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Feel like my life is over

33 REPLIES 33
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Re: Feel like my life is over

Hi Tigerlilly

I haven't been on this website for a while but you can see I have posted a topic today 30 April - basically saying that I refuse to wear the sleeve/glove thing except for gardening, housework and driving - and have still managed to get the swelling down from 28% to 18% in 2 months - so speak to your L nurse and come to a compromise - even if you try to do what I have for a couple of months as an experiment.

As far as your work goes - can occupational health advise you - an exployer has to make some reasonable adjustments if you have a health issue - hope it works out for you.

Rainforest xx

Member

Re: Feel like my life is over

Starfish, losing weight really does help and it's about the only thing we can have much influence on. Also if you look better and you know it, the sleeve has less impact because what people see is your confidence. Plus, they can't be staring at my sleeve and my lack-of-cleavage both at once....

About the hygiene issue, my wonderful LE nurse suggests a box of those disposable vinyl gloves you can get in large DIY stores to have in the bathroom. Costs about £6 for a box of 100. I'm getting into a routine now whereby I can do any veg-chopping, meat-slicing etc (what you could call direct food-contact cooking) in the first halfhour of the day (yes, even before breakfast, urgh) without my sleeve, then go get dressed. Or last thing before bed, but I did accidentally cut myself through tiredness that time, so maybe the early morning is better for me.

For those struggling to wear a sleeve to work, you have a right to comply with your treatment plan as much as any patient has. Conditions arising from cancer and its treatment come under the disability act and the employer has to make reasonable adjustments to your duties and working conditions, including the option to redeploy you. The long term risk if we don't look after ourself is deterioration of the LE to a time in the future when the swelling won't go down, or you can get cellulitis after an insect bite (hello summer) which is potentially very serious. Life isn't over after cancer, so if we are going to be here a while longer we need to get used to looking after ourselves a bit more!

Member

Re: Feel like my life is over

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Member

Re: Feel like my life is over

Hi Tiger lily,
I haven't read all of the thread so forgive me if I repeat what anyone else as said. I am also a nurse and need to do ANTT as part of my job, I was diagnosed during chemo with lymphodema.
I am back at work, and am probably sailing close to the wind, but I just wear a sleeve and roll back the cuff when doing ANTT. At other times I am very particular about wearing the stocking + glove correctly, doing the exercises and SLD at least twice a day. I have also paid for MLD.,the lymphoedema society provides a list of practitioners. I too was taught the Vodder technique and insist on having a meal break, never got one before, so that I can do it and the massage.
My first sleeve was also too tight at the elbow, went back to my G.P. and got prescript. for bespoke sleeve making sure they included the measurment for the widest part of my elbow.
I'am sorry this horrible side affect is affecting your life so much and hope you get the support you need from OCCI Health. My colleagues and client group have also been very supportive- I now tend to do non sterile procedures, teaching etc.
wishing you all the best
Barb.

Member

Re: Feel like my life is over

I havent got any helpful tips I can add I am afraid. I was dx with lymphoedema over three years ago towards the end of taxotere but before I started the rads. My arm has got bigger in the meantime. Could have been because I did not wear sleeve. I too have been told to wear a separate glove and sleeve and that I can only remove the glove briefly to wash hands after using toilet. I asked how can I eat an apple for instance wearing a glove. I was told eat it with the opposite hand! They are just so unhygienic. The other day I visited a friend in hospital. How was I supposed to use the hand gel wearing a glove? I wore a gauntlet but was told I must absolutely not fold back the glove bit.
It is very depressing and does not seem to get any better to come to terms with. I find people also ask why my arm is swollen which doesnt help. I have been seeing a lymph nurse every week nearly since January with no improvement. Last week my arm was put in a sort of airbed type sleeve which was plugged in and inflated and deflated for 15 minutes. The arm came down half an inch but quickly went up again. And I became light headed. It seems they do not really know what to do for the best. Although everyone is agreed that losing weight could have a dramatic effect.

Member

Re: Feel like my life is over

Thank you all so much for taking the time to reply. I am feeling a bit better about it all now, I know it's going to be a bit of trial and error to get the right fit etc. I'm not wearing my glove and sleeve religiously, and am only wearing it to work at the moment, tbh any swelling I get while doing anything doesn't seem to be any better with or without the glove and sleeve and whether I wear it or not the swelling seems to go down quite quickly.
I don't get any pain with the LD, my hand just feels tight, infact my arm aches more when I wear the sleeve.

Work have been a bit better with me and the union rep has said I can only do what I can do and they have to accomodate, me end of! I am seeing OH this week and have been to the Fit For Work Team and they have been really helpful. So we will have to see how things pan out.

