERY AUGUST 2018

Well today's pre-op assessment was traumatic. I like to be different!

 

Blood pressure and ECG all ok - well within standard ranges/average/normal. As for the blood test, well....

 

It took 4 attempts!

 

The first 3 attempts by 3 different nurses (trying 2 different veins inside arm elbow crease, and 1 vein in back of hand - considering right arm had to be used due to risk of lymphoedema in left arm) all failed. I was VERY distressed as am VERY needle phobic and tend to stop breathing during injections etc, but agreed to another attempt to get it over and done with.

 

The 4th attempt was by a doctor and was successful.

 

I have photographed my hand showing which vein was successful so the same one can be used for the 2nd blood test on Tuesday. Without the 2nd blood test, my surgeon will not perform my operation (mx/recon). Although I can't remember why I have to go for a 2nd test on Tuesday which is 2 days before the op.

 

The very nice doctor also told me I should definitely drink some vodka tonight - and even recommended a Hungarian vodka from his home country! I shall find a way to get a bottle of that!

 

Something else new: was given Octensian skin wash to use from Sunday thorugh Thursday - use on body each day plus also on hair alternate days. Also have a nasal ointment to apply 3 times a day for 5 days leading up to the op. I know all this is to do with ensuring no chance of infection/bateria etc but was surprised as had no idea such things were given to be used.

 

I did, however, manage to get my V-shaped pillow from Dunelm, and 2 v-shaped pillow cases (one is a dusky pink colour and the other blackcurrent colour), and 2 navy colour throws for my sofa. I didn't realise how BIG the pillow is - not sure what I was expecting but it's massive - size matters!

 

Hope all went well for you today Michelle and was less traumatic medically than mine. For button through tops, I can recommend Primark for pyjama tops and New Look for general wearing tops (got a couple that are button through and tie front), although New Look tops are not so cheap at £12.99 each but of course are not just for wearing after the op but anytime unless you might associate them with surgery.

 

Quaggie, sorry to hear of your troubles with dressings and hope you can get it all sorted. For sure talk with your GP and ask for advice/help. Please consider my shoulder a virtual one to cry onto, having the meltdown sobs now and again is quite normal and I've eventually had a few myself, at completely random times. Big hugs to you. 

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Re: SURGERY AUGUST 2018

Appletree - thanks for your message (and the one on the other thread).  I do feel like my hospital care is a bit confused.  My surgeon works out of two hospitals - one where I had the original diagnosis and one where I had the surgery.  They don't seem to share information at all and when I speak to one, they don't seem to have a clue what has happened elsewhere. 

 

I tried to see the practice nurse at my GP today to check the dressing but was told 'we don't do dressings' and told to go to the walk in centre instead.  Which is where the steristrips that didn't stay on were given to me!  

 

The consultant at the breast clinic told me that if the dressings hadn't fallen off by Fri then I should take them off, but leave the steristrips unless they fall off by themselves.  Like you, I'm really anxious about removing the dressings myself so might make an appointment to see my GP on Friday morning anyway.  I'm working on the theory that if I'm there anyway they can hardly refuse to help!!  But I don't think my practice offers any sort of district nurse support. 

 

It all got a bit overwhelming this afternoon and just suddenly started sobbing for no reason.  I guess there will be good days and bad days during recovery.    

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Re: SURGERY AUGUST 2018

Quaggie, do you have a sympathetic GP who could advise? My axillary node wound bandage came off after 5 days, along with the steri strips. Subsequently I had periodic outpourings of serum from the axillary wound and had to make a few visits back to the ward to have it sorted.

 

It sounds as though they aren't being very organised in your hospital. Any chance your GP might arrange for a district nurse to make a few home visits whilst you're recovering? If the woud has healed well you might not need any further dressings, but I do think you need to have it checked by someone with appropriate experience. An experienced staff nurse or ward sister might have more appropriate experience with dressings than a surgeon!

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Re: SURGERY AUGUST 2018

Jane/Michelle - hope your pre-op appointments went ok.  Glad to hear you're both stocked up on all the things you need for post-surgery - the pillows and button up tops (something I had almost zero off until this) are all good purchases.

