I rarely post on here, but pop in to see what’s going on every now & again.
I feel so lucky to still be here ( over 4 years after diagnosis). Like us all, it’s been a rollercoaster ride. Have a lot of support from family, friends & professionals who have helped make the ride smoother. Since July 2020 I take Niraparib everyday which is keeping my disease at bay.
I still get times when I feel overwhelmed with what I ( & my family) have been through. I think it’s harder for those close who are scared of losing you.
My body shape has completely changed which I still find difficult to accept. I was lucky to have had a flat stomach until my first op & have had to get used to all the extra lumps & bumps associated with abdominal surgery. I appear to be prone to adhesions ( which the fab Prof CF unravelled during my last op but mentioned they’re likely to return) .
I find many clothes uncomfortable ( I used to wear jeans most of the time) but recently ordered dungarees which I find so comfortable. So much so I own four pairs now & pretty much live in them. I try to pretty them up with a feminine blouse worn underneath. In summer it’s easier as dresses without tights can be worn. I do have some pull up jeans which I wear at times but they become uncomfortable as the day progresses.
Anyone else got any suggestions of clothes you find comfortable?
Thank you all for being on this group - it’s so full of love & support. Take good care of yourselves.
Love to each & every one of you xx
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Differentforgirls
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Hi. It’s good to hear from you. You sound quite positive. I too am happy to be surviving on Olaparib, now on it two years since first recurrence. I can’t help with clothes. I pretty much live in stretchy jeans or yoga pants or dresses in summer. Xx
Hello.. I am glad that niraparib is working for you and congratulations on your survivorship (is that a word?). I know what you mean about body shape changes and just appearance generally. I have to wear support garments on my legs, I am heavier than I have ever been…most of the time I am just happy to be here but occasionally it does get to me. I can’t wear jeans, so I am going for maxi dresses this summer to hide my legs and add a little elegance to my barrel shape! xx
So happy to hear how positive you are. They didn't have or didn't offer me niraparib but I'm still here despite that. I also hate my tummy. It's bigger one side than the other and although I've never been lucky enough to have a flat stomach it's worse now and dieting doesn't help. Before my op I said to the surgeon 'at least my tummy will go down when the damaged fatty tissue is removed' and she said ' no it will be worse'. I was so disappointed. (A bit vain, I know)
I wear loose elasticated waist casual/sport trousers and very long tops. I'm still size 12/14 depending on the makers but feel bloated most of the time. I find the stretch jeans from Sainsbury's are really comfortable and you can get them without zip and button.
None of this is probably any help to you though. At least in summer we can wear dresses.
Snap, I too have a lopsided abdomen due to an extensive parastomal hernia. Luckily (perhaps due to removal of omentum) my midriff is now flatter than it was so middle aged spread in that respect has gone - no more uncomfortable feeling under my bust.. My wardrobe has changed drastically. I now wear loose sports trousers and stretchy jeans/smart trousers in a 14 instead of 12. Means the waist and legs can be a bit big but it's better than being constantly uncomfortable. Thank goodness there are so many pretty flowing dresses, elasticated skirts and clever tops around these days - makes summer dressing a lot easier.
Hi gorgeous. Am pretty much like you only no dungarees for me but stretchy, comfy, longer tops, no zips. I think am prone to adhesions too And after 2 weeks in hospital in November to sort that blockage caused by op adhesions, I started to comfort eating a lot and quickly put a stone in 4 month. Every day deciding to stop all this comfort but cant ! ))) First think i done this morning , I binned all biscuits, jelly beans, and bread...... Tomorrow will probably miss it alot ! LOL
I recently bought what's described as a black dungaree jumpsuit from New Look- soft material and suitable for spring/summer with a tshirt under which is super comfortable and I can wear for work. I have also bought some jeans a size bigger than I usually have ( with stretch),hoping to wear them sometimes- at least for a few mornings!
I also thought my huge stomach would disappear on eviction of two massive tumours, but no such luck! I still look 9 months pregnant, dreading the summer when I cant hide in big jumpers and coats. I dont understand why tum is still huge, is it because after surgery the stomach muscles are trashed ?
I believe our stomach muscles go through hell during surgery. Tough to accept what we’ve been through anyway. When was your surgery? Hope you feel more comfortable soon lovely xx
I live in M& S tiered dresses. I have about 5. They just flow down from the shoulders. So comfy. They hide everything. And John Lewis pregnancytights. Anybody else found their breasts enlarged with treAtment?went from 34b to 38c. Mammo normal. Finally found comfy M&S mastectomy bra after much trial and error.waived goodbyeto one breast 20 years ago. I have a wardrobe full of size10s and naively believed one day I would wear them. Op was last October. And s lymphodema in feet meansI have a wardrobe crammed with shoes I cannot wear. Can’t yet bear to junk the lot!
I hadn’t thought of pregnancy tights - good shout. I have a tiered dress I wore a lot last summer - may have to invest in more. My wardrobe definitely needs a good sort out - like you , I have items I love I was hoping to get back into but maybe I need to start selling a few items on Vinted to help towards new comfier clothes that suit my shape now. Sorry you’ve also had to come to terms with losing a breast. My heart goes out to you xx
Empathise with the shoes issue. Swelling in feet and legs (I think early lymphedema in right leg) means the norm for me is a size larger, loosely tied lace up shoes, low top trainers/plimsoles or even Cosy Feet offerings. Being a shoe person I have racks full of lovely shoes and boots that I can't wear but hate to get rid of. I guess I will one day.
