My chillow arrived today! In the nick of time as I had yet another terrible sweat in the night. I have decided to write down what I am eating cos this can’t be right (4 weeks of 6 nights out of 7 feeling as though I am standing in a shower) and wonder if its related to something I am eating? Looking forward to using my chillow tonight! Even if I can solve this lot of sweats with the food issue I am sure it will come in useful for the induced sweats of chemo/tamoxifen!
I know what you mean Judy re tightness. Every morning and late evening I am in pain/discomfort all down my left side and it almost feels raw inside but also tight. My back scar is beginning to heal and I can feel tightness across it (but not healed enough for bio oil). The other area I am beginning to find tight is under my armpit. My scar is right in my armpit (not just under as my friend’s is) and I am finding it increasingly tight (thats probably because I haven’t done my exercises as much as I should for fear of upsetting things post my secondary bleed and constant oozing). Am now doing them 3 times a day to try and make up for it.
What do you mean re your ribs being firmly stuck?
Another strange thing I find is that every time I drink something cold I can feel it down my left chest almost like the liquid is going down there behind my new boob and to the bottom of my ribs, not into my tummy where it should do.
I am lucky to have the use of intensive rehabilitation for 2 weeks with my employer and will use it, just can’t decide whether it would be more useful now or towards the end of chemo as its nearer London and means staying away for 2 weeks.
Here’s to gradual improvement, getting stronger and more flexible and cool nights!!!
Hope the chillow works for you, and you get a good nights sleep tonight. I know exactly what you mean about the cold drinks - thought it was just me, it feels so weird down my left chest, like its so near the surface somehow!
I had a left mx with immediate diep free tram recon and ax clearance on 23 Sept. My op was 15 hours but I was only in hospital for 6 days! Recovering well at home and starting chemo on 5 Nov - TACT 2 Arm 2 Epi-CMF accelerated.
What a relief to read your post and realise that I am not going mad - I have also had that strange feeling in my chest behind my new boob when I drink anything cold!!
My OH just rolls his eyes and thinks I am imagining it, and I metioned it to my PS yesterday, but he ignored it!
I also have very sore ribs underneath my new boob, but all he said was that they didnt go near my ribs during surgery!
Even though my flabby, post-2-kids tummy was cut out, transplanted to my new boob and the skin stretched together to form a lovely huge smiley scar, the worst thing so far has been my arm. I have been very good with my exercises as I am paranoid about getting lymphodema, but this last week I havent been able to stretch it as much as before. My scar is just under the armpit (I previously had a SNB) and I get this terrible tight, pulling pain under and right down my arm. I was told just to keep up the exercise and phone the BCN about getting a compression sleeve. I will call her on mon and see what she says.
Oh how good this site is for not feeling alone!! Hurray I am not the only one who has that cold sensation. I told my OH about it and he said it can’t be happening otherwise when the surgeon drains me each week white wine would be coming out not blood! Cheek!!
Let us know what the BCN says on Mon Anne, still trying to stretch my under arm but feels like it will rip horribly, rubbing bio oil onto scar now and upping the arm stretching.
I get that cold feeling too! Wonder what causes it? Its very strangeisn’t it?
Maybe thats where all the fluid in our seromas comes from,mine would be white wine and cola!
I also had the cold thing - it lasted for about 6 weeks post surgery, and as we all say, most odd!
Hope the Chillow worked / helped Ostrich. My sweats are much better, except when I’m in my first chemo week when I seem to have no temperature at all… but I’ve just had my LAST chemo and so hopefully it’ll get better now…
Re tightness down the arm. this is where the lymph system that has been cut off is packing in and causes the cords that you can see under your arm and sometimes down your arm. We were shown how to massage in little circles from the wrist UP the arm towards the armpit over the tight bits, with the arm elevated (try doing this whilst sitting on the sofa with your affected arm resting on the back - arm gets tired otherwise) - I found this helpful. A sleeve wont help, and wont stop lymphodema either - just helps control it if you get it…
My arm was much more painful in weeks 3-6 post op than initially, but settled down after that. The numbness in my upper arm has only just started to get better - I had my surgery 12th May.
I have my chillow now and suddenly dont know what to do with it!! Do I sleep on it under my head or body? Do I sleep on it all night from when I get in to my already cold bed (brr) or grab it and shove it under my back when I wake up sweating??
Thanks for the advice re armpit/arm - will try that massaging thing!!
Do you, or does anyone else know whether massage helps with clots? Aside from the seroma (which is, day before seeing surgeon, giving me jip in my shoulder) I have thickening/lumpiness/soreness on my side. The surgeon said these are probably clots from my secondary bleed or just post op but that they wont come out with draining but will be re-absorbed over time (months I think he said). Thing is that it is this that causes me the most pain. I am trying to wear a secret support top and occasionally my post surgery top/bra but my side is so swollen with these clots (which I think are actually under the drain holes) that I get a massive dent by the end of the day where the elastic in my tops is pushing against my side. Aside from wearing nothing (which my surgeon doesnt want as he said I should have some support) I can’t think what else to do.
My OH said maybe massaging the lumps/clots will help them disperse so I wanted to know if anyone else had any ideas or knows if massage helps?