 

Anyone who is post-surgery is it normal to have such high dressing anxiety as I am right now?  I've had so many confusing messages about what I should do with the dressings.  My surgeon was like 'it's fine if they all fall off, no worries' but the day ward nurse was more cautious about covering up while showering and not letting the steristrips get wet.  

I had a bit of a reaction to the dressing in my armpit so took it off and went to my walk in centre to get it checked as I didn't want to risk lymphoedema.  The nurse put new steristrips on but before I'd even got home they'd all fallen off and so now the wound is uncovered 5 days after surgery.  I'm not sure if this is ok or not?

 

Anyone got any experience/advice?

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Re: SURGERY AUGUST 2018

Jane hope the pre op goes well tomorrow. I have mine tomorrow too, we really are on the same schedule! You sound very organised for surgery, thanks for telling me what you have got I really need to get sorted this week. So far I have button up PJ’s and a drain dolly.
Sounds like you are doing well Belmont Rose, although lacking in sleep! Good luck with your results on Friday.
Quaggie thanks for sharing your experience. I am trying not to worry to much. It sounds like you are feeling ok which is great. Good luck for your results on Monday.
All the best to all xx
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Re: SURGERY AUGUST 2018

Hey Michelle21, I've done a bit of a spending spree over the last couple of months in prep for the mx/recon and recovery: mastectomy pillow, correct fitting bras (hadn't been properly measured for years until today) and post surgery bras (that I can put a softie in as the recon will not intially be the same size as my remaining boob), drain dollie (search on google although may not need it as will be in hosptial for 5 days and drains should be removed before discharge), front buttoning pyjama tops and casual tops, bio oil for the upcoming scars and can be used now on my SNB scar which is now just over 6 weeks old, a lap cushion to put my tablet on for ease of browsing/streaming etc or to place my Kindle on for reading. Sounds like a lot but with careful planning and research, most things were not so expensive.

I also didn't get to Dunelm today for the V shaped pillow but will go tomorrow after my pre-op assessment.

 

Quaggie, good to hear things are going well so far, crossing fingers that your nodes are indeed clear. Keep on taking it easy and look after yourself.

 

Belmont Rosie, and to you as well that things are going well for you so far, taking it easy and getting some sun but I think we all agree we need a break in the weather and a bit of cool weather for a change. 

 

Appletree, that's one thing I love about today's technoloyg and good wi-fi connection, is box sets. Even at home in "normal" life I've box set binged on many series and know there is still loads out there I can watch during my upcoming 3 month convalescence - although I must get out and do some walking too!

 

Disney Diane, hope your surgery went well, we'll all be waiting to hear your progress when you're good and ready and get back here.

 

All the best to you all.

 

 

 

 

 

 

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Re: SURGERY AUGUST 2018

Dear Quaggie

 

It's not surprising you're feeling a bit vulnerable, considering all you've been through recently, and the speed with which events happen. I know what you mean about NHS day surgery being pretty impersonal; they do have a tendency to try to shove patients out the same day if they can. It was my anaesthetist who insisted I should stay in overnight as otherwise I'd be on my own after a general anaesthetic. The surgeon was all for pitching me out!

 

Most people on here say it's a matter of taking each day as it comes, being kind to yourself, having some treats and finding plenty of distractions. I hope you find some good box sets. Does you local library have DVDs?

 

I rely quite a bit on BBC iPlayer for downloading anything interesting on the BBC, and if I can't sleep, sit up and watch during the night! The cats have got used to this, know they won't get any breakfast until 6.00am, so just sit quietly by my side until I return to bed. When 'The Bridge' was showing recently, I downloaded all the series going right back to the first - they were all still accessible. I ended up watching several episodes back to back over a couple of weeks. Having to concentrate on the sub titles and the convoluted plots and sub-plots certainly gave me mental exercise!

 

Keep going

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Re: SURGERY AUGUST 2018

Hi all, good to see everyone is in good spirits and keeping going ok.

 

I am now 8 days post left side Mx and full lymph node clearance and apart from feeling I am strapped into a giant corset, am feeling just about all right. My left side is still very swollen but I guess that’s to be expected and I do notice if I don’t take the paracetamol dead on schedule....

