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So angry and it's making me cross with myself

23 REPLIES 23
littlemrs
Member

Re: So angry and it's making me cross with myself

There is also this company that import sleeve covers and a % goes to BC and lymphodema charities http://www.mytattoosleeves.co.uk/
I've bought a couple of designs from them. Maybe draw attention to the sleeve rather than hope it will blend in and disappear from sight?!

moorcow
Member

Re: So angry and it's making me cross with myself

Hey Goldie,

I was totally livid and also very deeply upset when I got lymphodema 18 months after finishing my treatment. My mates couldn't uderstand how upset I was, but it felt to me as bad as a recurrence. But I have had some fabulous support from local lymphodema service, and I now do 99% of what i want to and i wear a sleeve probably 5 days out of 7. I am super careful about some things but you know its just become a habit so its not so much of a drag as I used to feel it to be.

I got some funky sleeves from chic compressions who get them from lymphdivas in USA and they cheer my up no end - have got a great one that looks like a full arm tattoo - got some compliments of a fully tatooed guy in manchester yesterday!!!!

sending you very best wishes, and I hope it helps to know my fury and deep sadness settled as i got used to managing the lyphodema and not letting it manage me. M

lottie63
Member

Re: So angry and it's making me cross with myself

Hi Twinks, I have lymphodema in arm and breast and I wear a full sleeve everyday it has become part of my wardrobe now !! I am having the microsurgery in May on my arm so hoping this may not be the case forever, There are websites that do some beautiful sleeves they do all sorts some look like tatoos some are lacey, bit pricey but hey ho, just google compression sleeves and they will appear hope this helps x

Twinks
Member

Re: So angry and it's making me cross with myself

I had a wle four weeks ago, and my oncologist told me I'm unlikely to develop lymphodema as only three nodes were removed, but a friend who has it wears a sleeve and really you can't notice it..do they come in different skin tones? Just a thought...don't know if any of you have seen the images of mastectomy tattoes, some are fabulous and you don't even notice the lack of a breast.  You can get walking sticks which are brightly patterned or coloured, so why can't someone develop sleeves which are a talking point because they are beautiful, rather than being merely functional? Come on ladies, get your thinking caps on, you could make many women happy and make yourselves money into the bargain.  (I'm hopeless at anything to do with design or I'd try myself!).  I hope everyone suffering at the moment can come to terms with it before they commit murder on the next person who comments on the sleeve.

Goldie112
Member

Re: So angry and it's making me cross with myself

Hi KLL
I'm just sending you a big hug.
It's awful that you're struggling with both arms.
Are you getting support and treatment?
I find my breast cancer nurse to be really helpful and hopefully there are lots of options to explore. I hope you're finding the posts useful I know I did. I also find that, like everything, time helps get your head round things and you can learn to manage the lymphoedema - I do the daily massages and wear my sleeves every day and I think that definitely helps. Sending lots of love
G x

Guest user
Not applicable

Re: So angry and it's making me cross with myself

Hi ladies, I am new here and have just been reading your posts. I developed lymphodema almost immediately after my mastectomy. I had read the leaflets as you do, and scanned over all the information, thinking it would never happen to me! Wrong! 😞
I had 17 nodes removed from under my arm, so I guess that hasn't helped? I just feel like I wasn't told that the more nodes that are removed the greater the risk. You know so much after the event! Too late then.
I have had to endure all my chemo, blood tests and treatment in hospital in my other arm, I now have an arm full of thrombosis, there are no veins left, my arm is tunnelled and feels very tight.
So both my arms are now ruined 😞 I'm only 45 and have an active 6 year old boy at home, I feel like a cripple some days and most of all I just feel so very sad. Sending hugs .... K xx
Goldie112
Member

Re: So angry and it's making me cross with myself

Thanks Erin, my oncologist and breast care nurse suggested doing it through the gp. I had my first session the other week and we have the bank holiday now but I think when I went through my list of things it blew her mind a bit.
I've got a check up in another week so I will ask my oncologist then. I'm really glad the counselling has worked for you xx

Guest user
Not applicable

Re: So angry and it's making me cross with myself

Hi again Goldie,

Most of the counselling that a GP has access to will be time limited (eg 6-8 sessions), and the counsellor will not necessarily be that familiar with the effects of going through cancer/lymphoedema. It's also usually CBT. However,  If you can access counselling through your local cancer support centre, or via your breast care nurse, you are more likley to find someone who specilises in this area, and they are less likely to be time limited. The issues you are dealing with, eg the infertility, early menopause, worrying whether you have a future, lymphoedema,  are  all too common in younger women after BC, and it does take time to deal with everything. I've been lucky enough to have had counselling for over 18 months at my cancer support centre, and it's taken that long to help me to come to terms with things. It's been so worthwhile. Many people find it harder psychologically post-treatment than during it- I found that hard to understand before I had cancer, but know only too well now! 

