Gosh, 14 months since my operation and it seems like forever ago.
Don’t get me wrong, I have a permanent reminder of what I went through but I am amazed at the fact that I continue to “make progress”. I’ve pondered over this statement because “making progress” makes it sound as though things haven’t been great. This is not the case at all.
I’m an impatient person and wanted to be “back to normal” as quickly as possible but I did wonder if I would ever get there. Well, I have a new normality and you know what, it isn’t at all bad. My surgery has not stopped me from doing anything at all and for that, I am extremely grateful. My new normality thankfully isn’t too dissimilar from my pre-surgery normality.
Whilst I might not have all the flexibility I used to have in my yoga practice (there are a few poses where I am unable to get into the position I used to be able to), I still have my strength and can do almost every pose. I can even do gomukhasana (cow face pose) which I was unable to do a few months ago! Now, that is progress!
Progress is what it is all about! Having never had surgery before, I was a little unprepared as to what the recovery would be like and I genuinely believed that I would always feel the tightness in my back. That tightness hasn’t totally gone away but it has significantly subsided – either that or I’m getting used to living with it. Whatever the reason, I’m happy about it.
I continue to build up the weights in the gym and I’m back walking 15 miles or so. I’d like to think that I’ll eventually by able to walk 20-25 miles in a day again but we’ll see. It’s certainly not the end of the world if I don’t.
The scar on my back continues to fade and the scar from my lymph node op is barely there. My implant has “settled” into my body and no longer feels like a visitor.
I’m still debating on the 3D nipple tattoo. I don’t feel as though I need to and I’ve always said that I’d never get a tattoo but this somehow feels different and I am a bit of an ocd freak when it comes to uniformity. The surgeon did a great job and although I’m lucky that my real boob is not yet letting gravity get the better of it and it looks almost as good as the false one, the lack of a nipple is the biggie that throws the symmetry off kilter.
I follow quite a few 3D nipple tattooists on Instagram and their work is amazing. They look so real. I don’t know if I’ll pluck up the courage to do it. When all the shenanigans of Covid-19 are out of the way, I might investigate with an actual specialist tattooist!
I’ve had a couple of hospital appointments and my annual mammogram since my last post. Thankfully the mammogram was clear and the consultant has signed me off for another year. He’s pleased with my progress.
I’m still seeing the oncologist every 3-4 months or so in order to ensure my medication is still right for me. I’ve been taking Tamoxifen for 14 months now and am so pleased to say that I haven’t noticed any side effects. Having read what others are going through, I was worried about this but I’m lucky! I do always worry when I get a new brand of tablet in case they are the ones that through me into side effect hell! I’ve currently got 3 different brands in the cupboard! Fingers crossed.
Tamoxifen brands
I’m next back at the oncologist in July. I’m continuing to evade the monthly Zoladex injection as my periods are hit and miss. I’m not sure if I’m going through the menopause – I’m not experiencing any hot flushes or other symptoms but that doesn’t mean to say that I’m not.
I continue to be grateful for “my experience” and especially so in these current times of Covid-19. I can only imagine how experiencing breast cancer and surgery during these times can be and my heart goes out to anyone going through it. However, it’s so important that they do – as we all know, the sooner we detect it, the better chance we have.
So, 14 months on and all is good. Actually it’s great! I will try and be a bit more frequent with my posting because I do know that reading other people’s experiences helps.
28th February 2019 My sister came up from Leamington, picked up my mum from Sheffield and they came over armed with lunch for a ‘picnic’ in the kitchen. It was, as always lovely to see them and they were pleased to see that I had improved even further.
My sister had already been warned that today’s job was sorting out my flowers. I have been very very lucky as I have received loads. Whilst Tim has done a great job putting them in water, his forte stops there. A flower arranger he is not! Some of the flowers needed sorting out as some were a few weeks old – my sister seems to have a flair for this.
1st March 2019 – 7 days home A lot changes over time and whilst I’m not sprinting around, I am definitely getting around a lot better. Don’t get me wrong, I’m still feeling a bit “tight” around my wounds and I haven’t got loads of flexibility in my arm but I definitely have more movement than I did last week.
I keep forgetting that it’s only been a week or so since my op as it seems so much longer. There’s weeks left of recovery but it’s definitely heartening to know and feel that improvements are being made every day.
I’ve had another visitor today – my lovely friend Loraine from across the road. She brings some flowers………. it’s funny as everyone apologises for bringing them but I absolutely love them all and besides, you can NEVER have enough flowers in the house.
Bright and cheerful flowers from my lovely neighboursGorgeous flowers from my gorgeous friend
2nd March 2019 I just couldn’t get comfortable at all last night. I rearranged the pillows several times before settling down but it didn’t make any difference. My back was causing me a little discomfort and no matter how much I moved around to get comfortable, there was sadly little difference. I’m therefore a tad tired today.
I’m always stiff when I get out of bed but it does subside a little after moving around (although it never completely disappears). Thankfully progress continues so much so that I managed to put on a sweater today (OK, it was a big, baggy one) rather than a front fastening top / hoodie….. another step towards normality.
Despite having a dishwasher, I also managed to wash the pots by hand today. Granted, it took a little longer than normal as I had to use my left hand on occasions to wipe but I managed it. I hate having pots lying around (I know it’s not the end of the world). I just like things to be ‘in order’. That’s the way I work in everyday life – organised, lists, more lists, tidiness, even more lists. Tim will probably go mad when he finds out that I have done the pots but he’s at golf this morning and then football (watching) this afternoon but, anything I can do to help and also for my own sanity, I’ll do it.
Tim’s friend comes to pick him up for football and brings a lovely posy of flowers that his girlfriend had hand-made and tied as well as a daily journal. He’s a counsell0r and knows that I love anything and everything about self development so the book was an especially thoughtful gift (and also, something a bit different). The problem is that it’s just too nice to write in – even in my “bestest” and neatest handwriting.
I like the fact that Tim is getting on with his life and not feeling that he has to mooch around the house looking after me. It’s important.
Cute homemade and hand tied bouquet from my friend (very rustic)
4th March 2019 – Unplanned Hospital Dash I’m a Sheffield Wednesday fan and tonight was the derby with Sheffield United. We sit down to watch the game as it’s on television. The Blades (Sheffield United) are in a promotion position and we’re mid table so it should be a good game.
