So so sorry for taking so long to reply to your messages. Other family stuff took over. My mum has advanced Parkinsons and has moved to be near me and has required a significant amount of my time since I have been out of hospital, so I have not checked or responded to emails in ages.
I had a vac pump on my stomach wound for a good few weeks. It was a complete pain to carry around but I knew it was doing good so stuck with it. My surgeon said it had done what it could to speed recovery so I got rid of it about 3 weeks ago. I have regular checkups but 4 &1/2 months on still have an open wound. My consultant hopes it will have healed in 2 months but I will have a huge dent in my stomach. He has said I can have corrective surgery when he does my revision surgery on my breasts but wants to put it back until christmas as the clot in my legs will still be breaking down.
So, plodding on at the moment. Still feeling very tried and like such a mess. Feels like 'one step forward, two steps back' but sure I will get there eventually.
Thanks so much for your concern and apologies again for taking so long to respond but I am juggling quite a few balls at the moment! xx
Oooooo, and corrr Fairy
Hello dear friend. I've been off radar a while. Thats ab fab bloody brill news ref no chemo and rads etc. Can I come to your new nipple party?!!
Didn't hear from Ruth
Loadsa love to you from meee xxxxxxxxxxx
Just wanted to let you know I'm continuing to heal well. Had 1.2 litres of fluid removed from jelly belly though on Tuesday followed by going out to buy tighter support pants! Post op results day today and got best news I've had in 6months. No chemo or rads just hormone tablets! I've also booked the appointment for my Christmas pressie. I get my new nipples in December.
Would love to hear how you are, Ruth.
Thanks, Delly. You seem to know your way round these things. I'm a bit if s Luddite really. xxx
P.s. Hope all you other previous postees on here are doing well with your op procedures, recovery and are happy with your results.
Sib - Hope you had a great hol in Cypress. Somewhere I've always wanted to go, but haven't yet. I like the Greeks - very friendly, and very good at smashing plates and picking up tables in their teeth!! But maybe you went to the Turkish part?!
Love to everyone
So glad you posted, Delly. I wanted to check how Ruth was doing, but couldn't find the post again! I got a notification following your post. Xxx
Just wondering how you are doing, Ruth.
I'm 3 weeks post op and doing fine, touch wood.
Crikey. What a gawd awful rotten time and bad luck you've had. That's putting it mildly and very politely. I hope your tummy heals quickly and, and that your boobs results turn out well for you too, it being with the best of intentions and the reason you're now going through all this other. You're one brave and feisty cookie. Wishing you continued strength.
And Awww on your daughter. But if only she knew and understood what Mummy's been going through.
Fairy Dust - Hope your op went well yesterday and you recover well and quickly, without Ruths complications.
Lots of love, Delly xxxxxx
Oh Ruth! As if we don't have enough to deal with. I sort of wish I hadn't read your post yet, as my dmx and DIEP reconstruction takes place tomorrow.
I saw the horror stories when I researched what I wanted, but whilst you know it can happen, you hope it won't happen to you. I'm so sorry you've had to deal with this.
Did they do a CT scan of you abdomen before you had surgery. I had one to check the blood vessels before the surgeon confirmed she would do the op and she said that mine look good. Just hoping they weren't putting their best side forward for the photos and they look as good when they get in there tomorrow.
Hope you don't mind if I post on here, Ruth, how I get on.
Sending you hugs and wishes that your healing is going the right way now. Xxx
I am a way of my planned double DIEP as i have another 8 weeks of chemo and a period for it to clear my system before then but thank you all for sharing your experiences. i can see all cases are different so will hope for the best. Mine will be to reconstruct one breast that has been removed 18 years ago and the other that will needs to go now but the surgeon says he can do this with the amount of tummy fat i have but my breasts will be slightly smaller. this is not my main priority so i am not worried about that. i just want to finally be able to wear a normal bra and feel normal again. i know they will not look as they were but think what they can do now will be what i am looking for.
Thank you for all this information.
Sorry to hear your story. I too have been through this 9 weeks now. I can only advise you to mobilize as much as possible after surgery. I am still sore following the treatment but reasured it is normal. They told me it would take 10-14 weeks to recover, this is what I am finding. Whenever I feel low I think of the children who have had to undergo cancer treatment, its what keeps me going. Best of luck and remain positive. x
Thank you for this Andi71. It's been really useful to read. I've just got my op date Sunday 29th April. It's been so long coming (diagnosed 21st December after mammogram at the end of October) 6 months more or less since my mammogram. I've had a lymph node biopsy, and then started on letrozole(2 weeks now), but the cancer is still inside me(right side)!
I'm having double mastectomy and DIEP reconstruction (profilactic on left side). I'm also having a level one clearance of the lymph nodes after cancer was found during the sentinel node biopsy. Thought I would feel better now I have my date and after the fight I've had to get what I wanted, but feel really weird and am struggling to sleep, hence the time of this post! I am trying to take tings as they come on a daily basis now, instead of racing ahead and worrying about things we don't know about yet, but I have struggled with this the last couple of days. Reading these posts, it makes me wonder how any of us going through this remain even remotely sane. The "journey" phrase is used a lot, but I sometimes feel its more of a mountaineering expedition. You just get to the top of one peak and feel quite pleased with yourself, before you spot the next mountain in the series which seems higher than the one you've just conquered!
