I have just had my dates through. Was hoping to start after Xmas but no such luck! I start on 10th December and have a pre-Chemo group session on 7th December. Absolutely dreading it although I know they will talk it up on 7th. So many concerns, but everyone keeps saying we all react differently to the treatment (and the treatments are varied anyway - mine is for BC), so you don't really know until you start!
Thanks for the message. I am ok 👍 and thank you for asking 😍 We have been away for a long weekend to Dundee and St. Andrews. We walked so much I was too knackered to type anything on here!! I’ve managed to read most of it though.🙂
The pace hasn’t stopped today either because I’ve been up at the hospital getting my tattoos done for rads. Now I’ve got to make tea, but bare with me and I’ll do a longer post tomorrow, when life has calmed down a bit.
Im glad everyone is alright though and will write a longer message tomorrow. I am glad that you and Annie are recovering well from Surgery and that Mary Kamille is now on the mend and Pastamissus has now finished rads.
Hi Susie B
Thanks for your kind words. Yes my surgery was Thursday so 5 days post op now. Fab to hear you have finished chemo. Did you have 6 cycles? I do read through your forum but struggle to retain where you all are in your treatment regimes. You are all such a wonderfully active group and a great support for one another. Do you know exactly what surgery you are having or will you find out more at your pre op? All I can say is with my surgery it was sooo much easier than my chemo 💕 Take care xx
Huge congratulations to your hubby. You're looking really well after your surgery too. Was that on Thurs? I've recently finished chemo and due to have surgery soon and dreading it but almost getting to that come on let's get it over with stage. Pre op stuff due this Friday. Take care. Susie B from Feb group. xx
I've been using Vaseline Aloe soothe as moisturiser. I started zoladex injections 2 weeks ago, and am on exemestane. So far no side effects 🙂
Many thanks, Drummerswidow. I am hoping I don't get a setback on my taste/nausea/eating problems which had got slightly better.
Great to hear this pastamissus. I’ve been told it will be approx 8 weeks before I start mine. Still don’t know fully what’s what until I get results from my surgery. How do you feel now you have finished treatment. Do you have any major anxieties about the future?💕
Good luck Drummerswidow, another hurdle you are tackling 💕
LB2, you’re getting there with your rads. Is it 15 or 20? Sorry if you’ve already said 💕
Thanks for the insight Pastamissus, it is good to hear you have had no problems. I am 5 rad treatments in and so far so good, no waiting for treatments at all. I am using Aveeno at night and aloe vera gel when I get home after treatment but no signs of burning yet. I don't put anything on before treatment although they told me a little bit of the aloe gel would be OK.
Dikat - you look amazing in your pic, well done to your hubby!
Well done! Bet you’re glad that the rads are over and done with. Another one to be ticked off the list. Are you having any more treatment now?
What cream have you been using? I’ve got my first rads today.
I’m glad that you have not been too tired with it all. I’m tired to start off with lol! Not sure if it’s the chemo or the Letrazole.
I have finished rads. No side effects apart from skin feeling slightly sunburnt - still moisturising three times a day. Tiredness not really an issue, apart from the times I had to wait 2 hours - it was the waiting that was tiring rather than the rads. Much much easier than chemo 🙂
Dikat, that’s fantastic news 👍👍glad you are recovering well 👍👍big thanks to your amazing hubby too 👍👍sunnydaze I loved Eurovision last night 😁😁I’m a cheese ball 😁😁wanted Australia to win though. During rads please keep hydrated too lots of water it’ll help combat the fatigue, pace yourselves, get air to skin as much as possible and slap a dappaer doo be with the cream, I washed in hibiscrub during rads too 💕💕✨✨Shi xx
Wow so much going on struggling to keep up so if I miss anyone but am still thinking of you all.
Dikat congrats to your hubby on his run and time. He must have been so proud having you there. You look amazing 😀. What a great thing to do, you must be so proud of him too.
Dikat and Annie so pleased surgery went well for you both, it’s must feel a relief.
Pastamissus so pleased your rads are over. Hope you’ve had a chance to celebrate it or mark the end of that part of your treatment. Hope the hormone therapy treats you kindly.
Drummerswidow good luck luck for your start of rads tomorrow.
G you asked about recons. I had a TUG (thigh) as had no spare fat elsewhere. Obviously I know it’s all dependant on how much you need, but this was my only option if I wanted to use my own tissue. I had same time as mastectomy but recovery wise was out of hospital in 3 days, doing light chores and gentle walk outside in a week, driving again at 4 weeks, Pilates class at 8 weeks. Luckily for me my recovery hit the textbook milestones, but being young (46), fit and having my husband all helped speed it along. I wish you well in whatever you decide it’s a very personal decision.