 

My new normal is rather fitful sleep, get up around 6 to ease backache from holding a sleeping position (despite nice pillows), and then a lot of reading and dozing during the day. The fact it’s been so hot at night hasn’t helped I suspect, but at least it’s meant being in the garden has been lovely! I’m also making myself go out for the odd short walk in the neighbourhood in order not to go stir crazy.

 

Seeing the surgeon again on Friday to hear the pathology results, and hopefully get rid of at least one of my two drains (bitof a conversation-killer, these bottles, aren’t they?!)

 

Hooe you are all managing to enjoy each day - each one is progress towards discovering our new selves!

Hugs to all, BR

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Re: SURGERY AUGUST 2018

Hi all

 

Thanks for all your good wishes.  I'm now 3 full days post op and feeling much better than I thought I would.  I'm using my arm as much as possible and apart from a few zingy zappy pains in my breast (which I think are the nerves reconnecting) there's not much pain there.  Paracetomol seems to be doing a good enough job to keep me comfortable.  

 

I had my wounds checked at the breast clinic yesterday and they seemed happy enough.  A bit of fluid build up but nothing they wanted to do anything about yet.  If the dressings haven't fallen off by Friday I have to take them off myself which makes me very nervous as I'm terrified of what's underneath or pulling something open. 

 

Michelle21 - I had 2 lymph nodes removed during my surgery.  They did the OSNA test on them while I was on the table and it came back negative but the surgeon said this isn't 100% accurate so I have to wait for full confirmation when I get results.  Apparently I get prelim results next Mon but I'm not sure what I might be told at that point - I've put in a call to my BCNs to see if they can clarify what I might get told then, as I'll most likely be on my own for that appt. 

 

My surgery experience was ok - individually all the staff are lovely (especially the radiologist team as I broke down in tears when they had to put my wire in via mammogram rather than just using the ultrasound as it just seemed all too much, but they gave me so much comfort).  I do find the NHS system of day surgery pretty impersonal - you're just another cog in the machine of the day and no one has time to really make you feel like you're more than just a passing client.  But the surgery was fine.  I was really anxious about the anaesthetic too but I remember zero about being given it.  One minute I was chatting, next min I was waking up in the recovery room.  Apparently I threw up while recovering but don't remember it all! Which is probably a good thing. 

 

DisneyDiane - hope your surgery goes well today.  The anticipation is way worse than the experience and hopefully you'll be home swiftly and able to recuperate comfortably in your own home.  Sending you loads of positive vibes and best wishes.  I'll be sitting at home alone for the next few days so feel free to message when you're up to it, if you need anyone to chat with about it all xx

 

Thanks to everyone on here for the good wishes - it's my first day alone post-surgery as the friend who had been with me had to go back to work, so I'm feeling a bit vulnerable but hopefully that'll pass when I've found a good box set to get me teeth into! 

 

K xx 

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Re: SURGERY AUGUST 2018

Hi Michelle,

I've had my surgery and I'm on the road to recovery and trying to find my new normal.
I tend to sleep on my rightside which was also my surgery side and for the first few nights after surgery I rested on a cushions but then I remembered a friend selling the benefits of the V when she had her treatment.
Luckily I found a decent one in Ikea when my friend dragged me there (hate the place normally!!!) 2 days after surgery.
I tend to wedge my shoulder in to the middle and then bolster myself front and back!! Hope you get the picture 🤣🤣🤣

Take care xx
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Re: SURGERY AUGUST 2018

I hope surgery goes well for you Disney Diane x

Oh that’s a coincidence Jane, we can recover together! I didn’t make it to Dunelm today, I will go tomorrow instead. Are there any other things you are getting in preparation for hospital? X
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Re: SURGERY AUGUST 2018

My surgery is on 16th August too, Michelle! Hope your daughter's results are good, still a few days to wait.

I'm also off to Dunelm one day this week to get a V shaped pillow in between other appointments, unless I get one in John Lewis when in town tomorrow.

 

Disney Diane - just realised your surgery is tomorrow so all the best for it and for a swift recovery.

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Re: SURGERY AUGUST 2018

Thanks Kip, I’ve noticed Dunelm sell V cusions so going to head out later to get one as shops are quite a novelty having spent chemo avoiding them!

