Had a cry today in appointment with Lymphodeama Nurse. I knew I was going too. Felt it welling up inside before I went in. I feel just as I get my head round this crap illness, something else pops up. I have a badly swollen knee due to debris from my arthritis. ( I only know I have it coz had bone scan to rule out mets a few weeks ago). Then week after scan, it flaired up. It means I can’t get about too well. I hobble like my 85 yr old mother in law.
On top of that there is the stiffness and aches and pains ALL OVER since being on Arimidex (11mths). Plus the zero sex drive and hot flushes. I am seriously thinking is it worth it to have prolonged life if it is so miserable?
Seeing my GP on fri about the knee and intend to tell her just how exhausted I feel (not had a full nights sleep for 18mths). Have had to stop anti inflams as upsetting my stomach.
Then today, I had to confront the lymphodeama. It is mild, 7%, but have been recommended a sleeve and gauntlet. When it was fitted today I just couldn’t take it any more and blubbed for England. It is yet another sign saying ‘cancer victim’.
Realised this a.m. that I can’t do half what I used to. Babysat at weekend. Not even whole days, just a few hours with OH there to help too, and this a.m. realised I had fatigue. It is just like when I was having chemo, my arms have no strength in them. Does that mean I have to accept that the only way I can babysit is with OH and him do all physical stuff and I just supervise?! I enjoy spending 1 to 1 time with them all but it looks like thats something else I can’t do without consequences on the following days.
Got home tonight and tried to explain to OH who can’t look at me when I get upset these days. A hug would have been great. All I got was practical solutions and theoretical questions, no emotion.
I’ve just about had enough. I really want my life to be back to normal.
HI irene,
you must be feeling really down just now, i know it,s hard but u have just got to go on especially for ur grandchildren and family, it will get better easy for you to say i hear u say, but what else have we got.
Hope that things get easier it,s hard to say what i really feel on paper especially as i,m going through it again for the 2nd time feels as if there is no end i,m on chemo too had a course today and feeling a bit low myself and really crap
I know what u mean with the babysitting as i have an 17 mnth old granddaughter and it is really really tiring at times and i feel guilty that i can,t always give her the time she needs, my daughter and baby still live at home moving out shortly i hope, i don,t mean that in a bad way as she will be moving in with her partner and hopefully having a proper life of her own.when i feel really bad i think of the really young girls with really young children and babies and feel bad for them and hoping they r getting the support they need, doesn,t mean i don,t feel bad about everyone else too, i do. When u r on a downer and having a hard time it can be hard to pick urself up, but u r really having a hard time and people who haven,t walked in our shoes don,t really understand most try to others just have no idea.
I think men in general r hopeless with the illness thing my husband is the exact same he is to practical sometime when sometimes, it is just a hug or a little tea and sympathy u want but thats men for u (not all men r like that of course just wish i had one of them sometimes).
But it is good to get ur feelings out it will give u some relief and this is the best place for it, is there no-one u can talk to face to face a good friend mabe or member of family sister if u have one. Whoever u feel closest to i suppose.
Don,t want to rabbit on and give u a headache to add to ur probs.
Sending u a big cyber hug and thinking of you
Reneexx.
How sweet Jen thanks. Yes humour keeps me sane but I have to fight the thing from the dark place sometimes too. Just been back to chit chat and fun in the hope it would perk me up abit and it has. I am so impressed at the intelligence and diversity of the lovely ladies on this site. You all keep me going.
Irene, please don’t underestimate the impact of sleep deprivation it’s b***y evil and can literally drive you a bit mad. Don’t forget to mention it when you see your doc. It puts a serious tint on the way you see the world and thats without having to deal with BC. It’s not wrong to seek a little help.
I’m not sure what treatments you’re having right now but there’s some herbal sleeping tablets like natracalms that help some people (I don’t think they make much difference to me and they are herbal which doesn’t mean it can’t interact with other drugs) so have a chat with the doc.
I personally use hot baths and aromatherapy oils to help me get to sleep. It never appeals and always works
hope you get some proper rest and wake refreshed soon.
Hugs as well. We need some kind of bubblebath that feels like a good old fashioned hug.
I’ve only just had a proper hug in the last week as everyone was scared of hurting me post op for the last 3 months. Turns out I’d endure almost any amount of pain in exchange for a good proper hug.