We sit down to watch it and at half time, I decide to make some crumpets and hot chocolate but I’m not feeling 100% – it feels as though I have some sort of ‘pressure’ building up down my side. I just don’t feel “right”. I feel as though I am going to “pop” and whilst I am not in any pain, i do feel uncomfortable.
I decide to look at my drain and notice that the green stopper is no longer depressed. My drain tube is also full of liquid. I phone the hospital as advised, and they suggest that I come in to get it replaced.
It’s 9pm so we change out of our casuals and make our way to the hospital 20 miles away – so much for watching the match! The nurse changes the bottle and instantly, I feel my body “deflate” and the pressure subside. It was such a relief. We finally arrived home around 11.15pm….. what a day!
My final drain
6th March 2019 – Pancakes and Skinny Jeans Yesterday was Pancake Day (aka Shrove Tuesday) and 2 weeks since my op. We didn’t get chance to have pancakes yesterday so I thought I would make some for this morning. I made the batter before Tim got up and thought that we might have them with a savoury filling for lunch. Tim however wanted sweet pancakes and for breakfast (very unusual). I obviously didn’t flip the pancakes as, although I’m getting quite adept at using my left hand and arm, using my left arm to toss pancakes in a pan is a step too far. Instead, I used a spatula to turn them. Tim and I sat down at the table in the kitchen to devour them the traditional way – with golden syrup and orange segments – they were delicious.
Despite the circumstances, it’s been really nice spending so much time with Tim at home. He’s been an absolute star (although I wouldn’t have expected anything less). I’m definitely much more mobile so am able to do more and more myself although I am still having to rely on him to wash and condition my hair. My work colleague, jo has nicknamed him Vidal…… mmmmm, not sure about that!
I also managed to straighten my hair (using my right arm – yay!), put on some make-up and put on my black skinny jeans for the appointment with my consultant. Just wearing “normal” clothes instead of joggers and loungewear is a huge deal and soooo nice!
The consultant’s appointment goes well – all wounds are healing well and as expected. The cosultant took another couple of photo’s of my front and back probably for use in his “portfolio”. I also said goodbye to the final drain. Wow! What a huge difference that made. I wasn’t actally expecting it to be removed as I thought that there was still quite a bit of fluid but I wasn’t going to argue with the experts. I didn’t realise just how much it was hindering me. It’s not that it was heavy or overly restrictive, granted, it was a nuisance but now that it has gone, I feel totally liberated. I have so much more movement…… I now have to be careful that I don’t do “too much”. I now also have to keep an eye on my back (probably easier said than done as I don’t have enough movement to turn around fully yet) to ensure that it doesn’t swell. If it does, I’ll need to go back to the hospital to get it aspirated….. the nurse doesn’t think this will happen. Fingers crossed!
3 Days Post Op – 23rd February I “receive” my first flowers from my mum and family…. a stunning bouquet of white flowers. They know me well! I also receive a lovely rose and freesia bouquet from my friend in Newcastle. They arrive by interflora and are absolutely gorgeous. I love flowers!
I also receive my first visitors today – my mum and my sister. My sister had travelled up from Warwickshire and had bought me some absolutely gorgeous roses and a Tisserand diffuser with some lavendar oil. I feel spoiled.
I think they were both surprised at just how well I looked (not sure what they were expecting). I do feel good and although I’m a little stiff and sore (mainly from my back), I am not in any pain.
I ask if they want to see my new boob and wounds…. they do! They are amazed at how good it looks even after only 3 days. It’s obviously still swollen and heavily bruised but it looks good. No, it looks great! I haven’t examined it in any detail yet as I’m restricted in terms of movement. They don’t seem to be able to see any wounds around the breast apart from where the nipple has been removed. We think the surgeon has done everything from the back. Whilst I knew this was what he was going to do, I did expect some scarring on the breast itself.
4 Days Post Op – 24th February I can’t believe it’s still only 4 days since my surgery. I continue to feel no pain (not sure if this normal?). I am still taking the paracetamol and ibuprofen just in case though. I also want to try and minimise any swelling.
Getting around the house is becoming easier and I’m getting into a routine with my drains in terms of carrying them around and placing them when I’m sitting. I’m scared that I will catch them and pull them out. Ewwww…. could you imagine?
I’m trying (within reason) to do most things myself, like get dressed, put on my socks, comb my hair, make a cup of tea etc. I’m thankful that I have spent over 20 years doing yoga so I am flexible enough to move into certain positions to make doing such things easier. My legs are also taking a hammering as I’m having to use those to get down to lower levels (pick up my drain bags) rather than bend over. At the moment there is absolutely no way that I can do that. Tim is obviously asking if I need help in doing certain things but I’m not one for playing the patient so we have agreed that I will at least try first and then I will ask him if I need help.
I’ve been advised not to have a shower yet due to the dressings and drains (although I have read on some blogs that others can do this). I’m going with what I have been told personally. I therefore cannot wash my hair. Tim is on this duty and has a system going. I normally wash it every day in the shower but have decided every other day will have to suffice. He’s becoming quite the Vidal Sassoon!
I get unexpected visitors in the afternoon – my friend Rachael and her dad. They don’t live nearby but they have had Sunday lunch in one of the local villages so decide to pop in with some flowers. They don’t stay long but it’s nice to see them.
The fireplace in the lounge is filling up with cards and flowers – I’m not complaining, it’s nice to have something to look at and smell whilst I’m stuck inside.
5 Days Post Op – 25th February 2019 I’m starting to move around a bit more and am getting more into a routine with carrying my drains. I still can’t bend over or lean forwards so my legs are having to do all the work. It feels as though I am demonstrating the best practice for a Health & Safety video (feet flat and shoulder width apart; both arms by my side; bend keeping my back upright and straight; bend at the knees and hips). By doing this I can pick things up from off the floor. so there’s no point in just lying there for the sake of it
6 Days Post Op – 26th February 2019 Getting out of bed is still quite tough although it is getting easier. I still have loads of pillows propping me up and I’m having to sleep on my back. I’m sleeping a bit more than I did in the early days but I guess that”s because I’m getting used to sleeping in this position. Thankfully my many years of yoga have meant that my stomach muscles are such that I can sit up out of bed without using my arms.