Yup, I am into what I cAll old lady shoes while my 🐆 leopard print heels gather dust in wardrobe. But I still put on a glamorous show, just don’t look at my shoes!
I wear M&S jeggings a lot , always get a size larger , variety of colours, and stretch ,high waisted ,but still glad to swop for pjamas in the evening .Cheryl
Yay, PJs forever - so comfortable. I collect PJ bottoms now instead of shoes. Loose high waisted trousers/jeans and panties (I have a stoma) are now my new best friends.
Thank you all so much for your replies. Means so much. We’re in this together. I agree with you Lyndy , most of the time I’m grateful I’m still here but every now & again I have a bit of a crisis about my shape.
I feel vain too ZenaJ but I just want to feel more like I did before diagnosis. We all know eating healthily ( most of the time) & exercise will help. At least we are about to enter salad season ( I know we can eat salads during winter but I prefer hot veg in the winter months).
organicinna , good start to bin foods you know aren’t going to help - I need to do the same. Maybe you will miss them but thinking it will be better to buy the odd treat when you fancy rather than having them in your home constantly. Must bin the treats in my home today.
delia2 - so happy to hear Olaparib is working for you - long may it continue.
Loorunner , that dungaree jumpsuit sounds perfect. Going to take a look online later.
Although dungarees are my favourite go to, I also own a few pairs of the Bella straight leg jeggings from Simply be but have them in size 16 to allow for more comfort around the waist ( I used to be a size 12).
I weigh the most I ever have in my life & it’s been creeping up each month (nurses weigh me every month when I’m having my bloods for Niraparib). Feeling like I need to join slimming world or such like to get the ball rolling. My body confidence is so bad I won’t let my husband see me naked. He’s very understanding ( we’ve been together 37 years) but maybe if I lost weight it would help me let us be more intimate again.
I also feel ashamed I’m moaning about this when others are going through such a tough time in life 😞
Hi Lynne. I am now on palliative care but I can still empathise with all the concerns you wonderful ladies have. I don't think it's vain - after all we've been through we deserve to be comfortable and it is so normal to mourn the loss of our former body shape. I found it difficult to come to terms with my new body shape - stoma and large parastomal hernia didn't help but I am truly grateful for the time I have had which was more than I thought. Thankfully, by some miracle, I have maintained a healthy weight and over a little time changed my wardrobe and style to suit the new me. I am receiving wonderful support and care at the moment and with a little assistance am still able to get out and about when I feel up to it, which is still quite often, I know I am on the way out but at least I can do it in style. I hope the Niraparib continues to work for you and that you have lots more time. Hugs. Jackie x
So glad to hear that you are now ok. Have had 4 blood clots, specialist at the hospital sent me to gynaecologist, no pelvic mass as he had thought. Am due to go to him this week, my stomach around my belly button is really swollen and sticks out on the right hand side above this. Feels really hard, am so scared of what he is going to find. Am on Xarelto, used to have a flat stomach, now I wear loose tops to hide the swollen stomach, from what you have said it is not going to get any better, oh well. Thanks for the info anyway, it has cleared up some of the things that I needed to ask the specialist!
Bless you. It may well get better - may just be I haven’t really tried to get my flat tummy back. I’d still ask your oncologist the questions you were intending to ( they know better than little old me). I was also put on an anticoagulant injection followed by Xarelto for 6 months after first surgery due to a DVT appearing.
Over time, things improve ( both physically & mentally) - best to try & take one day at a time xx
Well specialist at hospital was no help at all. Said to go back to doctor and get referred for an MRI scan to find out what this stomach swelling is. Was going to take me off of my Xarelto, til I reminded him that I had had 4 blood clots and they had not found out what was causing this. Thought that this was my first blood clot started to say to me that he thought that it was about time that I stopped taking the Xarelto, hadnt even read my notes. Just annoys me when you are just another one in a long line of people that they are seeing that day, makes you feel that you are not a person. Anyway, said that I had a lot of little clots in my right leg, going to keep me on the Xarelto, was not even going to give me a scan. Give up! Weather is so much better her, sunbathing, was wearing a macintosh yesterday!!
Hi! In New York and this spring has been mostly chilly. I have often worn black leggings under “flowy” dresses and dr schools booties because of painful feet. If not for the Dr. Scholls booties I have to wear Skechers chunky memory foam D’Lights sneakers which of course do not look too good under dresses lol.
Hi! I’m in Chicago been a bit chilly but signs of Spring abound! I wear leggings a pinpoint material with a built in tummy panel love them! Most days if not going out wear my pajama bottoms recovering from hernia repair surgery have to wear the support garment for 3 more weeks Jammie bottoms are heaven with elastic ha!
I have developed kind of a uniform of black leggings and a long tank or skirted leggings and a t shirt with different sweaters or jackets and scarves, depending on the weather. The other option is dark stretchy jeans and a tank with something over it to cover my arms. Even in summer, a long light scarf just draped around your neck can hide a multitude of lumps and bumps!
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Gynaecologist appointment update
Still Carpe Diem(ing)
Update. Still in hospital