Once again thank you all for your advice.
Tigs xxx

Member

Re: Feel like my life is over

xwelcomex - can I ask where you learned the Vodder massage? Would love to improve the SLD. Thanks, Elinda x

Member

Re: Feel like my life is over

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Member

Re: Feel like my life is over

hi norberte

it is the pain it eases and not the swelling you are right thank you xxx

Member

Re: Feel like my life is over

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Member

Re: Feel like my life is over

Hiya

Thanks everyone for all the advice

Just wanted to add that I find taking anti inflammitories (diclophenic) on a regular basis ( not just when i have a flare up) has helped my swelling. It doesn't go away but does help it, especially if i know I am going to have to be using my arm. Another thing don't accept just being given two sleeves, insist on more, when i got my perscription for my last two, a week later I gave in my perscription slip again to the GP surgery for two more.

like norberte I use lots of the thin lattex gloves. I now buy boxes of the latex gloves from the pound shop or B&M and have them everywhere. i put gloves on to go to the loo and then throw the glove.

rhi x

r xx

Member

Re: Feel like my life is over

Some may already have this but thought I would put it on here.It shows some simple lymph drainage.

http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Lymphoede...

If you scroll down to manual lymphatic drainage (green writing),click on that and then scroll down to simple lymphatic drainage,click on that and it takes you to some diagrams of what to do.

Other link didn't work.What a palaver lol.

Melxx

Member

Re: Feel like my life is over

Hatty - you're treatment really is more important than lymphodema. Personally if I was still using the portacath I wouldn't have it removed.

Thanks for the link, I'll take a look at that.

Member

Re: Feel like my life is over

thanks Tigerlilly and Elinda thanks for the pre warning about the portacath as mine is on the side that im going to have the lymph nodes removed so perhaps i will now mention that and ask them to remove the portacath at the same time. I only have to have Herceptin now but my veins are rubbish.

I have sourced a private specialist should i get lymphodeama and she has trained here seems its the best in the world. Thought it may be of interest to others. The Dr. Vodders school.

http://www.vodderschool.com/

Member

Re: Feel like my life is over

Tigerlilly

A couple of thoughts on your work situation - I believe you said previously that you were seeing a union rep? If its the RCN I would take this to a senior level if you're not getting enough support. I found some of the RCN rep advice a bit patchy and not well informed when I needed them.

Have you contacted the lymphodema society? http://www.lymphoedema.org/
It's not a well-funded charity so quite hard to get through but you can leave a message. They may have some advice on this.

The other thing is I know that some of the nurses working in BCC are very knowledgable about lymphodema, I spoke to one who had run a lymphodema clinic. It might be worth using the Ask the Nurse e-mail facility to get specific advice.

Hope you're feeling a bit better today. Elinda x

Member

Re: Feel like my life is over

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Community Champion

Re: Feel like my life is over

Hi Tigerlily,

Completely get where you're coming from! I did all the execises and looked after my arm to prevent getting lymphoedema then abot 18 months after op was caught on the arm by heavy lift door and got it. It felt like the last straw, in fact it upset me more in some ways than the cancer itself!!

I am a big girl which doesn't help the condition. Ready made sleeves don't fit so I have made to measure but they are still uncomfortable and horrid and I hate them! In fact I hate them so much that I don't wear them,I find they make me so miserable I prefer to deal with lymphoedema. I excercise the arm do SLD and did have MLD from a lymphoedema practitioner once a month ((this hasn't happened for several months but hope to be able to get sessions reinstated).

Obviously if you can tolerate the sleeves you'll be helping yourself more but for me pschologically/emotionally it doesn't work. Whatever you do you must keep an eye on it , try to avoid bites and stings and if you think you have an infection go straight to the DRs.

I do wish you luck, perhaps if you get a made to measure or a different brand you might find it better once you start coming to terms with having the blooming awful condition. Whatever, do keep coming on the forums even if it's only to let off steam.

Best wishes, Julie x

Member

Re: Feel like my life is over

Thanks for all your comments and support, hopefully I will be able to manage this bloody awful side effect, am being rebellious at the moment and not wanting to wear it at all and just take my chances. I haven't been told about any massage yet and as I am on herceptin for a year the lymphoedema nurse says they wouldn't offer me massage or the machine you can get as I am still receiving active treatment.

Karis, I haven't heard about the lebed exercises, no doubt I shall be investigating different treatments etc in a couple of weeks once
the initial shock has worn off!

Good luck to us all in our very fetching yucky beige sleeves!

Tigs xx

Member

Re: Feel like my life is over

Hello
So sorry to hear about all the problems with the sleeve, especially with the nursing. Would you mind if I ask a question please??