Appletree thanks for the recommendation of Headspace, however I have had to wean myself off Buddihfy mediation’s as I was using them every night!! I am trying to get back used to closing my own head chatter down without the app. How long was your recovery, ie when could you drive?

Thanks for sharing your experience Jane, it’s the anaesthetic that I’m dreading too! My friend is an anaesthetist and has been trying to calm my irrational fears! You are right although chemo was horrible to go through it was worth it.

I have just been told my surgery is on 16th August. This is the only date I didn’t want it to be as my daughter will get her A Level results then. Talk about Sod’s law. Ive managed to get being admitted delayed from 7.30am to 9am so if she gets into her chosen uni at least I’ll know beforehand but if not I will be leaving my husband to sort it all out. I will just have to keep my fingers crossed tightly.

I hope those of you that have had surgery are recovering well. X
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Re: SURGERY AUGUST 2018

Thanks for the good wishes and hints and tips, particularly about the pillows (thanks Kip and Appletree), will be buying a V shaped pillow this week which hopefully will compliment my mastectomy pillow from Jen's Friends (check the out on Facebook) and a smaller heart shape softie pillow given to me by my first BCN. It's not a long journey from the hospital to my house but the roads around here are not smooth although my OH's car is super comfy!

 

Sending you positive and supportive thoughts Disney Diane, and hope you're recovering well Quaggie.

 

Michelle21: My first ever surgery was SNB in June, it was easier than I expected, I had more fear of the general anaesthetic but my anaesthetic was lovely and I had Emla cream applied to the back of my hand so that it would be numb before the canula was inserted. I recovered well although was very confused and forgetful for the first 2 hours aftewards but then eating, drinking and able to go to the loo quite quickly. Was home that same night and just rested up for the following week, taking it easy and doing the exercises. As long as I get the Emla cream for my op next week I'm sure I'll be fine.

And so you're going to have a WLE instread of mx then? That's good news that the chemo has caused tumour to shrink, even though I'm sure that was not easy to go through. 

 

Hope Belmont Rosie is doing ok.

 

Take care all.

 

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Re: SURGERY AUGUST 2018

Hello Michelle

 

I had surgery on 24 April; a WLE with axillary node clearance.

 

A cushion between me and the seat belt was very helpful in the car.

 

Generallly I sleep on my back anyway, with legs out in a straight line, as this is better for my osteoarthritis; lying in foetal position, although natural, leaves me with aches and pains in the morning. The Headspace relaxation exercises are helpful when going to sleep. (Google 'Headspace' and you will get to their site where they give free advice on meditation/mindfulness relaxation exercises.)

 

I like to have three pillows, in tiers, so my head and shoulders are raised slightly.

 

That arrangement has worked for me.

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Re: SURGERY AUGUST 2018

Hi as a lady who had Mx and snb removal I definitely recommend a V pillow, got mine on Amazon it takes a bit of getting used to sleeping in your back but after couple of weeks j stsrted to roll over and hit back to side sleeping.  I used to pop a pillow under my knees when flat on my back as I would get back ache otherwise.  Also hospital gave me small heart shaped pillow to pop under the surgery arm it stops rubbing and helps with lymphatic flow.  Was comfy in the car too.... Definitely have a pillow in the car for return home from hospital as seatbelt m as you hurt.  Kip

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Re: SURGERY AUGUST 2018

Hi Quaggie did you have any lymph nodes taken out? How was the experience of having an op? I’ve never had any surgery before either. Good luck with your results and I hope it gets easier to sleep soon.

Hi Disney Diane I think most of us here go betweeen feeling positive and then doom and gloom, as Appletree says waiting is the worst time. I was thrown straight into chemo within a week of dx which sent me into a mad shocked panic but over time it does get easier but I’m still up and down. I was dx in March. Good luck with your op on Tuesday, let us know how you get on.

Appletree and Lilacmoon when are you having surgery or have you had it already? If so would you recommend I get a V pillow? Where do you get them from?

I hope those of you who have had surgery are recovering well xx
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Re: SURGERY AUGUST 2018

And sending positive and supportive thoughts to you, Disney Diane.

