Another interlude - have a slice of cake!
Everything that happens to you in this life costs money; marriage, education, pregnancy, and cancer! In Great Britain we are extremely lucky to have the NHS so we don't have to worry about paying for treatment, or medical insurance, but there are still some essentials you will need to buy - or maybe someone may buy you as a gift! but what is essential? what is good? what is a waste of time & money?. As I've said before, this is based on my experience alone therefore I welcome any comments or suggestions to add, from other people who have travelled this journey.
** Small pillows: Absolutely essential! My daughter bought me a heart shaped beanbag pillow which has turned out to be the most useful gift of all, it fits perfectly under my armpit to support my arm when sitting or lying down, it can be molded to sit between my breasts when I lie on my side, and because it is lightweight it doesn't make me too hot. The pillow is also a must have, because for the first couple of weeks you need it to sit between your chest and the seatbelt when travelling in a car. You also need to make sure you have several pillows to prop you up and support you in bed.
** Small bag(s) with shoulder strap for drains: I found a bag much more manageable than the bra pockets, I was lucky enough to have a little bag that my Mum 'donated' (I kind of borrowed it on a permanent basis!), but I've seen a lot of women use Drain Dolly bags, these are pretty, hand made bags sold by a BC warrior from www.draindollies.co.uk , a snip at £6.00 each (10% of profit goes to Genesis - preventing breast cancer).
** Button up clothes: Essential! pyjamas or nightdresses and tops - you'll need these for about 3 weeks, the buttons make it easier to thread your drain tubes through, and saves your tops being lifted up at the side. Also its difficult to get clothes over your head when mobility is poor.
** Bra's: Now I think it depends upon which trust you are being treated at, so ask your Breast Care Specialist Nurse before surgery if they provide you with a mastectomy bra for free. I didn't know this was available and so spent out beforehand and it proved to be a waste of money. If you want to buy bras, or the trust doesn't provide the bra, then I would recommend using a zip up fronted sports bra. It needs to be very supportive but not too tight, no underwires, and non back fastening (you won't be able to reach) - but I would recommend buying a size bigger than you normally wear to allow for swelling (I didn't, and regretted it as I couldn't get them on for a month). A lot of the sites I looked at recommended M&S Sports bras, which I bought - now these are £25 each (they do give a donation to breast cancer research), but when you buy 2 and not use them - that's not funny! They are very nice, and good quality - however, I'm sure there would be cheaper options out there to be found.
** Poncho or wrap around blanket: Obviously depending on the time of year - I had my op in November, and there was no way I was going to be able to get a coat on, so this was a clever way to cover up and stay warm.
** Dry shampoo: depending on how often you usually wash your hair, and the support on offer to do the clingfilm trick - dry shampoo can buy you time.
** Box set, Books, magazines: You'll be spending a lot of time sitting and not moving, so you need stuff to entertain yourself with (between physio sessions!). I managed all 6 series of 'Downton Abbey' and all of 'The Crown' from Netflix.
www.breastcancercare.org.uk
www.macmillan.org.uk
www.cancerresearchuk.org
A little interlude from the diary pages, so take a little breather!
So, as I said previously, there are many things that you don't expect when you have a mastectomy, the experts don't tell you because they just have so much important stuff they have to tell you, these things are lower down on the priority list, and you don't ask because you don't know the things to ask!! ** Remember I'm a midwife, therefore I don't know the meaning of the word taboo! that's your warning!**
These are things that I discovered on my journey, but as my journey is MINE, I welcome any comments, tips or advice that other people found on their own personal journey. a little reminder of the surgery I had: A skin sparing, nipple sparing mastectomy of the right breast, with lymph node clearance and reconstruction with silicone implant and Braxon Mesh! ..... and breathe!
** Going to the toilet: Sorry, but its a natural bodily process that we all need to do, and it's an issue!! ..... so when you go to the toilet, you need to have the toilet paper ready in your hand before you sit down, position yourself and sit directly down - this is to avoid any twists, because twisting in any way feels like you have been shot with a flaming arrow through the chest and out of your back! and then when you've finished doing the business, you need to wipe!! here, I have to say thank goodness I had a good side, I'm not sure how women who have a double mastectomy do this - reaching around to wipe your bum hurts (the twist!), even with a good side - I'm thinking of perhaps implementing a bendy selfie stick with tissue on the end! - the only tip I can give on this one, is to take a deep breath and go for it!! then, when you've recovered, push yourself directly upwards to stand - without twisting! - Oh, and if you take your pants and trousers down only to the knees, you stand a better chance of being able to pull them up yourself!