I’ve got a relatively good routine going now – I’m up early (I can’t lie in at the best of times but lying on my back is also giving me a bit of back ache so there is no point in just lying there for the sake of it ) and before Tim but I am able to get dressed from my night clothes, go downstairs and make a cup of tea. I can even fill the kettle but I am conscious that I don’t overfill it.
I’m definitely moving around a lot more and am starting to do more and more things for myself like putting my socks on. I have a way of doing it that works. I am getting more adept at using my left hand for things (I’m right-handed). Tim keeps asking me if I need him to do anything – I remind him of what we agreed and say that I will have a go and if I can’t do it, I will ask…… and I will ask! I certainly won’t be trying to play the hero.
One of my drains has started leaking. I’m not sure if it is blood but I can feel it trickling down my side. It’s not a lot of blood and it’s probably because the tape holding it in place is becoming loose so the tube is moving around a lot more.
Tim tries to stick it down but the tape that he uses just isn’t sticky enough (plus the fact that I din’t think nursing is his natural vocation!). He tries his best. I am due back at the hospital the following day so really want to try and manage until then. Unfortunately it keeps leaking and I start to worry if there is a problem.
We have a doctor friend who lives over the road so I say to Tim that we should maybe ask him for his advice. I sit in the kitchen with my boob hanging out whilst Tim goes over the road. Our neighbour is lovely and I feel no embarrassment sitting their half naked whilst he sits on the kitchen floor positioning the drain tube at the right angle and taping it in place.
7 Days Post Op – 27th February 2019 I’m improving on a daily basis and looking forward to hoping that my drains (or at least 1 or 2) are taken out later. I’m also looking forward to having my dressings re-done as they are starting to peel and feel sticky. The one under my arm is particularly annoying.
My appointment, originally scheduled for7pm has been changed to 4.45pm. This means that we’re likely to catch the rush-hour traffics much to the delight of Tim….. not!
The consultant says he has good news – I immediately say ‘is that before the bad?’ but he says there is no bad news. He gives me the low down on the oncology results and says these were as expected. He did say that I need to have an oncotype DX test which will determine if I need chemo. The test will be sent to the USA for anaylsis. I’m obviously hoping that I don’t as I want to get back to normality as soon as I can but if I do, if it’s needed and it helps then so be it! I need to contact my insurance provider for approval and authorisation first.
I then go to the treatment room where the consultant and nurse remove my dressings. It’s not painful but it did feel a bit unnerving. The consultant says my wounds are healing very well so there is no need to re-cover them. It’s best to keep them open to the air.
The consultant also says that 2 out of the 3 drains can be removed…… yay! I had been told that this was a painful experience but it really wasn’t. It was a slightly weird and strange sensation as the nurse pulled the tube out. It was odd but definitely not painful. Having 2/3 of the drains removed was a result and carrying the one bottle around is so much easier. Hopefully that will be taken out the following Wednesday.
I was given a booklet with my oncology results and an explanation of each element….. reading for the next day! It’s Lobular, invasive, 45mm, hasn’t spread, is grade 2, ER+, HER2 negative…… all these appear to be some sort of code for an unfortunate group of ladies who know what they mean.
So, after getting “spruced” up at the hospital, we arrive home earlier than planned due to the change in time and I feel like a small G&T & a game of ‘Sequence’. I haven’t had a drink (alcoholic) for a while but I just fancied a Whitley Neill lemongrass and ginger gin…… lovely!
Pre Op Day 2 – 15th February 2019 A super early start as we had to be at the hospital for 8.15am! This meant a 6.45am alarm call. Normally this would be a lie in but over the past couple of weeks, I’ve got quite used to being in bed until 7.30am.
The drive over the hills was gorgeous as the sun had started to shine and the hills were tinted with a warm pinky hue. I am lucky that this has been my drive to and from work over the past 13 months. It certainly beats the usual built-up concrete jungles surrounding the local motorway network.
This pre-op was more thorough than the last one with a couple more blood and swab samples being taken as well as what seemed like more pages of questionnaires. I’m not actually that bothered about this as I’d much rather everything be in order and accurate.
The nurses, as always were lovely and make a difficult time a little easier. After 45 minutes, I was done…. scary thought that the next time that I’ll be at the hospital will be for the “biggie”. Only 5 more sleeps.
Op 2 (The Biggie) – 20th February 2019 My op day finally comes around and I am thinking that I may be a little bit weird because I genuinely do not feel worried or nervous. Tim on the other hand is feeling a little different. This is understandable. Throughout this whole process, I have felt that it’s probably easier for me to go through this myself rather than watch me go through it. You see, I can handle this. I have it under control.
I set my alarm early as I cannot eat after 7am and therefore obviously need to have something. I have a light breakfast of bran flakes. I can drink up until 11am so am forcing myself to drink water. I’m not a water drinker normally so this is tough for me.
We have to be at the hospital for 12.00 noon so we leave around 10.45am. I don’t want to be late (I hate being late for anything and this is certainly no different). I’d packed my case the previous night so we were good to go on time. I’d drunk so much water that I was desperate for the toilet during the journey. Despite only being about 10 minutes away from the hospital, I said to Tim that I could no longer hold it in. I needed to go. Thankfully, there’s a small road that turns off the ‘main’ road and we find a place to stop. I have no qualms about going in the “open”, after all, I’ve done plenty of long distance walking and wild camping. Unfortunately this road, although not a popular route was a little more open than my usual places and thankfully, I had finished before 2 cars drove past in both directions!
Unlike last time there isn’t much time hanging around. My op is scheduled for around 1.00pm. I guess it’s because it’s a longer operation so a prompt start will ensure that there is plenty of time.
The bed is laid out like last time with a hospital gown, some disposable knickers and a urine bowl. I know the drill in terms of the urine bowl – I was worried that I might not be able to go after the little stop earlier but I managed it….. nerves I guess.
My anaesthetist comes first to talk to me. He’s lovely and very funny. We have a laugh as Tim cracks a joke about smoking. Although I do not need to be put at ease, it’s nice that he’s friendly.