Having people like you show us the best route up the mountain really helps. xxx
HI. I have recently been diagnosed with lobular B C and am due to have a mastectomy and reconstruction next week. It has been really helpful reading about your experience and thanks for the tip regarding a fan and Magicool. Hope you are continuing to make a good recovery
blimey lovey I can’t believe you’ve been messed about so much with cancellations! Let’s hope the 24th Feb is your day.
As far as pain management goes I was hooked up to morphine whereby I was in control of giving myself a boost of it when needed, in the form of a button. To be honest they have the pain management pretty spot on and to be honest I felt comfortable.
on returning home I was given paracetamol and Tramadol 2 x 4 times a day as required. I had Tramadol because I can’t take ibuprofen or codeine because I react badly on them. If I’m honest I could have done with 2 more days worth of Tramadol because when I came off it it was notable.
As for movement, the first few days are the hardest, but to be honest they like you to be in bed resting with a small walk to the bathroom only, then progress to a hallway then before you leave Hospital the Physio team will have you going up and down stairs, which is a lot easier than you may imagine.
youll be shown how to safely get in and out of bed, basically rolling out, it’s very easy and effective. When you walk you have to do so in a stooped position, your not allowed to stand upright as it’ll pull on your tummy.
My operation was on a Tuesday and I went home on the Saturday. I recommend you use a soft pillow for your journey home so that the seatbelt doesn’t cut into you. I was able to move round the house quite easily. I did have to put 2 cushions on top of each other on the sofa so I could sit because the sofa was too low.
I found that that because you have to stoop that I got backache when sitting on the dining room chairs. So I’d eat then leave at the table to go to bed and sit propped up with 4 pillows. Some people talk about investing in those triangle pillows but I don’t think you need to buy one.
once given the ok by the Breast Care nurses a week after the op you are ok to shower. In the meantime I used to put a chair in the bathroom, fill the basin and give myself a wash. I needed help closing my bra, putting socks on etc. I have a shower over a bath and was ok getting in and out. You actually feel great after your first shower it’s great.
2 weeks on, I get in and out of bed really easily, I can do my own socks and shoes, albeit I’m bringing my foot up sat on a chair and not bending to the floor. I can sit in a chair for longer periods of time.
The one thing I would get you to probably consider is sleeping tablets. 3 weeks in and I’m still not getting any sleep to talk of , so today I’ve got a prescription from my Dr. Unfortunately my lack of sleep has affected my mood, so I have felt a bit low. Every day does feel like Groundhog Day for the first 2 weeks.
i found having the radio on was good, makes you feel more in contact with the outside world. Also I’d watch stuff on my iPad, do crosswords etc. You need to find your thing to do whilst resting in bed because it gets mighty boring.
Every day gets easier. My Breast still hurts but it’s ok with paracetamol. I’m very happy with how it looks. It’s basically a Breast with an indented flap of skin where the nipple used to be. There is no more scaring than that. Also, the new Breast sits up higher than the other one, but this is normal. It takes about 3 months for it to settle, drop down.
the tummy is also ok. Basically a scar running from hip to hip. They give you internal stitches, then glue on top of those then surgical tape. You have to replace the surgical tape once a week. This helps to flatten the scarring, so it’s important to do it. It doesn’t hurt to do it.
I’d say overall that the tummy hurts more, but 3 weeks in the Breast hurts more just due to the tissue trying to settle.
let me know how you get on and fingers crossed for the 24th 🤞🏼
Well it’s been a while, apologies.
My DIEP operation went well, just short of 10hrs. The first 24 hours I’d say is the hardest in that you have the hugger blanket on you constantly blowing hot air. I had nurses checking on me every 30 minutes and each time they came in I got them to refresh my flannel with cold water which was on my forehead. It was exhausting, drifting in and out every half hour but the staff were great.
The drains I didn’t find a problem at all. The undignified bit was having a bed pan for a day after the catheter was removed. The nurses were great at helping getting me to roll out of bed to walk to the loo after this. I was fortunate in that I had my own room and shower room. The drains were put in a bag and were easy to transport around. The nurses help give you a bed bath daily.
Removing the drains were absolutely ok. You wince preempting what’s to come, but it really is ok.
After 4 nights in hospital I came home with Tramadol. I won’t lie, sleeping is hard going and I have had a few meltdowns due to extreme tiredness and frustration at not being able to do much.
i broke a couple of rules when it came to the wearing of a bra 23hrs a day and the large pants. My tummy felt so tight and sore that I only wore them during the day, and at bedtime switched to just normal knickers. This helped me get more sleep. I also did the same with my bra. Although I’d say bruising on the Breast was the thing that hurt the most rubbing against the bra. 2 and a half weeks on, I now wear the bra 24\7 and only change it once I’ve had a daily shower. The big pants still stay off at night.