** Showering: As discussed on the previous page, you can't shower because of dressings and drains. Dry shampoo and a flannel down at the sink can keep you going for a couple of days, but if you want any chance of keeping your loved ones close, you really need to get the clingfilm out. You need either a good partner, a best friend, a daughter, a Mum or anybody available that you can bribe to help with this. Get your dance partner to wrap you really well in clingfilm, run a shallow bath and sit in this to wash your bottom half, and get the dance partner to gently wash your hair, doing their best not to soak your clingfilm corset. Be careful getting in and out, it's slippery.
** Dressing: You are not going to be able to dress yourself for at least a week! knickers, trousers, TED stockings and socks are the real problems, so employ your dance partner from above to help with these - reaching downwards with your arm brings on the flaming arrow, and bending down makes it feel like gravity is trying pull your boob off your chest! Also, you need to have button up tops, firstly to thread your drain tubes through and also because you won't be able to put your arm up to get anything over your head for a few weeks.
** Numbness & hypersensitivity: Any major surgery involving the removal of tissue is obviously going to cause some nerve damage. Some of this will repair itself over time, some will not - and it's another life challenge to learn to accept and live with. Immediately after surgery, I had no feeling at all in my breast, armpit and tricep area down to about an inch from my elbow. About 2 weeks after surgery the edges of these areas became hypersensitive, even my clothes brushing against them hurt - like having splinters in my skin, but this slowly got better. Then, randomly I had a very hypersensitive area in my back - parallel to my boob if that makes sense, just a straight line, as if that had been an area inside that had been cut, but that got better after about a week - its just all those nerves knitting back together. Now, 8 weeks on - I have no feeling in Barbie Boob or armpit at all and the tricep area is numb for about 4 inches. The nipple responds as normal to touch, cold etc. - but the 'telephone line' to passion central has been disconnected (much to Party Boobs delight!!). I'm assuming now that this is how it will stay, but that's fine, it's a small price to pay for life :)
** Cording: Cording occurs when you've had lymph node clearance, it is a thick rope like structure (I'm assuming a ligament) that runs along the inside of your arm preventing straightening and arm movement. I was surprised to have pain down to my wrist from cording, but when your drains have been removed and you can move on to stage 2 of the physiotherapy, as long as you are vigilant with the physio, it goes within a couple of weeks. I set alarms on my phone to do physio 3 times a day, it hurts! but you need to do it, I cant stress how important it is!
** Support Network: There is no way I could have ever done this on my own, you need a support network, not just for the practicals of dressing and washing, but for cooking, cleaning, school runs, shopping, chauffeur services, emotional support and company. For me, being stuck in the house unable to drive anywhere was a massive challenge. As I'm a runner, I exercise a lot when I'm stressed as it keeps my mental health in check - and in the weeks after surgery, I was not allowed to do any exercise at all other than my physiotherapy. That was tough on the brain. I needed a flow of different visitors to keep my brain stimulated and to get me out of the house.
** Being sensitive to others, and growing a thick skin: A tricky one for us females! Some people don't know what to say to you, they are frightened of saying the wrong thing, or maybe just plain frightened about the whole situation - so they stay away! I have felt hurt by this when it has been people who I really thought would be in the front line of fire with me - but as I calmed down and rational thinking takes over, I have realised it is fear on their part. I've taken two strategies with this depending on the personality of the individual - some, I leave alone; they'll come when they are ready and I will have arms open. Others - like one of my cousins, I messaged directly and called him a flaming idiot for being embarrassed about my boob. It broke the ice, we laughed and had a really long chat about my boob (weird!). Some people just say inappropriate things: on the day of diagnosis - "have you got life insurance?" (thanks for the optimism!), most people have an opinion - what you have to do is........ (what you actually have to do is, deal with this massive thing in any way you can!), and some people question and undermine the professionals; 3 weeks post op; "are you sure they've got it right? you look so well? they get things wrong all the time you know" (well I bloody hope they're right now I'm one boob down!) - its all fear and ignorance, and you just have to let it flow over your head and laugh about it, otherwise you'll spend all your time crying and feeling offended, and thats not going to help anyone!