The nurse then arrives to measure my calves for my TED (Thrombo-Embolic-Deterrent) stockings. These compression stockings are used after surgery to prevent blood clots developing in the leg, which is known as deep vein thrombosis (DVT). I didn’t have to wear them last time because my operation was less than 90 minutes in duration. She also takes my blood pressure – it’s bizarre as it’s much lower than when I had my pre-op. I am not sure why I am so calm?!
Soon after, my consultant arrives. He asks me to take off my upper clothing and then proceeds to draw all over me with black marker. I was surprised just how many marks he made but I guess it’s better to make sure everything is right beforehand. He also takes another photo.
I then get changed into my “other” gear. I can wear my own knickers but given that they are going to be removed for the catheter to be inserted, I decide on the “sexy” disposable ones. I look a sight….. gown, disposable knickers, TED stockings, glasses (no contact lenses), no makeup or jewellery and no nail varnish…. not even on my toes. Jeeeez….. I haven’t been out of the house without manicured toe nails since I was around 16! Being in hospital is so not glamorous.
Very glamorous!
At around 1.15pm the nurse arrives to take me down to theatre. I’m still not nervous, not one bit. There is nothing that I can do about this and I have no real choice but to go ahead with the operation….. I can do this!
I kiss Tim and go down.
I’m first taken to a pre-op room. This is different to last time as I was take straight into theatre. A nurse and the anaesthetist notice my hand is still bruised from my last op so they decide to put in the cannula near my wrist. It takes some time but in no time at all, I’m asleep.
I don’t remember much (if anything) about waking up in the recovery room or being taken back to my room. Tim seems to appear almost immediately though (he tells me that the nurse was right next to him when she was ringing him). It was about 6pm. At least he was told that I’d come out of surgery this time (I did mention it a few times to the nurses to ensure that he was told this time!).
I’m wearing an oxygen mask and I’m not in any pain. I’m actually quite comfortable in bed but that’s probably because I have been dosed up on painkillers. I’ve also got 3 drains which are attached down my side. These drains are used to remove pus, blood and other fluids following surgery.
I’d ordered egg mayo sandwiches and cheese and biscuits (I don’t have a sweet tooth) for dinner. I managed to eat the sandwiches and some of the cheese….. Tim finished the rest!
7th March 2019 – Hammocks Today I thought that I’d try on a bra. Not a super sexy, lacy, feminine bra….. a practical, comfy sports bra.
I’d done my research beforehand and had previously ordered several types of front-fastening bras and sports bras from several leading stores. Unfortunately none of them seemed to be that comfortable (and that was even before the op). They all went back….. much to the delight of Tim who thought I’d got a new business sideline in lingerie.
Whilst researching the internet, I read that the bras from George at Asda were very comfortable. Now, I’m a big fan of supermarket clothes….. I especially like the sportswear and summer clothes and although I don’t buy a lot of supermarket clothes, I do know that you can get some real “gems”. There was one particular set (one black one & one white one) that had really great reviews. I therefore ordered 2 large and 2 medium sets. I had read to get a larger size for the first few weeks post surgery whilst the swelling reduces. They were an absolute bargain. I was prepared to pay more than double for one bra, never mind for two.
I was super impressed when they arrived as they felt really comfortable. I wasn’t overly sure where my wounds would be so I thought the soft band at the bottom would be ideal.
So, after being released from my drain, I decided to give the large size a try. Ohhhh, it felt so good and so comfortable. I was worried how it would feel but it really did make a difference both to my new boob and to my “old” one. It was also comforting and nice to see that with clothes, no-one would be able to tell that I’d undergone such surgery. Whilst this has never really been an issue for me and I haven’t thought or stressed over it (it wasn’t a big deal), I was obviously very pleased that I didn’t look any different from before. Even without clothes, the new boob looks amazing – the surgeon really has done a fab job and it’s a very close match to my existing one!
Wearing a bra and also not having to carry around my drains as also given me an additional lease of life. I know I have said before that I didn’t think the drain was a huge hindrance but I now know that I must have been over-compensating somehow as I feel as though I can do so much more today. I seem to have more movement in my arms and am able to turn around more.
Whilst normality is slowly resuming, I must remember that it’s still only 15 days since my op. I know when I have done “too much” and am sensible enough to rest and take it easy if necessary. After all, Rome was not built in a day.
Comfort prevails over style!
12th March 2019 – Progress Continues There’s been nothing really new to report over the last few days apart from the fact that progress continues.
I managed to wash my hair myself on Sunday but I have to say that it was a bit of a struggle. I managed it though and it’s yet another ‘milestone’.
My mum, sister and 2 of my nieces visited on Sunday. My sister shaved under my right arm….. such a nice feeling. I’m still not wearing deodorant here as I want to protect the lymph node scar as much as possible and as I’m not going anywhere, it doesn’t really matter.
I also went out for a walk yesterday…. I would have liked to have done this earlier but the weather has been really rubbish of late – rain and snow so I’ve been cabined up. I thought I’d just walk to the post box (around 150m) but when I got to the end of the street, I thought that I’d be OK doing a bigger loop. I was. I didn’t break any records in terms of speed but I did feel OK.
I’m also now able to lift my right arm up – it’s not quite straight above my head but it’s certainly getting there. It definitely feels as though everything is ‘settling down’. I’m sleeping flatter in bed so much so that I may even try completely flat tonight…. that’s a scary thought but I seem to be loving life outside of my comfort zone at the minute so one more thing isn’t going to end the world.
I’ve also been doing more ‘normal’ things like washing the pots, loading the dishwasher (& unloading it), making tea. I’m doing all of these without feeling as tired as well.
As for wearing a bra, I like it but after a few hours I do find it rubbing on my wounds. I have tried putting it on over a t-shirt and a vest. Unfortunately thought, that doesn’t seem to make much of a difference. I guess the healing of these wounds is the most annoying part.
I’ve taken my last dressing off today (where my last drain was) so I’m going to try a shower! This will be another gain on the independence front and will therefore leave me with just one last thing to conquer – being able to drive. I’m really not sure when I’ll be able to do this as I’m still a fair bit away from full movement. I’m not stressing over it as I know it will come eventually!
13th March 2019 – 3 week op anniversary I can’t believe that it’s still only 3 weeks. So, how do I feel?
