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
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