 

It's a hard road for all of us, and a lonely one, even for those with caring partners and family members. Don't kick yourself for being lucky compared to others - breast cancer is not a walk in the park for anyone.

 

I think many people on this forum would say that the waiting between appointments/treatments/results is one of the worst aspects. Once we know what we are up against, it is easier to be pragmatic and get on with things. Also, most medical staff involved in care of cancer patients are especially kind and understanding; the system has improved greatly in recent years.

 

Try to take each day as it comes and not think too far ahead. I know that's easily said, but it helps if you can do that.

 

All the very best for Tuesday and please do let us know how you have got on.

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Re: SURGERY AUGUST 2018

Hello Everyone

First time posting here - it is such good support and a comfort to read other peoples stories. I have my surgery Tuesday - I have had doubts as to what is best and my journey to this point has been complicated by other health matters adding to my already high anxiety. My bag is packed and am going in tomorrow for my nuclear injection and staying overnight as my hospital is 2 hours away. I ebb and flow between positivity and negativity - all the while knowing how lucky I am compared to some people - they have hopes it has been caught early and despite hearing this and all the words of support from family and friends I do at times feel very alone and very low. I am worried about the recovery time and then like many of you the wait for further tests to establish the treatment plan going forward.

What a wonderful place this is to share ans get support from people who understand the un-logical and at sometimes crazy thoughts we all have on this path.

Sending happy and positive thoughts to you all xx

 

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Re: SURGERY AUGUST 2018

Quaggie, good luck with your ongoing recovery x Keep going with the V-pillow as you will find your comfortable position in the end.
How long do you need to wait for your results?
Hope everything comes back good and you know what the next stage of your treatment is going to be.

😊
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Re: SURGERY AUGUST 2018

Hi all

 

Just jumping on here as I'm 2 days post op after a wire guided WLE and round block therapeutic mammoplasty.  So nothing as extensive as a masectomy but as it was my first experience of any kind of surgery, so traumatic enough.

 

I'm trying to get back to 'normal' as soon as possible but finding it almost impossible to sleep.  I've always been a side sleeper and just lie awake if I have to go to bed on my back.  This is proving more exhausting than anything else as the night's feel very long when you're just awake and feeling tender and scared of moving/pulling/bumping yourself.  I'm using a V pillow but just so want roll onto my side!

 

Doing my exercises and trying to use my arm as much as possible, though I've developed a bad 't rex arm' habit where I keep my arm partly bent across my breast to protect it.  Have to keep reminding myself to move it normally! 

 

I'm just waiting for results from the op to see what's next for me, rads or chemo.  Trying to focus on recuperating though rather than fretting too much about that appointment.

 

Hope everyone is recovering well. xx 

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Re: SURGERY AUGUST 2018

Hi Belmont Rosie I was just wondering how you are feeling now almost a week after your op? Hope everything is going well , keep up the exercises. X
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Re: SURGERY AUGUST 2018

Hello everyone!
I had an interesting meeting with the surgeon yesterday. After thinking for the last 5 months that I will be having a mastectomy the surgeon has said he will just remove the tumours. He sent me to radiology for a mammogram and ultrasound and it showed tumours have shrunk down to nothing! I am reallly pleased although realise things can always change again. It appears the 6 rounds of chemo were worth it!

Minniem yes whilst I was in with the surgeon a nurse was present and she has said that she will see me when I come in for my pre op assessment. Did you ask about recon? I took a list of questions with me, if you don’t feel happy with the situation could you postpone th op until you have the information you require?

Hi Belmont Rose it sounds like you are doing great so soon after the op. I don’t think it is vain at all, or that age makes much difference. I feel the same although it now looks like I won’t need a recon, I think it is more about wanting to feel as much like ourselves as we were before this happened as is possible. But like you say it is a very personal decision.

Jane I think it’s perfectly normal to have doubts as it’s a big decision but it sounds like you have given thought to the pros and cons.

Thanks for your experience Kip, it useful to know recovery times and options other than recon. I went in with a long list of questions about recon but as it turned out even if I had still needed it my unit only do delayed recon if you’ve had chemo and are having rads and they do it at a completely different hospital which I was surprised about.