Getting out of bed, although easy enough does generate some strange sensations especially around the nipple when I move from laying to sitting. There’s also a weird sensation in my breast as I sit up….. it feels as though things are ‘settling’. It feels heavy. It’s only a passing sensation and once I’m standing after a minute or so, it’s fine. My back didn’t ache as much this morning but that’s probably down to the fact that I slept completely flat and with just one pillow last night. Previously I’d been sleeping with a pillow under my back but in hindsight, although it was comfortable, my back was arched slightly.
I feel great in a morning. I do my exercises and am gaining more and more movement. I am fine that there is a move towards the boob feeling less weird and alien. I am bending forward more.
The wounds on my back are not giving me any discomfort nor are the drain wounds. The lymph node wound is the one that is a nuisance. It feels as though it is constantly stinging. I’m still not using deodorant and haven’t worn a bra for a couple of days so as not to rub or aggravate it. I think it’s because my arm is almost constantly down on it. Prior to the surgery, I’d done some research and had bought the drain dolly bags and a couple of mastectomy pillows. I’ve started using one of these to see if that helps. They are heart shaped and fit under the arm. At the moment I’m reserving judgement.
14th March 2019 It didn’t feel too weird getting out of bed this morning….. hopefully that will continue and the strange sensations that I’ve been having will soon disappear.
I’ve also received some more flowers this morning – these took me completely by surprise but how lovely? They are from Tim’s friend and his wife. It’s such a thoughtful and kind thing to do – I am lucky.
My flowers from 3 weeks are mostly all still going strong. They still look lovely. I keep sorting them out and moving them into different vases when some of the others wilt.
Flowers from a friend of Tim’s – how thoughtful
15th March 2019 – Lunch Date with my lovely hubby It seems ages since I’ve been out of the house (the weather has been so bad lately) and also out with Tim. Today changed all that and it was fab!
I got to act and feel like ‘normal’ today – makeup, skinny jeans, bra – the lot! We first went to a lighting shop as we’re after a floor lamp but the shop turned out to be very small with a similarly small selection of lamps.
We then decided to go for lunch, only the place we’d originally thought of couldn’t be accessed because the road was closed. We therefore went to another pub on the way home. It was lovely to sit, have a drink and food – like I said, it was nice to be normal again! So, despite the trip being unsuccessful from a lighting perspective, there were so many other ticks that I considered today a very good day!
16th March 2019 – First ‘bad’ day An horrible day today not only in terms of weather but also in terms of mental health. Tim is absolutely dreadful and although he doesn’t know it, I’ve had a quiet cry. I’ve been crying for 2 reasons. Firstly because I hate seeing him so down and depressed and secondly because, despite my usual strength, I can’t do this journey on my own, it’s tough enough trying to deal with the physical wounds without having to keep everyone else’s spirits up. I actually don’t know what to do!
18th March 2019 – Wobblies and Realisation I’m not going to lie. I have had my first wobbly today.
I had a call from the oncologist’s secretary today regarding my appointment to discuss my oncotype DX test results…… I obviously knew this was coming but the fact that it is tomorrow, has shook me. I like to have a bit more notice.
Although not 100% sure, I think there will be 2 possible outcomes from the meeting in terms of additional and further treatment…… one with and one without chemotherapy.
Right from the start of the cancer journey, the news is always bad…. first you have the diagnosis, then you find out if it has spread or not, then you discover the size, stage and type and then you find out what treatment is needed which of course can be bad news in itself…… I’m prepared but just not ready for the news.
I want to get on with things, with life. I want to get back to work. I want to go to our home in Spain in May. I want to go on a weekend break in Scotland that I won. I want to go to the ‘dogs’ with my family in June. I want to celebrate 2 of my friend’s 50th birthdays in June. I want to get back to yoga and go in the gym. I want to go to the bottomless brunch with friends in May. I want my ‘normal’ life back. Above all, I don’t want to have to put my husband, family or friends through anymore difficulties.
None of the above will happen or at least it will become more challenging if I need further treatment.
Whilst I don’t know a great deal about chemo (I haven’t researched it or read up on anything…. perhaps I didn’t want to tempt fate), I am aware that it’s tiring and gruelling and that it has some unpleasant side effects. These side effects scare me the most.
My wobbly is relatively short-lived….. I have no control over this. I cannot affect the outcome. It is what it is. With these thoughts in mind, I am now ready to deal with whatever is thrown at me.
19th March 2019 – Singing from the rooftops I didn’t sleep too well last night and coincidentally or not, my arm is aching this morning, more so than normal. Possibly I was tense and nervous at the outcome of today’s appointment.
We’re both up early, me at 6am and Tim not long after. He goes straight in the gym. We leave home earlier than planned and as a result and make our way through rush hour traffic to the hospital – Christie’s. It is one of the largest cancer treatment centres of its type in Europe. It’s like a maze and it take us about 15 minutes to find the right department.
The oncologist calls us in and starts by asking me about my health as this could contribute to the treatment plan. He then explains and shows my oncotype DX test results on the screen / he says they have come back low (8) which means there is only a 3% chance of recurrence and that chemotherapy is likely to have <1% benefit. I feel as though I have won the lottery and I can feel Tim melting into his chair also with relief.
You can imagine how I feel. This is such a good feeling and yet again, I feel so extremely lucky. Whoever is looking down on me…… thanks a million! This absolutely means that the end of the path on this little ‘life detour’ is definitely in sight and normal life can resume shortly. I can start focusing on going back to work, to going on holiday, to buying a new car…… the ‘life on hold‘ button has been released…. and it feels fabulous! I also feel relieved that I also don’t have to put Tim, my family or friends through any further difficulties.
The oncologist explains that I will need to take daily tamoxifen tablets – there are a few side effects but this is a small price to pay. A friend who takes them has subsequently told me that she once met the professor who founded tamoxifen and that the drugs still work 25 years after you stop taking them. I also have a blood test as that will determine where I am I terms of the menopause and therefore whether I’ll need to take an additional tablet. I’m so used to needles now that I don’t even feel it going in….. mmmm, that’s not good!
What is the Oncotype DX test? Although not a new test (it was introduced in the US in 2004 and became available to the UK in 2007), the results of the latest clinical trials in 2018 have meant that it is revolutionising treatment for thousands of women. Women with relevant profile scores do not have to undergo costly and gruelling chemotherapy treatment. That is massive!