Jayne enjoy Pilates and Sunnydaze hope your swimming continues to give you strength and calm.
I’m starting Rads tomorrow. Everyone says it’s easier than chemo. Have you looked on the Radiotherapy section on the forum? There is some advice there as well. You may suffer with fatigue but not everyone does. Also you need to look after your skin where you have the radiotherapy but your unit will advise you.
I’ll let you know how I get on. Xx
That's really good news, DiKat. You are doing so well and I hope everyone spoils you with 'goodies'. Surgery is definitely the easiest part!
Did you have any SEs with Rads? I haven't started Rads yet but it is the last bit to come and I am wondering if it was like chemo in terms of SEs - particularly affecting taste and really awful energy levels and fatigue. Better to know what to expect, I think.
Anyone else who has completed Rads - be grateful to hear what you experienced.
Glad all went well absolutelyannie and that you don’t have a drain.
Shi, I’m doing surprisingly well from the surgery. Doing my exercises and have good movement in my arm. I’m at hospital Wednesday to have the wounds checked. Had a few visitors yesterday morning so lots of flowers, fruit and chocolates 😁 Went out for lunch and then had a lazy restful afternoon. Going to watch my hubby do the race for life 10k this morning. He has raised over £1500 which is fantastic, then out for lunch again today so guess it will be another restful afternoon. Tastebuds aren’t fully back to normal but definitely better than they were. Hope you are enjoying your holiday Shi and hope everyone else is having a decent weekend. Love to all 💕💐 xx
Absolutely Annie 👍👍😁😁👍👍great news, glad everything’s gone well ❤️❤️Dikat 😘😘sending you some big ✨✨✨✨✨rest up and let us know when you can how you are ❤️❤️💕💕✨✨Shi xx
Good news about your lymph nodes and no drain. I have been referred to a MacMillan Psychosocial Social Worker who has helped me.
I went out soonish after surgery. I had a lot of seroma so had to go back and have it drained. I did get the bus home once as I hadn’t got enough money for a taxi! I just about got back to the house. I went for short walks up the road soon after surgery, within a couple of weeks x
Finished radio this morning :-))))
Just zoladex and exemestane for the next 5 years.... actually that's going OK so far, get hot spells but no sweating so easy to cope with. No SE from exemestane so far
CONGRATS pastasmissus! All clear ahead, now!
How are you after your surgery.
Mine went well = no drain as they found no cancer in the lymph node. You should have been in the recovery room!!! I said no drain that is good news!!!! I was dreading the idea of carrying a drain around all day.
So sorry to hear how ill you have been. Focus on you getting better. Each step at a time and baby steps at that.
I live alone and noticed in the information given to me at diagnosis we can ask to speak/see the hospital social worker. Like you I am dependant on my sister to come to consultations because I am partially deaf but because she is at consultations, I sometimes get the impression my team think we live together - which we couldn't!!!!
Do investigate with your macmillan nurse about the hospital social worker.
Any people that have had surgery - how long before you left home on your own after your operations. Thanks in advance. I hate having to stay indoors but I fainted at the bus stop when I was too eager to get out and dont want to do that again.
Pastasmissus congratulations on finishing radiotherapy? Have you celebrated? I found the end of chemo extremely anticlimactic! I'm so impatient, like someone else said, to stop being cancery and get back to having some fun and not jumping out of my skin when the door bell rings and I dont have my head covered!
First of all, great news that you don’t need radiotherapy. Yeah! There is a light at the end of the tunnel. Good luck with your gene testing.
I had a diep and I love it, you honestly cannot tell that I have had a mastectomy, it’s soft and matches my real boob perfectl, very natural. However, I agree with you and can understand the need to have “ two sisters” . I would hate to have an implant on one side and a diep on the other. I only had enough tummy fat for one breast.
The only scarring I have is instead of my nipple I have a circular disc of skin a little bit bigger than a 50p . However, I will have a nipple tattooed on at a later date to hide all scarring, so you really cannot tell. I could confidently wear a bikini. The downside of this surgery is I have a massive scar from hip to hip. I had a c section previously and the scar is treble the size, but it’s easily hidden and I do now have a lovely flat tum and the scar is hidden under my pants. 😊. It’s basically the same operation as a tummy tuck. If you have Netflix Louis Theroux documentary “Under the knife” shows a woman go through a tummy tuck if you wanted to see the size of the scar.
I only had enough fat for one boob. I know a delayed diep reconstruction would involve significantly more visible scarring than an immediate diep reconstruction . I did not have any muscle from my tum removed. I did not go for the op Stuck at 14 went for purely because I am a swimmer and I did not know how this would have affected my swimming. I also had a bit of a tum that I was happy to shrink.
