i am three weeks post RH and improving, if more slowly than I'd like. I was searching jos to see what others' experiences were, and have gone and got my self all het up about the risk of lymphodema. I was not given ANY warning or information about this at all.
do any of you have any tips on preventing it, or infor on what to look out for, or anything really!?
Not in a good place today as looking through jos made me feel like I will never be my old self again. Which is obvious I suppose but still not happy about it!
Also my whole family are having a go at me for 'doing too much.' I get myself food out of the fridge, go upstairs a couple of times a day, shower, and yesterday I wrapped some christmas presents. Is that too much? That is literally all I have done, and actually my CNS said,'we want you going up and down stairs!" I really don't need a telling off whenever I do any thing. I do know they want to look after me but I need to do bits to stay positive!
Hello Mollz - join the club! the you might find as most of us do, that the 'old self' will not return, how can it? However, I look on it as a 'new me' or rather, not so much new but different! I'm still getting used to the new me but I don't think I ever will - I'm the same, but different if that makes any sense?? There are still remnants of the old me in there but I find they are constantly overruled by the new me. There are always the doubting days & times when I'm not in a good place but there are also as many good days & forward planning days that it kind of evens itself out - helping to keep me on an even keel.
On the lymphodema, I think it may depend on how many nodes they removed, how high the risk is of getting it. I had 10 nodes removed & so far have only had a puffiness in the 'bikini' area. It has not gone any further than that, down my legs for example & I am very grateful for that. I believe the first signs of it in your legw will be swelling in the ankles so if you keep an eye on that & if you spot anything they have a lymphodema nurse who can help you learn massage techniques to help shift the fluid. I think the quicker you act the better the result.
I have a slightly different take on the 'old me / new me' thing. We aren't the same as we were when we were six years old are we. Nor 12 nor 18. The more experiences we have the more we grow and develop. We have all had a HUGE experience and have learnt and grown from that. I think that is the only difference really. I'm sure we all used to laugh at our mums when they gave us 'sensible' advice, and now that we are a bit older than we were then we might find ourselves more likely to repeat the advice of our mothers. It's only growing wiser is all it is. Disclaimer; That is my opinion and not necessarily a fact.
I wasn't told anything at all about lymphodema either, and my gynaecological surgeon looked at me as though I had two heads when I mentioned funny legs to him a month or so after surgery. I had 17 nodes removed and my legs were quite odd for a while afterwards. Walking about is good, lifting things is not so good. When I began my chemo-rads 11 weeks post surgery I was still having good stair days and bad stair days and so I chose the bottom bunk in the ground floor dormitory in the youth hostel I stayed in.
Unwrapping Christmas presents is much better for you than wrapping them :-)
Lol! Yes I think people should start bringing me presents!!!! Would def cheer me up a bit! Although I do enjoy a bit of wrapping and fiddling with ribbon.
I wasn't told about lymphodema either! It seems to be that not many of us were told about it. I had nearly 40 lymph nodes removed (yeah, massive amount - queried it with the consultant and he said it varies from patient to patient) and luckily I didn't have lymphodema.
As for doing too much, your body soon tells you when you are. I was doing much the same as you at that stage. Just do little bits then have a little rest then do a little bit more.
You will have 'off' days every now and again, I did too. The thing is they get less and less as time goes on. Think we all get impatient with ourselves and want to feel well and able again sooner than what our bodies let us. Hang in there, it will get better.
Hi Molly....Do you go for short walks outside? I needs roads which started 6 weeks post opinion so I was determined to get into some sort of physical shape! Started with 200 metres or so and by 6 weeks I was walking a mile three times a day...it felt really good to get outside in the fresh air! I also have wondered about the new me and have decided to make it a healthy and fit new me, and I now go to the gym a few times a week or a trek around the park with the kids.
On the lymphedema front, I had a physio come see me in hospital to talk about re-rehabilitation through exercise and lymphedema and she said...use Sun protection, use antiseptic on any cuts or bites, keep active and don't shave/wax/epilate legs as this can encourage fluid build up and cuts. I have shaved my legs, just very carefully!
40 lymph nodes Cheryl! That's monstrous! Still, it's great to know that even after such wholesale removal you don't appear to have had any difficulty with it.
Hi Mollz - well done for not needing any further treatment. I had my RH beginning of September and was fortunate to not have had any problems with lymphodema. I had been advised to walk daily by physio and gradually increased from 10 minutes to 20 minutes and then by fourth week a mile. I must say I have had my legs waxed as did not realise you shouldn't, but so far not had any reaction. Physio gave me booklet and told me about doing regular pelvic and abdominal exercises. I am able to do most things, but am still careful about hoovering, lifting shopping bags and walking the dog.
Am just starting my chemoradiation Monday 8th as I was a 2a2 and there may be risk of recurrence.
I think positive thinking is the best medicine. I don't think any of us really forget the daily "cancer gremlins" - thoughts which come into our heads. I think best way is to be as positive as possible and do things such as exercise classes with friends etc. I have been off work since September so am enjoying being away from work stress and last week did a Xmas cake (never have time to do one normally and taken up knitting. Do volunteering for our local dog rescue and keep busy. Having said that, you do need to rest as well. Have also been on 3 short holidays, Lake District with partner, visit to friends in Cheshire and with Mum to Eastbourne for a "turkey and tinsel" break!!!
I do sometimes think "why me" and "what did I do wrong" but know this is illogical. I have been feeling "on a high" recently, but know that when I start the daliy drive to the hospital for treament, it will probably hit me more. I wish oncologists did not have such a serious look on their faces - makes me worse (though she felt my future prospects were "very good").
Keep a good balance of doing things you enjoy doing and resting.
Thank you Janis, you're inspiring! Funny, I was thinking if taking up knitting too as I remember enjoying it at school and my daughter would like to try so I'll need to be a step ahead! I went out today!!!! First time. bumped into someone I know who is also going through cancer treatment, strange coincidence. Then had massive nosebleed!!! Almost gave up and headed home, but I was determined so I kept going! Back in bed but feel human!
Good luck with the chemo-rads Janis! Are you driving yourself to hospital?? My onc told me my chances were 'quite good' so yours sounds a tad cheerier than mine!
Do NOT try this at home; Now that I am three years post rad hyst I am allowed to to whatever the hell I like so on Saturday I dug up 50kg of potatoes and Sunday I carried all the pieces of an oak tree out of the road after the husband butchered it. Today I shall take it a little more gently :-)
Hi Mollz, hope yor recovery is going well! I'm a year on from my radical hysterectomy, also didn't know much or anything about lymphoedema, had a friend who is 5 years clear of CC, who has it, explain it to me! I have varicose vein problems from young,so my gets all confusing! Sometimes, I just want to run away from my body, I know that sounds so over the top, but I inda feel very like damaged goods!!! Then I try to cop on & remind myself of my lovely boys, special husband, & just life!!! Hope I didn't sound to corny, take care, & walk!! I found walking the best! xxx Salma
Hope things are going ok, just something small to share- I went nuts doing different arts & crafts things, some with the boys & some just on my own, silly things like little rag dolls from magazines etc. I just wanted to be busy, & I ended up enjoying it, my littlest boy would often lose pieces or draw on stuff & mess it all up, but it was all good!! Take care, just a little check in x