The Oncotype DX test is a molecular diagnostic test that analyses the individual biology of a breast cancer tumour by examining the activity of 21 genes in the tumour tissue. The results of the analysis are fed into a formula that gives a Recurrence Score® result. The Recurrence Score result, a number between 0 and 100, can provide information about how likely your breast cancer is to recur within 10 years of diagnosis and, perhaps more importantly, the likelihood that you will benefit from chemotherapy.
Not all women with breast cancer are eligible for the test. To ‘qualify’, the cancer must be hormone-receptor-positive, HER2-negative, and auxillary-node-negative. Around half of all breast cancers, mine included, fit into this category. This test is therefore revolutionary in terms of determining the next steps for treatment.
Tamoxifen I was given a leaflet explaining everything about Tamoxifen and true to my ‘accounting’ and methodical nature, I read it all! It’s a hormonal therapy drug that is used to treat breast cancer although it is sometimes used to treat other cancers.
How it works Hormones are substances produced naturally in the body. They act as chemical messengers and help control the activity of cells and organs. Hormonal therapies are drugs that interfere with the way hormones are made or how they work with the body.
Many breast cancers need the hormone oestrogen to grow. These are called oestrogen receptor-positive (ER-positive) breast cancers. Tamoxifen blocks the oestrogen from reaching the cancer cells so the cancer may grow more slowly or growing altogether.
The tablet is prescribed by the doctor and is taken once a day, preferably at the same time.
Side Effects As with all medication, there can be side effects. These may include hot flushes and sweats, feeling sick, headaches, eye problems, leg cramps, tiredness, skin rashes, hair thinning and weight gain. There are also some more serious side effects – blood clots and an increased risk of womb cancer. Most of the time, these side effects can be managed but sometimes it may be necessary to seek further advice from the doctor.
More than relieved, we return home knowing that I only have to deal with the physical recovery.
I feel like singing and shouting for the rooftops and excitedly message, text and call my family and friends – who can blame me? Today has been a fab day and one worth shouting about! I am thankful. I am grateful. I am blessed.
20th March 2019 – 4 Week Anniversary How time flies!
An old friend from junior school messaged me today just to say that she was thinking about me. She must have a sixth sense as she didn’t know about my current situation. Although we don’t live too far from each other, we don’t see each other that often as we’re both busy – we need to make more of an effort!
Telling people is weird….. I’m usually a very open and honest person and will tell people everything but with this, it feels different. Not because I don’t want people to know but because people always assume the worst when they hear the ‘C’ word. I haven’t wanted or needed sympathy, I haven’t wanted people to worry, I haven’t wanted people to go out of their way.
Besides, how do you do it?
How do you tell someone that you don’t see because they don’t live close by? It’s not easy to just phone them and say ‘How are you? I have cancer’. Saying that though, this is probably the best way because then the other person can tell by the tone of your voice how you are coping and dealing with it.
I remember telling my sister. She’s a dentist (so quite medical) and very much like me – matter of fact, let’s just get on with it and deal with it etc. Telling her was therefore easy and I feel lucky for this because she was able to tell my mum. She was also able to tell her that I was ‘fine’. Had I told my mum, she would not have listened ‘properly’ and all she would have been focussing on would be the worst. This was actually the case when I spoke to her – she just couldn’t talk to me as she was so upset. I guess the shock finding out that her eldest daughter had cancer was a shock as well. Talking the next day was fine…. no longer a shock, she could tell that I was OK and that I was positive.
My brother was the same. Despite him being the youngest, he’s now the ‘man of the family’ since we lost our dad 5 years ago (to lung cancer – he didn’t smoke). I guess he feels as though he’s the protector now.
I’ve been told that my positivity and energy to get through this has helped those people close to me get through it too! I’ve also been told that this attitude has also been quite difficult for others to handle. People deal with things differently. Some people worry and see more negatives than positives so they struggle to see why I have been so positive. They feel guilty because of this, after all why should they have difficulties when it’s not them directly going through it? To me, this isn’t a valid point. Like I said earlier, it’s easier to go through it directly than to see someone you love and care for go through it, be uncomfortable, be in pain (although I wasn’t), struggle etc.
I’m normally one for putting things on Facebook and/or Instagram but I’ve ‘gone underground’ lately. Again, how do you announce something like this on social media? It’s not like a birthday or a celebration….. I’m not after hundreds of comments and get well wishes. There are some things that I believe should be kept away from social media platforms like Facebook and Instagram (although I may change my mind in the future). This was the case when my dad died. I said nothing. Some people do and that’s absolutely fine. Like I said, people deal with things differently and if it helps them to cope, then ‘go for it’ I say!
So, back to my friend…. she had a feeling that something ‘was out of kilter’ and decided to send a text. I replied with my story…. naturally, she was shocked and surprised but realised after speaking with me that I was positive and wasn’t going to let it beat me! After knowing me for over 43 years (scary!), she knows me very well.
I’m looking forward to her visiting tomorrow – despite not seeing each other that often, We always seem to ‘slot’ right back in. I can guarantee there’ll be lots of straight talking, giggles and laughs……… that’s what good friends are all about! I am super lucky!
21st March 2019 – More flowers! My lovely school friend has sent me some lovely spring flowers…. some of my others are still going but they are on their last legs so these are a very welcome arrival. She’s also coming round tomorrow and bringing lunch.
Spring is in the air
I’ve also started reading up on Tamoxifen. I am conscious of 2 main side effects 1) putting on weight and 2) hair thinning. I guess we’ll just have to see how it goes.
Prior to all of this, I did exercise every day (weights, cardio, yoga)…. I am already feeling the effects of not having done anything since my lymph node op 6 weeks ago. My tone, especially around my tummy is reducing and it’s bothering me. As I have been so restricted over the last few weeks and obviously haven’t been able to do any exercise, I have been already watching what I am eating. Thankfully I haven’t put in any weight.
In terms of my hair, I have thin hair anyway and also not much of it.
23rd March 2019 – Baby Steps I think I’ve mentioned before that my other blog is all about my life and in particular, the fact that we love walking and hiking. We’ve done several long distance walks including walking the breadth of England (Wainwright’s Coast to Coast) so getting out for a little walk was very important to me.