What do you think of the lebed exercises for lymphoedema. One of the breast care nurses, who seems to have lots of experience, advised me to do them religiously morning and night, to keep it at bay. Surgeon says not lymphoedema, just bad cording, other consultant says it is, lymphoedema nurse says it isn't, doc from work says it is - well you get the picture. What do you think?? I don't seem to have seen anything about on here. I'm not convinced so far - but not achieving them that often due to being so tired.
K x

Member

Re: Feel like my life is over

Dear Tigerlily,

So sorry that you are suffering and hopefully you will get some help from the Forum.

It sounds as though you need some specialist help. Please phone your BCN and ask her to refer you to a Lymphoedema specialist. Some hospitals have them and some will refer you on to another hospital. I asked to be referred and was sent to a hospice in a nearby town. My specialist is phsysio/lympho trained. You can be shown how to move the lymph to get rid of it. It sounds as though you need a specially made glove with a silk lining over the elbow. There may be normal gloves which will fit but you do need a specialist to decide. At first I found that wearing a glove made things worse so I just had a sleeve with a thumb hole.

The main thing is not to get infection in the arm so you will know that if the sleeve cuts you it is useless.

I do massage every night on my arm and keep it well moisturised. I was nearly in tears at first but now have things under control and only wear the sleeve when flying. I never thought that there would be light at the end but I got there.

Whilst you are awaiting a referral look up Manual Lymphatic Drainage and the exercises on the following web page.

http://www.activahealthcare.co.uk/videos/armexercises.html

I hope this helps.

E

Member

Re: Feel like my life is over

Hi there, yup agree with you that it is a total slap in the face to get diagnosed with lymphoedema. I don't really want an incurable but manageable condition thank you very much. However, I have been able to "manage" mine to a certain extent.I have to put up a market stall twice a week and lug about bread baskets filled with cakes and still manage to do all that but have to just be aware of how much I do and keep up with the self massage and wearing of the not so lovely sleeves and compression top.
Come on here and let off steam because we all know where you are coming from,there doesn't seem to be much help or understanding for us lymhomaniacs but at least we have each other ! Big hugs.

Sandra x

Member

Re: Feel like my life is over

Hi Tigerlily
Welcome to the club. I wear my sleeve when I remember and can bear to put it on. I hate it and sometimes suffer rather than wear it. OH kindly bought me the midnight lace one from Lymphodiva a few weeks back and I do wear that more often. I know what you mean about feeling grubby. I teach in a socially deprived area and many of the children are, to put it bluntly, dirty. The midnight lace hides the dirt but I still go through the rediculous process of pulling back my sleeve to wash my hands before I eat. Then I pull it back down!!!! It does take a while learning how to manage the lymphodema. I find I have flare ups when I need to wear the sleeve alot but then there are other times when I can go days without. I recently went through a period of depression and facing up to the fact I had been left with this irritation was a part of it.
Don't worry about ranting that's what the forum is for. I do think that there should be more options available to us, and to expect us to manage with two sets per year is rediculous.
Keep battling things do get better.
Love and support
Chinook.

Member

Re: Feel like my life is over

Hi when I was first diagnosed I wore mine everyday from morning until around 6 or 7 in the evening and as I said before my hand went back to normal after about 6 months.I have had lymphoedema for 3 years and must admit that I have not been wearing my sleeve as much as I should do lately,mainly because of hot flushes which are driving me bonkers at the moment and I can't help but rip it off.

Melxx

Member

Re: Feel like my life is over

Tigerlilly - I wear my sleeve every day from first thing after my shower through to about 6pm. I didn't at first because I couldn't bear the idea of it. However, it did make my arm feel a whole load better even though my lymphodema is mild so that's an incentive to wear it.

It may be that your sleeve isn't quite right if its cutting in too much. I had two other sleeves before I got this one so it seems to be trial and error. See how you go and then make another appt with the nurse if you're not happy.

Hatty - try not to worry too much. I had a full axillary clearance (3 levels) and 17 nodes removed. I also had seromas and a portacath on that side all that made me more predisposed to getting lymphodema.
Remember you're more likely not to get lymphodema than to get it.
Elinda x

Member

Re: Feel like my life is over

Thanks for your good wishes Hatty, I don't think it really matters how many nodes you have removed if you're going to get it you'll get it. I too was paranoid about lymphoedema and here I am a year down the line with it. Try not to worry too much about it (easier said than done I know), I'm sure there are more people that don't develop lymphoedema than do. I had 17 nodes removed.
Best wishes Tigs xx

Member

Re: Feel like my life is over

I am so sorry to read this, I have been talking to my surgeon about my fear of lymphodeama as im to have my nodes removed very soon now had chemo first. I even thought about asking them to take my arm off if i get lymphodeama the fear of it is that bad for me. I told the surgeon my fears of the impact on my quality of life. Wouldnt you have thought with all todays technology they could come up with something. I know this doesnt help you but just wanted to say i understand how you must be feeling id rather do a 100 chemos than have the nodes removed. Im having level 1 and 2 removed how many did you have removed to get the lymphodeama?
Sending you as much good wishes as i can.