Good to meet you ladies and good luck to us all, we can get through this xx
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Re: SURGERY AUGUST 2018

Hi Jane, good to meet you! I ended up having a silicone/saline mix implant on the advice of my surgeon, having initially thought I preferred he idea of using my own tissue -  but a) he said I didn’t have enough fat (can’t quite believe that after two children and a greedy life!) and b) seeing if everything could be done in one go, which seemed like a neat idea. He said it could be ‘temporary’ and replaceable if I didn’t like it, but I am 61 this year and although fit and healthy (or so I thought), I don’t want this to drag on for years.

 

Keep doing the exercises is my advice, and keep walking about as much as you can - the sooner I can get rid of these uncomfortable DVT stockings, the better!

 

Keep,your spirits up, ladies - we can get through this!

Hugs BMx

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Re: SURGERY AUGUST 2018

Hello I thought I would pop over.  I had single mx no reconstruction on may 11th and have had 3 X Fec chemo so far and have 3 X T to go, then node clearance and rads after that.  I was offered reconstruction but opted to remain flat because j wanted short surgery.  The mx was very straight forward was in and home 6 hours, healed very quickly, wound was glued and got full movement back in 2 weeks. The scar is healing well and I have found using my knitted knocker (knitted prothestic) really comfy and looks good.  I am very small Chested anyway 36A so not so noticeable.  It's a hard decision to make but you will all make the best one for you, ask lots of questions ask to see photos of different optitons and don't be afraid to question your surgeons, it's your body!  Flat Friends on face book is a good website if you are considering going flat.  Kip x

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Re: SURGERY AUGUST 2018

Thought I'd jump in here as I will be having surgery in two weeks for unilateral mx and recon (LD flap). Having the odd doubt now and again if I do want recon but convinced (as much as I can be) that I will cope better having some form of breast there compared to no breast. I fully accept initially my new breast will not be the same size as my remaining breast but can have lipo-filling next year to even them up or a reduction on my remaining breast. 

 

Belmont Rosie - did you have an implant or a flap recon (DIEP, LD, TUG?). Sounds like you're doing well after 3 days, keep up the good work.

 

Good luck to all of you in surgery this month.

 

 

 

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Re: SURGERY AUGUST 2018

Hi Michelle

I’ve just had surgery (L mastectomy & lymph node clearance plus reconstruction) this Monday, having had 8 cycles of chemo since January, with radiotherapy to come.

 

On reconstruction, it’s a very personal decision - only you will know what’s right for you. I opted for reconstruction because I didn’t want to be perpetually lopsided and/or carrying around a falsie. Although none of us will be able exactly to forget what we’ve been through, I felt that the appearance of a boob roughly matching my remaining real one would be my best bet. Seems rather foolish to be so vain - although I am 60, but it still somehow mattered!

 

3 days post op, I am pretty sore but it is all manageable with paracetamol. I can wash and dress myself, and darling husband is doing his best to prepare meals etc. Am dozing quite a bit during the day to catch up on fitful nighttime sleep, and trying to avoid coughing or sneezing! So overall, don’t worry too much - it will all pass, and then you can get back to what you enjoy with all your usual energy.

 

Keep well, and good luck

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Re: SURGERY AUGUST 2018

Hi Michelle

my last chemo was on the 10th July . First three cycles on FEC were not too bad apart from fatigue and mouth ulcers. I struggles with T though as had the awful aches and pains, mouth was worse, thrush in mouth and feet. Had no problems with nails or nausea at all but chemo brain is bad 

my eyelashes thinned but lost them all after the last chemo and they keep watering and I keep getting stuff in my eyes

 So mx is exactly a month after last chemo. Was given no offer of reconstruction, wasn’t even discussed with me ..... as I say I really haven’t had much support. 

Have you had any support from a BCN, we’re you allocated on?

x

 

 

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Re: SURGERY AUGUST 2018

Hi minniem, how did chemo go for you? When did you finish? I had my last one on 20th July so am in week 2 of my cycle. Have you had your pre op assessment? Sorry to hear your team haven’t given you much info. What op are you having? I am hoping to have more info tomorrow.

Thanks Emily that’s really helpful, I will see how it goes tomorrow as to whether the recon is possible now or not. X