The operation is long and involved 3 surgeons. I think I was in the theatre at least 5 hours and I was in hospital for a week. I could only walk to the end of my cul de sac by the end of the second week. By 4 weeks I was doing really well and could walk a couple of miles. By week 5 I had to start chemotherapy!!! I was fit and healthy and swimming and cycling before surgery and had a good diet, so I was in good shape beforehand and I think this really helped with recovery.
This all sounds really grim, it is massive and I often wonder if I ever had a recurrence I would lose all of this , it would have all been done in vein.
However, my confidence is sky high with regards to the results. I was happily wearing a vest top today and I definitely have two sisters, that are entirely natural and for me, I made the right decision.
I think it is a very personal choice, as you know. You can only do what is right for you. We are all so different and there is no right or wrong. I have good results, but at a high price in terms of length of op, scar across my tum and a longer recovery, but now it is all behind me.
Good luck with your decision. I am happy to share this personal information on here because when I was doing my research there was hardly any information on personal experiences and I would have benefited from knowing more from other diepers.
Pastamissis well done for finishing rads. Brilliant 😊 How did you feel, were you very tired? Did you have it done at The Western and how long did you have to spend there each day? I am starting mine on the 7th June up at The Western. I wondered how long I would Have to be up there.
Hugs to all and gentle ones to the surgery ladies.
Hi G- best clear up I didnt mean I was recovered in 3 weeks- it did take a loooong time to feel normal- but it was ok- it was doable.
I was told not to expect the gene test to be positive too- it was a horrible shock and they've said the other surgery should be within 6 months.
I hope you get what you want. Good luck with your future discussions. Xxxx
Thank you Stuck at 14. I have now been approved for genetic testing so go in on Tuesday to do that and will hear back in about 2-3 weeks. Obviously if that comes back with anything then the plan may have to change, but I think we are anticipating it will come back negative so it will be back to my personal argument of having mastectomy on my ‘healthy’ breast (although my invasive and non invasive cancers didn’t show up in my other breast on any scans etc only the biopsy of a lump that was expected to be nothing hence one of my reasons I want the other gone as I don’t trust my body at the moment).
I really think you will be fine having your other breast reconstructed from another part of your body from a look and feel point of view as it is your tissue so will respond with your body over time, the actual having to go through the op is obviously far from ideal for you though, when do you think that will happen honey?
Thank you for sharing that you think in theory you would have gone for implants if had known you were going to have both, that is my leaning I think without looking into it too deeply yet (I have books to plough through when I can face it to see if this helps me form an opinion). I can’t believe you recovered that quickly, well done you!! I have older children than you so that wouldn’t be as much of an issue either, sounds like you were amazing!!!
Well it is the weekend ladies, thank god! I will hold up my large gin glass....of Diet Coke (all I can stomach)...and cheers to all you wonderful people and hope you have some nice smiles over next few days x
Finished radio this morning :-))))
Just zoladex and exemestane for the next 5 years.... actually that's going OK so far, get hot spells but no sweating so easy to cope with. No SE from exemestane so far
Hi G- that must feel lovely to know you dont have that big bit of treatment to go through.
I had tram flap recon on my left and after my treatment I will be looking at the back muscle one because of brca2 status.
If I knew that I was going to have another recon I think I would have had two implants. I'm probably looking at quite different boobs in feel and appearance.
We're young G! The recovery for me wasnt as bad as my c section- might have been the lack of a baby to keep me busy- although I still did my best with with my 5 and 2 year old. I needed day to day help for 3/4 weeks I'd say. But that was childcare and housework. It wasnt too bad. And I am so happy with the results.
Please dm me if you have more qs. I've plenty of time on my ha ds!
Hi DiKat, I hope the next few days continue to progress equally as well for you, well done!!!
I have had some good news this week whilst trying to get through the SEs of my 7th chemo....still feeling rubbish and it was a week today since had it 😔. I no longer need radio!
So far this has been my path....lumpectomy Oct ✅ mastectomy in Nov then needed with a tissue expander not yet expanded✅, 8 chemos (7✅), radio was planned to start two weeks after last chemo at end of May but it has since been revisited and confirmed it will be of no benefit to me. So from a recon point of view this makes my options a little less restrictive and it can obviously happen sooner too. Question I have is has anyone had a DIEP or planning to? I was always having an implant but the suggestion now is I may not have enough skin left to do it (not sure if this is because I haven’t had the tissue expander expanded due to radio being on the cards??)