Member

Re: Feel like my life is over

Thanks for your replies, it doesn't help that I have podgy fat arms and hands anyway lol. I have taken the sleeve and glove off now, have had enough for one day! The sleeve really cuts in where my arm bends at the elbow and have been left with quite a sore red mark and that's just after one day!! Hope this cutting in won't make the lymphoedema worse instead of better, I got funny shaped arms lol.
Do you wear your sleeves all day everyday or do you take them off and if so when do you take them off, the lymphoedema nurse wasn't much help tbh although she was very nice she is also very young!

Member

Re: Feel like my life is over

Hi tigerlilly,I'm so sorry you feeling s---y I felt the same when told I had lymphoedema but it must be so difficult with you being a nurse, really feel for you.I also have lymphoedema on my right side and am right handed and to begin with found it very annoying, difficult and upsetting and can so relate to having to take the glove off and roll back the sleeve when wanting to wash my hands,I had a cleaning job and I used to have to buy two packs of rubber gloves one medium pack and one large to fit over my glove and sleeve.

I had to wear a sleeve with the hand piece and a separate gauntlet,a silky like glove that really irritated in between my fingers and it felt like my arm and hand didn't belong to me.I was able to stop wearing the silky glove after about 6 months as my hand returned to normal and now just have the sleeve
Sorry I haven't got any good advice.

Best wishes Melxx

Member

Re: Feel like my life is over

Hi Tigerlilly

Just read your post and really feel for you.

I was completely gutted when I was diagnosed with lymphodema. It felt almost as bad as the cancer diagnosis which seems silly but I think it was because I thought I could never appear 'normal' again.

I'm a few months on and I'm getting used to it. I wear an all in one sleeve/glove which is a pain too. I love to cook and wearing other gloves over the top just doesn't work. I often take off my sleeve when I'm cooking.

To wash my hands I roll the glove part back - this might be easier for you too than having a separate sleeve and gauntlett? Perhaps worth trying.

I think your job makes the hygiene issue so much more difficult. I do think that you need more advice from your lymphodema nurse on that side of things.

I hope you feel lots better about things soon
Elinda x

Member

Re: Feel like my life is over

Hi, have you thought of phoning the helpline? They may be able to put you in touch with one of their volunteers who has personal experience and is able to share with you. I am very sorry it's so tough for you at the moment and hope more support from here will come your way. X

Member

Re: Feel like my life is over

Thanks Nicola, I was starting to feel I was invisible lol. Hopefully I will get some replies giving me some advice about how they have coped! x

Member

Re: Feel like my life is over

HI Tigerlilly, so sorry to hear sorry you've developed lymphoedema - I'm just bumping this up cos I know there is a thread that a few people contribute to - might be called gloves, corsets and stuff - or similar - anyway the lasses on there know everything there is to know, so hopefully they find you or you find them, bw Nicola

Member

Re: Feel like my life is over

Forgot to say.........I would be grateful for any hints and tips and advice from anyone who also has to wear a glove and sleeve especially if it's on their dominat side, eg how do you manage preparing food? going to the loo? eating your sarnies?
What would happen if I rebelled and said I'm not going to wear it because to be quite honest my arm is aching much more today than before and it hasn't even stopped it from swelling.

Member

Feel like my life is over

sorry to anyone reading this as I am feeling sorry for myself today and am on a downer following diagnosis of lymphoedema in my right arm and hand.
Today I was fitted with the sleeve and glove which I absolutely hate already, how do you manage with it? The sleeve cuts in at my inner elbow and feels sore, as for the glove...... going to the toilet was a mission as I had to take the glove off cos of not being able to wash my hands.......even eating lunch was awful as I had to take the glove off because it felt dirty. Opening the car in the rain made it wet etc etc etc. I could go on forever.
My job is a nurse is now going to be nigh on impossible as I can no longer pracise safe hand hygiene and it's all I've ever done for 30 years.
I'm a single parent, I have no family left except my 2 sons. My hair is not growing back properly 7 monthes after chemo i am still having to wear a wig,and I can kiss goodbye to ever having a love life again!!
Life's so shit at the moment and then I feel guilty for feeling this way because there are many people out there worse off than me! No one understands what we're going through unless they've been there themselves.
Sorry to rant but had to get it off my chest and I'm sure my mates are sick of hearing it all.
Tigs xx