Week 27: Thursday 25 - Wednesday 31 May 2017
Huge momentous week this week... first off, people may not want to read the in depth stuff on my operations... so I will mark that section beginning with 🤢🤢🤢 and ending it with ✅✅✅.
As mum and dad had stayed over the day of my cancelled chemo, we all went out on the Thursday to Cramond where we had ice cream in the sun (with factor 50 and floppy hat on!)... we had planned to have lunch there too but unfortunately the kitchen was closed that day! (I was feeling like a bloody jinx by this pint btw!)
However not to be deterred, we then went out to South Queensferry for a light lunch, and then home for me to have a wee rest... still have to appreciate I am not wonder woman... 😜.
Dinner that night was a lovely BBQ in the garden and I even managed a wee cider to join in with the birthday celebrations!
Have to admit though, whilst everyone was basking in the summer heat... it actually just made me miserable... not to be out of kilter with everyone else, but already experiencing hot flushes, sweating and swearing permanently, the extra heat just exacerbated my fatigue symptoms, but then it was too hot to sleep, and with all the sweating and drinking water to combat everything, there were a lot more trips to the toilet to be had too.... 😱.
Anyway... I appreciate I overshare, but then this is my diary / blog and I am still insistent on keeping a true record for me lol.
The Friday of this week, Dave was trying to lift my spirits by making sure I would get up and about... but this was definitely a day where I was knackered with the heat and could not be arsed with anything.... anyway, we went a drive to New Lanark - a wee lunch and ice cream, but trying to walk up a flight of stairs was just too tiring for me. I felt like an old age pensioner despite my bloody mindedness. I am going to make a terrible old person at this rate lol. And all I can say is thank feck we got parked right at the Main Street itself.... I would never have managed to walk from the visitors main car park up the top of the hill!!!
On another note though, once fully better I really want to do the guided tour there as it looks amazing 😀😀😀.
Saturday was time over at mum and dad's although I ended up sleeping a lot during the day and also overnight... this was definitely a down time weekend! Sunday dinner was down in Gala with my sister's family before going home. This is what I mean that it's good to spend time with different people and different locations... and I now have no shame curling up and sleeping in any free bed going lol 😀. But equally, me being away gave Dave a break away from his other caring and housework duties, and not having to be around me and my moods lol. He had a wee day to himself uptown too after working from home.
Monday was giving more blood for testing... went home with everything crossed, and basically slept again.
Tuesday was a HUGE day as I went to see the oncologist and breast nurse. They basically suggested I could have a reduced chemo dose given I have been so sick, but this would potentially mean a further session too... so I said my real preference was to take the final hit, if we could manage the side effects with more drugs. Which is amazing, as before all this kicked in, I hardly even took paracetamol!!!
Anyway he did agree that I could do that, and asked again about me taking part in research clinical trials. However my position has now slightly changed I feel. Having been so sick with chemo, I am really not sure I want to be sick again, voluntarily. I really do want to be able to help others, but now I feel I may be having a selfish moment.... hmm, am going to take some time to ponder and wonder.... I have to go back and see the oncologist in 5 weeks time to talk about everything in the cold light of day, but actually, now that I have been told my surgery may actually be imminent, it may all be a moot point anyway...
Ok... Squeamish point from here forward... 🤢🤢🤢
Also had quite a long chat with the breast nurse about impending surgery... as I am not getting radiotherapy, their preference would normally be to do surgery within 4 weeks of last chemo... however, as my surgery also going to need 2 plastic surgeons, it might take wee bit longer to coordinate diaries... but they def want to press full steam ahead asap - to the point where nurse was going to be speaking to surgery coordinator in advance of me seeing plastic surgeon on 19 June to see if I can get head start on waiting list 😄.
Nurse also suggested that I ask gynae surgeon if any possibility of them doing their surgery on same day, seeing as I will be on the operating table anyhow... that appeals to my neat and tidy mindset, but have to wait and see... will not get hopes up too much!
It was explained my surgery could be anything between 8 and 20 hours... (!), but good news is that Livingston is only hospital that does this surgery and the op I am getting is the 'gold standard' of operations.