Well I am a huggy person and would give you both a huge hug.
When you said your hubby just gave advice and no hugs sounded familiar.
Your entitled to feel ‘crap’ and have a cry Irene.
I worked today and in with babies at the nursery. Felt like crying when i got home my arm and shoulder ache and my back.
The thing is if we havent got mets, I feel the medical people dont care about lymphoedema or flushes or joint pains or the fact the medication ages some of us by 20 yrs at least.
We must have that phone call Irene and we can both MOAN for England.
HI Irene - so sorry you had such a horrible day, and it came on top of everything else. Sometimes with men it’s not that they don’t care, just that they don’t know what to do for the best. We want them just to know what we need, but they don’t. Sometimes I just say “I really need a hug right now” and I get one, and that helps a lot. Ask for what you need!
I was a lymphoedema nurse and know exactly what you mean about the added insult of having lymphoedema, dealing with a chronic condition when you have been through so much all ready. The good news is that with only a 7 per cent difference, this is certainly mild. I wonder if this is in your writing arm? Only ask, because the arm we usually use can be up to 10 per cent larger than the other anyway. Unless measurements are taken pre-op it is hard to know what change has taken place. It might well be that with simple lymph massage, exercise and skin care you won’t need the sleeve for long, or just use it for exercising. Do hope this will be the case for you anyway, I am sure the lymphoedema nurse will take good care of you.
I’m having radiotherapy at the moment but then will be on hormone treatment - probably Arimidex. I have to say that I am dreading the side effects that so many people have described, but guess it’s just got to be done. Good luck everyone - one day at a time eh! Love Sarah x
Thanks seabird, good advice. I must admit it had crossed my mind about the size thing. Yes it is my writing hand. I’m affraid I have already made the decision not to wear the sleeve unless it worsens, or aches, and certainly not when in work or out and about. Making that decision has already made me feel better! I will do the massage though, that makes sense.
I do think sleep deprevation may be at the very bottom of my probs and will def mention to doc on fri.
Cathy, I thought I had wispered back to you but it has come onto this part of the thread, why? Anyway, good job it was nothing too personal! I don’t mind others knowing where I live and what I do so that’s ok.
Hi Irene M sending you a big cyber hug ((((((((hug))))))))) I could have wrote your words exactly. I have a 4 month old grandaughter (it’s view by appt only) I never get the chance to babysit and gifts are never right. I am convinced son & daughter in law think I have something catching. Only get practical advice from OH or ’ do;nt be so negative’ It’s fear not negativity. Lots of love Bobbie we will get their kid, we have to!!!
Hi Irene - If it’s any comfort at all, where I used to work we only gave people sleeves if the affected arm was more than 10 per cent larger than the unaffected arm (as a rough guide). Smaller difference than that, people would see how they got on with the skin care, massage and exercise. Every unit is different of course, but I am only telling you this to reassure you that your choice not to wear the sleeve except in certain situations , and to see how you get on, seems reasonable. Do have a chat with your lymphoedema nurse though, next time you go, about how you are getting on. Hope you can get some better nights sleep soon, nothing worse than facing the day if you are exhausted before you get started. Sarah x
Just wanted to say I have picked up a lot since making the decission not to wear the sleeve, at least for the time being. Hoping doc has some answers tomorrow for some of the other p** I am dealing with at present.
Also, thanks to the girls on chit chat and fun. They are all crazy but I had a real laugh last night and laughing is great therapy, for me anyway.
Hey Irene,
Just replied to you on anotherthread, sorry it’s rough for you and glad you’re feeling a bit lighter now. Hope your doc was helpful - let us know how you got on. Ellie xx
irene i really feel for you as a fellow sufferer who also has to wear a glove and a sleeve thsat feels like a vice! just wanted to send you a hug ,we all get bad days when everything seems to get on top of us ,its all to do with sleep deprivation which can make you really ill try your gp or get some herbal remedeis if you dont want more drugs unfortunatly the arimadex doeahave side effects but i put up with it as its keeping my liver scondaries at bay.as gor the grandkids i have 12 and find just having a few round at a time wears me out but the kids know when mums had enough and depart quickly but i know its hard to accept that life will not be the same again .but im really grateful that im still here after 2 very hard years .please take care rest as much as you can and try to find a little time just for you . BIG HUGGS xxxx lynn