We didn’t go very far – just around what we call the ‘small’ block. It’s only around the estate where where we live so not overly exciting in terms of views but it’s still 1.5 miles – it’s 1.5 miles more than I have done in a long while. It felt OK although we weren’t going very fast.
24th March 2019 – Double Up After yesterday’s 1.5 mile walk, we did almost 3 today – I feel great.
I am doing my exercises to get my arm working properly again but and although I am making progress, it seems to be slow. I am impatient although having done yoga for over 20 years has made slightly more ‘relaxed’ about things….. I will get there….. eventually!
25th March 2019– A Busy Day We had an early start at the doctors for the removal of my coil…… not the most pleasant experience but hey, needs must!
I also picked up my prescription for my tablets….. here’s to the start of the long journey!
It’s been so gorgeous outside today – a proper spring day so we donned our walking gear and went for a 4.5 mile walk. We’re so lucky to live on the edge of the Peak District and we can be away on the hills from our doorstep in around 15-20 minutes. I never tire of the views – the clouds and light always give a different view. I’ve also been looking forward to getting our and about to see the spring lambs jumping and playing in the fields. this walk didn’t disappoint as there were loads of them. The lambing season always reminds me of ‘new starts’ and of ‘carefree times’ – I am so looking forward to recovering and enjoying the spring and summer.
My back yard
26th March 2019 – Start of my Tamoxifen Journey I’ve started on my Tamoxifen today…. fingers crossed for a smooth ride! I’ve decided to take it when I get up in a morning. I’ve been told to take it at the same time each day – I’m a ‘literal’ thinking person so always focus on the exact meaning of words so when someone tells me that I need to take a tablet at the same time each day, this does of course mean at 7.03am each day! Whilst I am aware of this, it’s not actually going to happen and I rationalise the process by thinking it’s not going to make any difference if I take it 1 or even 2 hours either side!
Despite being an accountant, I’m also a ‘wordy person’ – I have an eye for spelling and grammatical errors (yikes – should I have really mentioned this on my blog….. what if I have made a mistake?? Typing error – obviously!). I took my english language O’Level 2 years early and got a good grade and this is despite not reading. I failed my english literature O’Level because I never read the books – I’ve always preferred to be doing something ‘active’ as opposed to sitting in a chair and reading. I guess this is also down to being a literal thinker – I hate fiction!
I definitely interpret things literally so for example, if someone said to me ‘I’m thirsty’, I would just think it was a simple statement about thirst. On the other side of the spectrum, the inferential person will infer meaning into the statement and make an assumption about the meaning behind what is said sou would probably offer the person something to drink. I am very black and white which is probably why this journey has been very matter of fact! I can’t change it. I can’t do anything about it. I just need to get on with it and deal with it.
28th March 2019 I popped into Tesco to get my mum some flowers and just thought I’d have a nosey around the clothes section.
I wasn’t particularly after anything and definitely not new underwear (bras) but I did notice that they did have some that were padded and non-wired and they did have my size. We don’t have a huge selection of stores in town (Tesco and Next) and as I’m still not mobile in terms of driving, I cannot venture out to more appropriate stores. I therefore decided to try them on – surprisingly they fitted quite nicely. They don’t feel as nice as my usual underwired bras but at least they were comfortable and more importantly, I’d be able to wear all my normal clothes again without the chunky sports bra showing through.
To top it all, they were an absolute bargain – a pack of two (one white and one black) for £10! They would certainly do for an interim measure.
We visit the consultant at the Alex Hospital on the Monday after a heavy weekend of research.
I’ve read so many blogs and websites to understand the options and risks and now feel as though I have enough information to make the right decision for myself.
Whilst I hate reading books, I like to understand what I’m letting myself in for. I guess it’s because I like to know everything and I like to be prepared. I’m one of those people who will read a set of instructions before unpacking the box. It’s just me. It always has been and always will be.
I once did a management development course called Courageous Success. It was different to other courses because it drew out the things that drive you, the things that really mean a lot to you. Each set of drivers is unique to the individual even down to the description. One of mine was ‘Walk on the Pavement’. This refers to me liking things to be done correctly and making sure that everything has been taken into account. Grass should not be walked over if there is a pavement. I guess it’s about following rules and doing the right thing. This was instilled in my siblings and I when we were young but is also probably down to the fact that I’m accountant – I have to ensure that accounting policies and regulations are followed.
Anyway, back to the ‘main story’…. I guess I only had 2 options but I wanted as much information as possible. I also asked my sister (a dentist so more ‘medical’ orientated) who has a close friend who is a maxillofacial surgeon – she’s a good one to get some impartial medical advice.
After much reading and looking at several photo’s, I decided to go with the implant and LD flap reconstruction. Whilst the consultant was impartial in terms of which type of implant to have, he did say I would be a good candidate given my current breast shape and size. Not long after I had made this decision, my sister forwarded on a message from her surgeon friend…..
“different surgeons have different preferences but this is from ****….Re flap v implant. Cosmetically better result with flap – drawbacks are much bigger op – complications much more serious if they occur- and if they do happen may delay adjuvant therapy. He says complications with implants are much easier to fix – and for that reason he prefers doing reconstruction with prosthesis . This is the text from breast surgeon who operated on ‘famous person’s’ wife. Very good surgeon, hope it is helpful x”
OK, so this could have thrown a spanner in the works. I knew there were additional risks but there are risks with any surgery. Besides, negative thinking isn’t in my make-up. I would be fine (perhaps this is a little naive but… hey!). I was confident in my consultant who was a specialist in this type of surgery so I decided to continue on my chosen path.
The meeting with the consultant was therefore quick as all I had to tell him was the option that I had chosen. We also agreed on a date for my sentinel node biopsy operation which would determine whether the cancer had spread (the sentinel nodes are the first few lymph nodes into which a tumour drains). Whilst the ultrasounds that I had done hadn’t shown anything, it was obviously best to get them checked out properly.
I’d finished the first part of my work contract the day before so was travelling to the hospital from home. Tim therefore joined me for the first time.