** Lying in bed next to your partner: No-one is getting any sleep in this situation, firstly for the first few nights you are going to be propped up on (84 according to my 7yr old) pillows and then for the next few weeks you'll be putting pillows in various places to defy gravity from dragging your breast out of your skin or through your sternum, unable to put your upper arm down, so a pillow is required there too (I use a little heart shaped bean bag that my daughter bought for me - perfect), or to allow you to lie on the affected side for a few minutes. Then your partner is going to lie there, too terrified to move in case he/she knocks you and hurts you, if they do move in for a cuddle and manage to get past the pillows, they then have to negotiate the hypersensitive areas, drain tubes etc. Frankly - accept that any cuddling or physical contact in the bed situation has to planned like a military mission! nothing spontaneous is happening at this time!
** Drains in bed: Now this is where my Mr Creative earned his genius stripes! So, I get into bed on night 1, and realise I have 2 drain bottles to put somewhere, this need to be where they wont get tangled, crushed, pulled or fall of the bed! So Nic came up with ....... a coathanger!! he attached a bottle to each arm of the coathanger and hung it on the bedframe. Simple, yet genius! when I got up in the night for a wee, after the military operation of getting out of bed, I took my coathanger and hung it on the sink while I did the toilet manoeuvres. when I had my clingfilm bath, I hung my coathanger on the side of the bath - it was perfect!
** Sex! I warned you - no taboos!: Sorry to my older children who might read this, you might want to close your eyes and put your fingers in your ears for this bit!
Things are obviously going to change in this department, but sex shouldn't be serious, it should be fun - and you have to laugh through this, because wow! things are going to get tricky! The above issues of bedtime showed you that anything in the bed is going to be a military operation, pillows, drains, tubes, painful areas - it all needs negotiating, and frankly - in the early days it's your partner that will have to do the work! as drains get removed and mobility gets easier, you then have to re-learn whats working for your body (and for some there will be some major body confidence issues), and that includes positions (I'm NOT going to get graphic here, dont panic!), but your arm/arms will have lost all strength, and will not stretch like they did before. What I'm trying to say is just get on with it! have fun, make it work, laugh your way through it - and remember, YOU ARE A BEAUTIFUL WARRIOR PRINCESS! MORE IMPORTANTLY, YOU ARE NOT A PAIR OF BOOBS - YOU ARE A WOMAN!
I'll update this whenever I think of anything new, but in the meantime please, please ask away and share your experiences xx
www.breastcancercare.org.uk
www.macmillan.org.uk
www.cancerresearchuk.org
***Warning - this page contains images that some people may not want to see. They're not gruesome, but maybe not everyone's cup of tea! I feel they are important to include them as they are important to the story and to answer any possible questions.***
Mastectomy day - I can't tell you too much about the surgery as thankfully I was asleep! I had a 'skin sparing, nipple sparing mastectomy with lymph node clearance and reconstruction with implant and Braxon Mesh' - just a short title! I think the surgery took around 4 hours, and afterwards I pretty much slept, so I'll skip to the following day.
The first thing I did was look down my top - it was AMAZING!! where my 44 yr old, slightly drooped, 34B, cancer infused Evil Twin used to be was now a pert, round, rock with a nipple! I was beyond impressed, I was ecstatic - the Evil Twin had been replaced by 'The Barbie Boob'. I couldn't see the scar as I had dressings covering the incision wound, and I had the 2 drains which I had been warned about. I felt OK, until I reached out with my right arm to pick up my glass of water ...... bloody hell! a spear of fire shot me through my chest! It took a few attempts to get it, I realised that I had to kind of move my whole body and not twist. Luckily the nurse came round and offered me some paracetamol which I eagerly accepted - and paracetamol was enough, it is a little miracle drug. soon after this I was helped out of bed and walked with my drip stand (just having some fluids, nothing scary) and drains to the toilet. By 10am I was out of bed, washed and into pyjamas, sitting in the chair and ready to gently face the world.