Basically the breast surgeon will be removing everything out of my breast and removing the nipple, whilst the 2 plastic surgeons will be opening up stomach and preparing the veins for micro surgery... once they have scooped everything out, they will then take the tummy fat from below my belly button and then separate it in order to know how much they will have available to make my new boobs 😀. It's really great stuff actually as I want to be smaller and perkier, so all good... and most of my belly fat is below my belly button anyhow.
After they have cut me open, the surgeons then go off for a break in order to prepare them for the intense micro vascular surgery ahead and joining up of tiny vessels. I will never be left alone as the anaesthetist will be with me throughout, and I am guessing my wounds will not be left open to the work with my innards trailing out like some kind of horror film!
Mum and I had a conversation about them being able to go to the toilet when operating on me, but according to shows like Grey's Anatomy, I think some surgeons may just choose to use industrial strength incontinence pants 😱😱😱 lol .
Don't get me wrong... we were shown pictures... the scars across my belly will literally be hip to hip. But as I said to mum, it's not like I am suddenly going to be flaunting my new body by suddenly becoming a pole dancer, and they will be always be covered by my underwear lol. As for breast scars, they actually look to be fairly minimal... but again, it's not like I get them out in public anyhow lol.
Speaking to other people who have had this surgery have said that sometimes they get pubic hair growing out of their new boob... I can just imagine that conversation when I got to get my waxing done pmsl 😜😜😜. I just find the whole thing hilarious.
In giving me a free tummy tuck, they obviously have to pull my skin down, hence why I also need to have a new belly button created.... see.... still fascinating 😀.
There was also info on how the surgery will initially cause so much pain that they can't really describe or prepare me for it, but after initial 48hrs I will get steadily better. But I definitely think that I am better knowing this now, and also that I will be in the high dependency unit, rather than scaring anyone on the day.... does mean my posts that week may be minimal! 😄😄😄. They also said I will hate the world, not be compos mentis and I will be dead grumpy that first 48hrs so maybe best I don't have any visitors that first couple of days lol.
I was also told I will be in hospital for at LEAST a week, if there are absolutely no complications... however, being fully aware that if things do happen, then I may be in a bit longer, and they may even use leeches on me to ensure good blood flow through the new joined up veins...
She also pointed out that out of the 65 ops they do of these a year, there are a couple where things don't work out. And sometimes they may have to take patient back to surgery to remove the reconstruction. But they do absolutely everything to ensure all success, partly because of the investment the patient has put into it with pain and cancer... but also because the cost of these operations are astronomical!
So, some of the things they are going to do to me include keeping me falsely heated with heat blankets for the first 48hrs to keep veins open and blood flowing; I will be allowed ice chips and cool flannels... but no fans or circulating fresh air. 😭😭😭
I will be on a morphine pump that I can use without limit for first few days, and then they will basically try wean me down over the course of my stay in hospital.
And... they will also be doing a Doppler test of my breast every half hour to check there is no necrosis... hence the comment above about leeches!
(At this point I may actually organise a rota of willing visitors in order to ease burden on Dave and my parents... apart from anything else, I will thrive on seeing different people every day!! As long as I don't have 10 visitors at once, that will be grand 😉. And never fear.... I won't be showing my boobs off or talking too graphically to anyone lol...)
Have had some thoughts though.... like I am not sure if I need new bras to take in with me... I have no idea what size I will be! And because of surgery I can't use pull on ones, or front fastening ones, and I won't be able to do the ones up at the back.... but mum pointed out I can ask all this stuff at the pre-op appointment... and in all honesty, am guessing it will be lots of bandages for the first few days!
Also, advice on forums is to take front fastening pjs to allow all the poking and prodding to happen easily.... I also got told about the drains they have to put into the 2 wound sites. Basically I will have 4 milk bottle things attached to me to drain away excess fluids... this bit sounds minging, but thankfully it will all be contained during my hospital stay and they do all the needful with them... including giving me a back pack thing to put on so I can get up and wander freely from day 3 or 4 onwards! I am pretty sure this is all going to be wonderful additions to my photo montage I am collating lol. 😇
And... I have to expect a minimum of at least 3 months recovery - and probably longer, due to fact that depending on timing of operation, I will still have chemo effects raging through me. (I don't think people believe I will actually heed their advice, but I will not do anything to jeopardise my recovery... I am headstrong, not stupid lol!!!)