The consultant explained that the biopsy had shown cancer in 2 places…. if you think of 3 dots in a row, the 2 outer ones had shown positive but the one in the centre wasn’t. However, because the distance between the 2 outer points was more than a certain distance, it was absolutely definite that I would need a mastectomy. I’d already spoken with the consultant about having an immediate reconstruction. This gives a better result than a delayed reconstruction because the skin is preserved as much as possible. This is known as a skin-sparing mastectomy. It basically means that all the breast tissue and glands are removed but the skin is left mostly intact so that the reconstructed breast looks more natural.
The consultant then went on to show us several pictures of ladies with the varying options 1) straight mastectomy and no rebuild 2) saline implant rebuild 3) flap rebuild and implant. I have to say that I was pleasantly surprised at how good options 2 and 3 looked. Obviously it’s not something you ordinarily come across but it most instances, you could “barely tell” that such radical surgery had taken place. I think Tim was also pleasantly surprised although he was fairly quiet as there was an awful lot to take in and I think the situation was “becoming very real”.
I knew that for me, 1 wasn’t an option. Whatever, because of the size of my boobs (DD), I would need an implant. The consultant spoke about saving the nipple but I was sure that if there was a chance of the cancer returning, I really didn’t want this. I was more than happy for the nipple to go. He’d instead replace the areola with some skin from my back. He showed us some photos of tattoo’d nipples which looked really good. I’m not sure about this. At this moment in time I don’t feel as though I need or want to have this done. It’s aesthetic after all. Tim wants me to have it done purely because I’ve always said that I would never have a tattoo (he’s joking of course – he’ll support me whatever). Nipple reconstruction is also an option at a later date (usually 3-4 months later) but this is something that I know I won’t consider. It’s just not important to me.
After looking at the photo’s, the consultant said that I would be a good candidate for the flap surgery (it gives a better, more natural look). There are different options on this flap surgery – stomach or back (LD). He then assessed the amount of tummy fat that I had to see if I was suitable for the TRAM flap option……. I didn’t have enough! I laughed and shouted over to Tim asking him if he had heard that I didn’t have enough stomach fat for this option! Every cloud…… clearly, all those ab exercises and core strengthening yoga poses have been paying off. He then assessed me back and said that he could do the LD flap procedure with an implant.
It really was a minefield as the consultant showed us the pictures and rattled off the various statistics of risks etc. Now, I’m a numbers person yet these percentages did not sink in. It was so over-whelming. There was so much to think about and I didn’t feel as though I had enough information to be able to make a decision there and then. The consultant said that I didn’t need to make a decision there and then and that I could have the weekend to think about it. We could meet again on Monday.
What I did know though was that I was very impressed with the end results of the options. I’d obviously not seen reconstructed breasts before so I was really pleasantly surprised and pleased at just how good they looked.
The Options
Back (latissimus dorsi) flap. This surgical technique takes skin, fat and muscle from your upper back, tunneling it under your skin to your chest. Because the amount of skin and other tissue is generally less than in a TRAM flap surgery, this approach may be used for small and medium-sized breasts or for creating a pocket for a breast implant. Although uncommon, some women experience muscle weakness in the back, shoulder or arm after this surgery. The LD flap is often used along with a breast implant and can provide a more natural-looking breast than just an implant alone.
TRAM (transverse rectus abdominis muscle) flap. This procedure uses tissue and muscle from the tummy area. The skin, fat, blood vessels and at least one abdominal muscle are moved from the tummy to the chest. Due to the nature of this procedure, it can also result in a “tummy tuck” but it can also decrease the strength in your tummy muscles. A TRAM flap may however not be possible in women who are very thin or who have had abdominal tissue removed before. Sometimes, an implant can be used but some women have enough tissue in this area to shape the breast so that an implant isn’t needed.
DIEP flap. The DIEP (deep inferior epigastric perforator) flap uses fat and skin from the same area as the TRAM flap but does not use the muscle to form the breast shape. Tissue is completely cut from the tummy and moved to the chest. As no muscle is taken, there is less risk of a bulge.
Gluteal free flap (GAP flap). This type of reconstruction uses tissue from the buttocks to create the breast shape. This method is similar to the TRAM flap except no muscle is taken. The skin, fate and blood vessels are taken from the buttocks and moved to the chest.
There are also a couple of other options (Inner thigh or TUG flap and fat grafting) but these are newer and weren’t discussed with me.
Having agreed to catch up again on the Monday, I knew that the weekend would be spent reading up on the various procedures so that I had all the facts and information that would allow me to make the right decision for myself. I wanted to know and understand everything – all the pro’s and all the cons. Thankfully, there’s an awful lot of information available so I knew that whatever I decided, I would be going into it fully aware and prepared.
Definitive Results Day – 25th January 2019 Today would be the day that we would find out the exact course of treatment and exactly what we were dealing with – lumpectomy or mastectomy.
I went on my own as I was working locally and there was no point in Tim travelling 20 miles to join me. The consultant confirmed that the MRI had shown a tumour size such that I needed a mastectomy. Fine. If that is what was needed then so be it. I actually felt quite relieved that it was the ‘full hit’ as I felt that this would give me the better chance of it not returning.
It’s weird because I had heard about people undergoing this type of surgery and I wondered what it must feel like to be told such news. I took the news as very matter of fact. I can’t actually describe my feelings at receiving the confirmed diagnosis because I genuinely can’t remember having any – I wasn’t angry, I wasn’t sad, I wasn’t stressed. It was ‘one of those things’ and I took it in my stride. After all, there was absolutely nothing that I could do about it. I’m hugely pragmatic and I don’t believe in wasting energy worrying. I did wonder if I was being naïve, choosing to ignore it and brushing it under the carpet but it was real…..very real. I was ‘going through’ this experience. There was definitely no running away from it. As far as I was concerned, it was another ‘task/event/issue’ that needed sorting and dealing with……. so, let’s just do that!
Tim on the other hand, was very quiet when I told him. I knew that this would be tough for him. I knew that he would need more of my energy than I would.
We were supposed to be going to a friend’s 50th birthday party that evening but, although I would have been OK, Tim didn’t fancy it. I therefore texted another friend, told her and asked if she would mind making up an excuse? The last thing we wanted was to spoil someone’s birthday celebrations.
OhBoob! 