Around this time I received 2 surprise, out of hours, rule breaking visitors - 2 of my closest friends. Because it was out of hours, I took a little walk and sat in the corridor with them. So there we were, the 3 amigos, sitting in a draughty corridor - all looking down my top admiring the Barbie boob (did anyone walk past? I cant remember, but you can imagine the image they faced!!). Incidentally the Party Boob was looking very sorry for itself, left out and seeking the attention that Barbie was getting.
At my own request, because I felt well and had a great support network at home, and know how to deal with drains and dressings, I went home early that afternoon. I had been fitted with a special bra by one of the breast care specialist nurses, the bra had velcro pockets to stash my drains - but made me look 9 months pregnant (I swapped these pockets for a shoulder bag when I got home as I found that easier to carry around - I suppose I could use the pockets for carrying my water bottles, pain relief, or shoplifting.....)
For the first couple of days I took regular paracetamol and Ibuprofen, that was all I needed. mobility improved and I set alarms on my phone to remind me to do the regular physiotherapy that was advised to improve arm and shoulder movement. It was funny to think that a couple of days before I was lifting weights in the gym, now I had to work up to putting my hand behind my head. Thank goodness I'd only had one side done, I'm not sure how women cope when they've had a double mastectomy. But the pain was manageable, and movement soon improved.
There are several things that are difficult after a mastecotomy that you don't realise - so I shall add an additional page for these, but one of them was showering and washing my hair! I was not allowed to shower due to the dressings and drains, so my beloved fiance ran a shallow bath, wrapped me up in clingfilm, helped me into the bath so I could sit in the shallow warm water, and washed my hair with the shower - the kindest, yet funniest thing he had done up to this point.
The first drain- the axilla (armpit) came out after 1 week, the drain from the breast came out after 2 weeks. I got used to carrying them around, it wasn't as bad as I first thought it would be - however, I scared the living daylights out of the woman from across the street when she popped over to collect a parcel! I had been woken from a nap and answered the door forgetting about the drain tubes hanging out of my shirt filled with what would have looked like blood and into a bag, a bit like a Dr Who character - she looked at them, went white and hurried off! a couple of days later I took in another parcel for her ..... she didn't come to collect it! I had to take it to her and she opened the window instead of the door!!!!!
Two weeks later, Dr Mumbles took off the dressings - the scar (considering that I had seen a lot of images of varying degrees) was amazing! the armpit was a bit lumpy but who needs pretty armpits! Then Miss Cyclone came in to check her handy work and asked if another patient who was facing the same operation but was terrified could come and have a look, to which I readily agreed - I'm more than happy to help anybody in this battle. A sobbing woman came in, and I just hugged her, I wanted to cry myself she was in so much emotional pain. she looked at Barbie Boob, the scar and felt it - it had started to soften by then, it was no longer a rock. She felt better, reassured - and I knew then, that I needed to use my experience to help others going through the same - which is why I decided to include my pictures.
This picture was taken today - 8 weeks post surgery, the Barbie boob has now returned to the correct size as all the swelling has gone down and is very soft. I can feel the edges of the implant but it's not sore. I can lie on my left side comfortably, the right side for short periods. The scar will fade to a whiter colour, and the armpit is no longer lumpy (forgive the stubble, shaving is still a trick I'm mastering - the armpit is completely numb so I never know if I'm just shaving air!). Not bad for a Princess Warrior wound if I do say so myself - I covered the nipple to stop it looking like porn! :)
www.breastcancercare.org.uk
www.macmillan.org.uk
www.cancerresearchuk.org
And so, there was another week to wait for the full diagnosis, dates for further tests and a plan. This was the longest week as I had exhausted all of my information gathering, and had the task of telling people. At the same time as all this was going on, my Mother-in-law was an in-patient battling Ovarian Cancer and not in a good place, so Nic and I decided not to tell her anything until it was absolutely necessary. We also decided not to tell our 7yr old for a variety of reasons - I will discuss this on another page, as children are just incredible creatures that we underestimate constantly! But there were our other children to consider (ages range from 22 -17), my Mum and my close friends and colleagues. I knew that people would be supportive and kind, but nothing in the world could have prepared me for what happened!! The Army Assembled!!! As word leaked out I received message after message, cards, letters, calls you name it! I was overwhelmed. You go through life making little impressions on peoples lives, but you don't realise what a massive part of life you are to them until the proverbial hits the fan. My faith in human nature has been filled to the brim. One thing I am certain of, no-one needs to face cancer alone, just speak and you will be heard, by many.