I don’t have enough fat to use any other areas on my body (prior to chemo I may not have had enough on my tummy but now I do). It seems like such a massive operation to go through despite being young (42 🙄) healthy. I also won’t have enough to reconstruct the good breast if I get approval for it to go so that leaves me in a pickle again as I just want two healthy boobs back that work like sisters with whatever my body does so I can just forget about them....or at least try to day to day!
Any advice ladies generally really on what you have discovered if you have indeed had or looked into recon?
I will be on tamoxifen for 10years after chemo so my body is going to be fluctuating etc all over I suspect for some time to come and I just wanted recon to be just sorted as quickly and easily as possible.
That's great news. Hope all you other 'surgery' ladies are OK, too.
One thing about surgery I found is that it makes complete sense emotionally - cut away the bad bit and it can't harm you any more. So much easier to accept than Chemo - a cure which makes you feel terrible and does goodness knows what damage to your body in the process? Yes, I know what it is all about from the intellectual point of view, but my emotions count for more some of the time! Plus Chemo goes on for such a long time whereas you will be completely healed and back to normal from surgery, DiKat, within a month. Don't rush it and be careful with the exercises - gradually increase your efforts.
Hugs to all of you brave ladies!
That does sound pretty grim Mary Kamille and yes I agree, the body has a massive healing potential. Sleep is a great healer, I think. The body can just get on with it.
i don’t know about anyone else, but I am so fed up of being seen as “the cancer patient”. How are you feeling today etc? I just want to be me. Not easy because the baldness gives it away. I feel people are either nosey and I feel very raw and don’t want to talk about my trauma. I just want to have a normal conversation that doesn’t involve health and one where I am seen as an equal, not a blooming cancer victim/patient.
Anyway, Rant over! I’m just amusing myself with a bit of retail therapy. Currently looking at garden furniture 🤣🤣🤣
Glad you’re back with us Dikat and hopefully no more nodes removed and your healing goes well.
Hi Jayne 1966
Several people are talking about exercise and weight gain just now. Surely it's the steroids you were on over Chemo that caused the weight gain? Have to get them out of your system before you can get back to a 'normal' weight - whatever that individually might be! With what we are all going through we need time more than anything else right now to help us recover. Don't be mean on yourself!
I am the reverse - trouble eating and have lost about a stone over the period. I hate the weight loss because it makes me look like a really old woman!
Gosh Marykamile that sounds like a horrible couple of weeks. I'm glad you're feeling better now.
Also glad it made you smile and that I'm not alone. I'd go as far as to say that I want to scream get your hands off me to everyone apart from my babies and my husband (if he chooses his moment to give me a hug VERY carefully!)
Onwards and upwards is my motto at the mo.
Hi Stuck at 14
Your comment on how you had had enough hands on you really made me smile, and about the cannulation, too!
I was re-cannulated 9 times in hospital recently - over the 14 days - and they could only use the left hand because of my mastectomy on the right side. Every daily blood test was a nightmare because they had to get a succession of registrars and doctors to have a go, after the blood collection personnel, having prodded me about with those butterfly needles for about 10 minutes, gave up and wheeled their trolleys away. (Slight exaggeration there!) I felt like a pin cushion and so bruised. However, all gone - almost - now. Shows how quickly your body can respond and heal if they just leave it alone for a while!
i started taking Letrazole 11 days ago. Having some hot flushes and a few night sweats. I’m very tired but that could be due to finishing chemo 3 weeks. My Breast Cancer Nurse said stick with for a couple of months and see how I go with the se’s.
Excellent news DiKat, rest up and recover. Fingers crossed for a good node result. Yes the wire placement was a right palaver, I am sure they could come up with a better way of doing it.
I am psyching myself up to start taking Anastrazole tomorrow, from what I have seen on the other forum the side effects can be horrific so I will see how I am in a month or so. Anyone else taking it?
Glad you enjoyed LGFB Jayne and yes definitely time to put you first ❤️
My op went as planned ladies. Went to theatre about 2.30pm and was home by about 8pm although still spaced out on Fentanyl. Feeling a little sore as expected this morning but just done my first lot of exercises and all appears to be ok. The most painful part was having the mammogram to check that the guide wire was in place, ouch! Have a lovely day everyone 💕 xx
Kc72, thank you. It was a fab session and I made a new friend 😂😂.
Found out about a plates class and another group to get involved in. Was lovely to talk to others local to me in the same position. Make up tips to practice now whilst I have time #putmefirst ❤️
Jayne1966 enjoy your look good session tonight. Hope you enjoy the tips, the goodies, and the chat with other ladies. And your nerves are 100% to be expected but we are all behind you and rooting for you. Take care of yourself.