And by the way, don't expect your GP to know anything about lymphoedema- It's dealt with soley in secondary care.

Good luck!

Goldie112
Member

Re: So angry and it's making me cross with myself

Hi All
Thanks for your comments. I really do appreciate them all. I think just bring able to talk about it has really helped. I had been holding it all in and posting here and talking to my OH ( which I had been avoiding as I felt he'd been through enough already) has lifted the cloud. Funnily enough when I went to see my gp about treatment I also asked about counselling as I knew this would tip me over the edge. I have been having a cycle of thoughts which kinda go, oh my arm is swollen, Oh yeah I had cancer, it coincides with a hot flush which reminds me I'm in the menopause that's made me infertile and I can't have kids, should I try other options, well probs selfish to, as you're going to die young anyway, ooh arm's aching, what if there's permanent damage and you can't manage it as you get older, dont worry about that you're not going to get much older anyway....
Apologies for the lack of punctuation but I'm posting from my phone.
However I am feeling less like this after talking to you all and it's so great to hear all your different perspectives, so thanks so much for helping me through xxxxx

Guest user
Not applicable

Re: So angry and it's making me cross with myself

Hi Goldie, My lymphoedema (right arm, trunk, breast, both legs) was diagnosed about a year ago, just 5 months after stacked bilateral TUG flap reconstruction and full axillary clearance. I had had a very stormy course through chemo, as well as the surgery, when I ended up going to theatre 4 times in a week due to complications. Right from the first day of my cancer diagnosis, the thing I most wanted to avoid was lymphoedema, as I knew that would have a devastating effect on my career (in the NHS- Infection control rules means you have to be bare below the elbow for clinical work and therefore can't wear a compression sleeve). Like many women following BC treatment, lymphoedema isn't the only thing I'm having to adjust my life for- I also have residual peripheral neuropathy from the chemo, and despite intensive physio, I have restricted chest/shoulder and hip movement, and I have neuropathic pain in my chest wall as well as pain from fat necrosis and adhesions. I was 38 at diagnosis. Your anger is only natural, as we all think through our treatment that once we've finished, life will go back to 'normal'. For many of us, this just isn't the case. What really helps me manage it all is the thought that I am paying an acceptable price for being alive. Lymphoedema management has moved on a lot in the last decade, but the most important person in managing the condition is yourself. If you persist with the exercises, guidelines, SLD, compression (as appropriate) you can do so much to help yourself. With time, you'll find ways to get over some of the restrictions lymphoedema can impose, and it will just become a natural part of your lifestyle. I know many people have commented on this forum that they 'hate' their sleeves, but I actually love mine, as from day one they made my arm much more comfortable. I would highly recommend having counselling- This should be available either through your local cancer support centre, or otherwise ask your breast care nurse. You may also have a local lymphoedema support group- Ours meets twice a year. A year in to my lymphoedema, I've retrained and work in an environment which allows me to wear my sleeve, and I can honestly say I'm happy. So whilst lymphoedema may need long term care, have hope that in time you will come to live well with it. Every time I look at myself I am reminded how lucky I am to be alive, and I'm focusing on making the most of that life.
bernadetteh
Member

Re: So angry and it's making me cross with myself

HI Goldie, I'm on my third diagnosis of BC and when I ahd my first diagnosis my Surgeon advised removing all my node, on the affected side. I questioned this, as I told him I was worried about Lypodema, as my Mother had this after having BC. He said to me, "you have 30% risk of Lypodema and 6% risk of a recurrance coming back in your nodes and if it does, it's very difficult for us to deal with." On his advise I had all nodes removed on my right side. On my second diagnosis I had them all removed on the left side. This third time I again have aggressive Grade 3, but no opportunity for the cancer to have spread to my nodes. I do have slight Lympodema, but I'm grateful for his advice, as otherwise I could be facing that nodes are affected and difficult to deeal with. Take care & try not to be annoyed with yourself x

elinda45
Member

Re: So angry and it's making me cross with myself

I think most people really have no understanding of  lymphoedema.  They see a sleeve and think that's it.  They don't get all the physical and psychological things that go alongside a diagnosis nor do they get that it is a constant reminder of the cancer diagnosis. 

I'm constantly staggered by the insensitivity of people in workplaces.  You don't expect people to know what it is like but you do expect them to ask and try to understand not make ridiculous stupid statements. 