By the end of the week I had come out of 'manic mode' and entered 'calm as long as I get my own way mode'.
The next appointment came around and Dr Mumbles joined Nic and I in the consultation room, he mumbled that my cancer was ER positive (meaning it was being fed by oestrogen), then he looked at my file, mumbled something else and left - we were very confused!! the next thing we knew Nurse Lovely came in followed by Dr Mumbles and the Consultant - like a whirlwind! - now I can only assume that she already knew that I was annoying and wanted to be 'actively involved in my care plan' and that I didn't want surgery in May due to the wedding, but she was amazing! she was just what I needed - Lovely, smiley, kind, and straight to the point. Miss Cyclone examined me at super-speed, and then said "right, I've seen the scans, I want to do the surgery before chemotherapy and as you are small breasted (excuse me! more than a handful is a waste, thank you!!) and don't have too much body fat (winner!), I propose we perform a new technique - you have to have a full mastectomy on the right breast, so I'm going to perform a skin sparing, nipple sparing mastectomy and reconstruction, with lymph node clearance. Get dressed and come through and we'll pick a date" and that was that!
When I went into the next room, Miss Cyclone showed me the silicone implant and Braxon mesh that was going to be used to reconstruct my breast, and explained very clearly what the surgery would entail. I am fully aware from my research that reconstruction is not cosmetic surgery, it is 'doing the best with what you've got left', but Miss Cyclone filled me with confidence. She explained that there is a risk of rejection, that the nipple is not guaranteed but she would try, and that I would have 2 drains in situ following the operation. Then she gave me a date - the next week!! I needed to have medical illustration photographs, a bone scan and a CT scan, another appointment with Miss Cyclone to discuss the MDT meeting (the knights around the round table), a pre-op assessment and of course I needed to get waxed before then! This was going to be one busy week!
I had the photographs taken the same day, now let me tell you Katie Price does not need to worry that I might take her place in any glamour shots! By this point I've had my boobs out all over the hospital, but the photographers studio was the worst place ever! firstly - I had to request an alternative photographer, as the one on duty was someone I work a lot with, and he is not getting a peek and the goods! secondly - the replacement was a young fitty - why couldn't they send in a random overweight middle aged someone? thirdly - no gown or sheet to cover my modesty as I took the 10 steps from door to marked point, I felt so exposed and vulnerable in my leggings and boots, and finally - I didn't know weather to smile, pout or cry! maybe I should have had some props? a riding crop, hat, chair? The nervous sweating was also a very attractive addition to the party! - like I said, glamour modelling is not my forte! Thankfully although it felt like it took ages, it took minutes and young fitty was very respectful and kind.
The Bone scan was first - this was a tough one, because I was injected with a radioactive dye and couldn't hug or sit next to my little one until the following day. Explaining that to a 7 year old was awful. but the next morning we had extra cuddles before school to make up for it. The scan itself wasn't too bad, not that claustrophobic and didn't take too long.
The next appointment with Miss Cyclone was a quick one - as yet again she was a whirlwind, she confirmed that all of the knights were happy with her plan and took consent for the procedure.
I saw my beauty therapist friend and had my legs and bikini line waxed while she cried because I had breast cancer!! I did have to tell her to get a grip before she started stripping my legs of all the flesh!! (I'm sure she was upset because of what I would be going through, not because of the loss of future business - waxing is not recommended while having chemo).
The pre-op and CT scan were on the day before the op - The CT scan was fine, not too claustrophobic as I expected, but the barium drink you have to guzzle beforehand is a real 'treat'!
Miss Cyclone came to tell me just before the op that the CT scan was clear - my cancer had not spread - winner again!!
www.breastcancercare.org.uk
www.macmillan.org.uk
www.cancerresearchuk.org