Should rename this thread - “oooh thats odd following mx and recon - any tips!?” LOL
In reply to your questions of 16.10.08. The tightness is mainly along my scar. Have been swimming for first time since surgery in June and hurts to stretch out to do breast stroke. Have asked doc to refer me to a physiotherapist and his reply was “how could this help me?”.I explained my back was tight so he said he would do me a referral.(He’s never examined my back or new boobs).
Had a massage last week for first time but had to have it sitting in a chair lying forwards.
I too had the chill experience which has now gone. Also my ribs felt funny under the one side. It’s great to know other people had same problems as my partner thinks I’m mad!
My lumpy side is starting to subside a little. I haven’t got round to massaging it. Been a real lazy bones and spending more time on trying to get full arm movement back as have very tight cords under my arm.
I hope your massage helps. My back scar is still not 100% healed and has a bleed once or twice a week from the middle where they had to pull the skin more to get it to join so everytime I do my arm exercises I am worried I am making it worse! Its a catch 22 situation I feel. If, when it finally heals, its still tight then I am hoping massage/physio will help. I am going to use the rehabilitation centre through my job at the beginning of Dec (5 star food, intensive physio and massage, brill!) so hopefully things will have settled with my wound/scar then and any further work can be done.
Glad to hear someone else had a chilly side (if you know what I mean, it does make you feel like you are being hypersensitive when you mention it to others!)
I have my chillow and still cant work out the best way to use it. I tried sleeping with it under my head on Saturday night and it was freezing. I still woke up drenched in sweat from my boobs to my pelvis so maybe I need it under there! Thing is I start chemo tomorrow and worry that when my hair falls out if I sleep on the chillow my body temperature will drop so low I might wake up an ice cube!
Good luck with yours, let me know if you figure out how to get the best results!
Hey Ostrich - feeling guilty for not having been on for so long to answer your chillow question!!
I found the best thing to do was to put the chillow in a pillow slip, put it flat on the bed long ways down the body and roll onto it when I needed it, which wasn’t all night. It then cools between laying ons. I wear pj’s so it wasn’t too cold.
Hope your chemo is ok. I’ve just finished mine - I had TAC which was a bugger, but all finished now and I feel SO proud of myself! My hair took about 2 weeks to fall out and I have to wear a little hat (soft velor beenie thing) or a scarf at night to prevent freezing - I’ve had my chillow under my head only when temp been up - as you say, too cold for that!
I’ll try to look in more often! Have you joined a ‘chemo’ thread - I found this particularly useful - about 7 of us all starting at the same time have kept in touch throughout - very supportive!
Thanks for the tip re the chillow, I might try it under the body but I’ll have to leave it on the floor and grab it when I need it otherwise there’ll be no bed left for hubby as I am already taking up well over my share with my v pillow to help me stay on my side. I wish there was something I could do to stop them in the first place rather than when they happen! I stink, constantly! And as my wound has not healed and now re-opened deep baths are still just a dream and showers something to be done quickly to stop me getting it wet!
I have joined 2 chemo threads so I do have some other ladies to chat with, thanks for your advice, hope you are now well??
Ostrich
Have just read your original posting on this thread and wondered how the tightness is in your arm? I had really bad tightness maybe 6-8 weeks post surgery and was also worried about the possibility of Lymphodema. I managed to get rid of it completely by my own massaging method!
It worked for me fairly quickly.
First of all I ‘walked’ my arm up the wall and stayed in the highest position at full stretch for several minutes, massaging with my other hand by grasping my wrist firmly and pulling back towards my armpit as tightly as possible in a sort of sweeping/pulling motion. By doing this you are giving your arm the fullest stretch you can. I was pretty ruthless about it and could feel different parts of my arm releasing with a kind of poppping or cracking. At first I thought something had snapped, but afterwards realised that something had released and it was helping. I also held my affected arm up in the air above my head and held the wrist with the other hand and pulled away from my armpit as hard and long as poss and threw a small hand towel over the top of my bathroom door and held one side with my right and one side with my left arm and pulled down as far as possible with my unaffected arm, so the affected arm was stretched as much as poss. Sometimes I would just hang there for several minutes - pulling as hard as I could in both directions!
I did these exercises religiously night and morning.
The cording didn’t disappear over night, but by keeping up my massage and stretching, it went more or less completely over about 4 weeks and now I feel just a slight tightness in my wrist from time to time.
Although I had been told that it would go away eventually, I felt quite pleased that I had managed to speed up the process. Hopefully it will work for you too.
Lotty
Arm movement better than it was cos I was stretching etc but have not fully got my movement back cos I am still struggling with my wound (back wound opened up) and this makes me afraid to move too much incase I undo any healing! Catch 22! I was trying massage from the wrist up and that helped too. I am currently trying just to use my arm normally and wait until I have healed fully (now 6 weeks post op and NOT healed) and then work on my arm. I am going away for a week’s rehabilitation at the beg of Dec which involves intensive physio so hopefully I will be healed by then and able to concentrate on my strength.
Well done to you for sorting your arm out sooner, xx
Yes, I’m well now!! I found the best way for me to cope with chemo was to now dwell on it, not think about ‘potential’ side effects and just deal with the ones I actually did have!
The worst thing for me (apart from hospitalization for infection twice) was my mouth, which ulcerated really badly each time, and I am so glad it’s finished. But it’s not the end of the works. In fact it’s the beginning of a new one.