One of the things they have also said is that once discharged, I probably need someone to be with me permanently for 2 weeks as I literally won't be able to do anything for myself... so I have asked mum if she can come and stay with me... 😀. Nothing against Dave, but this is probably going to require all types of personal care, and also he needs to be able to escape to work and preserve his own sanity... and I have the benefits that my mum actually is a trained nurse 😀😀😀.
So... that's it in a nutshell... I asked lots of questions, feel really positive and prepared for whatever dates they are able to give me.
I already know I have to have another procedure 3 months after this operation (nipples lol), and 3 months after that I will get tattoos (again, nipples lol).... they also allow time for the new boobs to settle and then decide if they need topped up using liposuction from other parts of my body...
So - fascinating stuff. Perversely I am quite excited... but this is good head space to be in.
Anyway... next bit is not squeamish.... lol ✅✅✅
So... mum had basically stayed over Monday and Tuesday nights in order to be able to take me to early morning appointments, and Wednesday was final chemo day.... hurrah!!!!
Went in, and had a wee delay, because one of the anti sickness meds had to be in my system for an hour before chemo was infused. As a random thing, mum and I discovered the second floor dining room at the hospital this time... they sell breakfast 😀. And actually because it's far away, not many people go to it, so lovely and quiet too!
Chemo session went well, and I was so pleased no effects.... cannula site still bloody sore going in, and my entire arm is bruised like a peach... but all will be worth it, and it will settle down. The steroid tomato fat face is prevalent as normal, but I know the end is in sight 😀😀😀.
I was really pleased to be able to 'bin my bras'... given I am going to be going down in size, I had had a massive clear out of my wardrobes in the past week or so, so I have lots to take to charity but my bras can be donated to ladies abroad.... some of these bras were brand new and maybe had only been worn once... and at a cost of £50 each, giving 9 away made me realise how much I had spent.... thank goodness smaller boobs will mean cheaper bras lol 🤗.
Was also really pleased to be able to give a bag of goodies to the oncology staff... they really have seen me through so much.... and actually, maybe some of the charity things I could do, I will make them my fundraising beneficiaries.... my friends doing run for Cancer Research, my work family are doing fundraising for Breast Cancer Care and Bosom Buds, but I think I will do something personal for St. John's.
(Mum did point out though that I should really have chosen smaller pressies for the team... I had left her humphing the bag around all morning - oops!)
Anyway... after chemo, mum and I went to McDonalds, then I came home and slept.
It's really weird actually. I was completely hyper as it was my last session... but a few hours laters I was completely floored again.... ahhh, the nature of chemo lol.
So...this next week is seeing the gynaecologist today, niece's birthday meal tomorrow, hopefully seeing a few friends over the weekend (all in moderation of course!), and then.... trip to Cornwall on Tuesday. Mum already has my clothes to pack in her suitcase, and I will be packed up with drugs to allow me to go safely, so excited it's unbelievable.
Along the way am hoping to look at helping out a friend do some funding research for his social enterprise, speak to people at work to keep my hand in, and hopefully chasing down another friend who is due me money and is so far ducking giving me it back. The good thing about chemo rage is that it's a good time to tell people to stop taking the proverbial lol.
So.... a very fulsome update today... but genuinely I am feeling great about everything. I know I will still have some more wobbles... but that's normal... and there is always chocolate 😀.
I genuinely could not get through this without my amazing family and friends... I really count myself truly lucky and blessed. Timescales mean nothing to me... first and foremost me and my health come first. I can't wait to get out the other end of this and be a new woman... no idea what my head space and attitude will be, but it will still be with a 'can do' attitude, take no shit, and I want lots of fun and excitement. And more holidays lol.
So on that cheery note - thanks for sticking with me... definitely always a rollercoaster!
Xxx