After one week post op I had to go back to hospital to have the dressings changed and have a check on the surgical sites. Both are doing great. I’ve been give tape to reapply every 7 days along my tummy site. Again, I winced doing it, but only have 4 more weeks of it. Beneath the tape is glue, beneath the glue is internal stitches. The Breast needs time to settle and naturally drop which is normal, so it’s sitting higher than my other one.
If if you have any questions I’ll be happy to help xx
Good luck ladies with your forthcoming reconstruction ops. I am 10 weeks post my DIEP/muscle sparing TRAM. Trust me, there may be some times when you feel the pits but it is so, so worth it. It has done my mental state a world of good in moving forward with my BC journey. Sorry for the cliche.
I have been one of the lucky ones and I have recovered very quickly. I drove again at 3 weeks (having checked hospital blurb and insurance), worked from home in a similar time frame and pick up my tennis racquet again this week. 😀. Things that I have found difficult? Sneezing and mashing potatoes!
Some tips that you may find useful. I drank copious amounts of water post op whilst I was hooked up to my catheter. May be an old wives tale but I did it thinking it would flush the anaesthetic out. I put all my essential needs, phone, book, lip salve, wet wipes, etc. etc. in a small bag which I asked the nurse to place on my bed table post-op. You won’t be able to get it yourself from the locker! Make sure you also have some front opening nightwear for those hourly flap inspections.
Since I was glued together without dressings, I could shower and so my drain went in a plastic carrier bag which I hung off the shower mixer valve. Finally, learn how to roll out of bed. This is the easiest and least painful way and I found a you-tube video demonstrating the procedure. If you sleep at home on the wrong side of a double bed, consider swapping sides so that you can manage it.
Wishing you both all the very best. Ezzie. Xx
Itl’ll be good to stay in touch 🙂 and thank you! Hopefully I won’t be telling you to upgrade to a BIG fan! 🌪💨
i had my surgery prophylactic most of my family have had BC so feel lucky not to have had to go through what you have been.
I can tell you though that you will be doing the very best thing you can to protect yourself and I know the results will be great this surgery is amazing despite any setbacks I've had I would do it all again.
they can give other pain relief other than codeine.
Its more discomfort than pain in the stomach but initially it feels frightening trying to get out of bed, you will feel you can't move a step, but by day four I was doing laps of the ward.
I didn't have much breast pain but the tummy is quite uncomfortable.
just remember that you will think you will never be able to manage but it quickly passes but rest rest rest and try and get walking even just laps of the house as soon as you can.
i had a double mastectomy with double diep recon in August 17.
you will need a lot of help when you come home to shower etc Especially first two weeks. it is especially hard with a double as you can't lift either arm. Fatigue is there for quite some time. My surgery was nearly 12 hours and I then had a further op 3 weeks later due to the would opening I lost a small portion of the breast! But even with this I would def recommend, the results are excellent BUT minor complications I think are quite common with double procedures.
you won't be able to have your little one even sit on your lap for few weeks and def not lift her up I would say at least 8 weeks from my expierience.
the first night is certainly the worst but mainly due to the heat if they use a bair hugger to keep you warm, take some flannels with you and get the nurses to wet them and put them on your forehead and neck as the heat is pretty intense.
it really is worth the recovery time and each day you will feel better but it is more difficulty having the double in terms of needing more help when you come home.
if you need more info please ask and try not to worry the waiting is the worst bit.
Hi Ruth - I'm from May 2017 Chemo monthly group and one of the ladies on our forum Rosie65 - I'm quite sure had this surgery - it might be worthwhile you browsing our group and maybe asking her your questions. We are a friendly group of ladies and no-one will mind you asking your questions.
We are all approaching the end of our active treatments and we have lots of knowledge/experience between us now!
Good luck and hope someone is able to answer your concerns very soon x
I can't answer your questions but there is a very good closed Facebook site for ladies who have had or are about to have reconstruction, I am sure you will get answers if you joined it's called Breast and Mastectomy Reconstruction Uk, I am seeing the Plastic Surgeons in Feb to discuss my options and it has ben very helpful for me.
Good Luck and Best Wishes
I have had a right side mastectomy previously and, having found out I have the BRCA2 gene mutation, I will be having an elective mastectomy and reconstruction on both sides (DIEP flap). Surgery will be Jan 13th. I have a 2 year old daughter. We have no family support but I have my husbands support and offers of help from friends.
What I am trying to find out is a realistic idea of how long recovery will take and what I will be able to do by what time. My husband wants to understand if he is looking after our daughter how much care he will need to provide me and what I will be able to do by myself. He might be able to work from home some times but I may need to be left alone at others.
Also, when will I be able to lift my daughter etc etc.
Just hoping someone has experience of this and can give me a rough idea. I know recovery will be much longer than for my mastectomy as the surgery on my stomach will be major.