 

I went to a market today and the first thing the women at the stall said to me was 'oh what have you done?'  I wanted to scream at her because I don't want my sleeve being the first thing people are looking at.  Three years down the line and I still don't know what to say when someone asks out of the blue like that.

 

Goldie - I think the feeling of what could I have done differently is something that many of us feel.  I had a terrible seroma after surgery which went on and on and I think was made worse because I'd had chemo first.  Sometimes I sit and think that if I'd had surgery first I might not have had the seroma and then I might not have had lymphoedema.

But it's not our fault.  We rely on our doctors to advise us and I honestly believe they do what they believe is best for us.  Even with the removal of one lymph node you may have developed lymphoedema so that was no guarantee in itself.

 

take care

Elinda xx

Goldie112
Member

Re: So angry and it's making me cross with myself

Thanks Zeppa, it is good to talk to people who have gone through/ are going through it. Sorry yo d had such a difficult time xxx

Zeppa
Member

Re: So angry and it's making me cross with myself

I gather it's not what you want to hear, Goldie, but all I can say is the same: I was really angry when I got lymphoedema. I didn't get it in the arm, but in the breast and side, and it took me ages to understand why I had it. I had a huge amount of my breast removed and a lot of radiotherapy, and the radiotherapists say it's their fault. But lymph drainage specialists tell me a mastectomy wouldn't have avoided the problem. I don't understand that. I couldn't have a mastectomy because the hospital gets judged on how many mastectomies they avoid. I had two tumours and some DCIS, all caught quite early, but covering a big area. I was angry for a few years on the little interest that treatment in the years after OP, chemo and radiotherapy gets. My gyn knew I had lymphoedema but didn't think it could be treated in the breast, so it was a year before I got treatment. Then I couldn't find a doctor who understood what lymphoedema is. I even went to a specialist clinic for three weeks (I am in Germany) and got a new doctor who prescribed me a sleeve, which the senior doctor said I didn't need, but ignored the breast.

 

The thing I really hated was the thought that for the rest of my life I'd be dependent on doctors and therapists!

Goldie112
Member

Re: So angry and it's making me cross with myself

Well they just sound marvellous at your work! What a nightmare! Hope you're feeling a bit better now. I had a similar conversation last week (before I'd told anyone about this) with my md asking how I'm feeling now and then looking surprised when I said I still feel tired! It's like you're supposed to be just completely get over everything straight away. I just had a big cry and told my OH everything I was feeling today which I think shocked him a bit. Problem is he keeps wanting to fix it, which he can't and that's the problem you can't fix it and its freaking me out. He thinks the chemically induced menopause and tamoxifen might be making me feel so hysterical. I'm just constantly on the edge of tears. It's ridiculous. X

Rattles
Member

Re: So angry and it's making me cross with myself

Hi Goldie,

 

I just wanted to say that I find it just as hard to cope as anyone and I really do hate that expectation and pressure to not only cope with all the effects of cancer treatment, but be positive- as if it is not enough to have cancer to deal with, we also have to come through smiling! Yeah, right. To give you an example, I had some coaching at work as I am finding it just hard to manage the demands and expectations of others (and myself) and I was talking about how hard it is (to write, type etc) and how I hate the reactions of people to my sleeve ('Oh, I do like your sleeve'  to which I go 'uuhh?') and was basically asked why I had not come to terms with it after 9 months! I  wanted to scream and though I did patiently explain that this was not a great deal of time to come to terms with a life-changing condition, I left and cried in the toilet as I just felt a total failure. I think we all have our lows, but I was hoping to show you that it also does get easier.

 

Keep in touch, Rattles x

Goldie112
Member

Re: So angry and it's making me cross with myself

Thanks Lacuna, I think the reaction is fairly normal but that's not really making me feel better. It's as if I used all my positivity up on the surgery, chemo, radio etc and now I can't seem to muster any more!
It's great to talk to people who have gone through it though as I don't think anyone else really understands xxxx

Guest user
Not applicable

Re: So angry and it's making me cross with myself

Hi Goldie112

 

I just wanted to say that you sound exactly like I did when I developed lymphoedema last November. The thread I started is probably about somewhere. Like you I was so angry, and angry at myself for being angry, and I didn't want to have to deal with this on top of everything else. To be honest I am less angry now but still resentful and have found it hard to fully come to terms with it. Instead I am just hoping that a cure will become available soon because I still struggle to comprehend that this is meant to be forever. In time you adapt and managing it becomes part of your daily life, but that doesn't mean you grow to like it! I hope things start to improve for you soon. Take care.

Goldie112
Member

Re: So angry and it's making me cross with myself

Sorry Rattles also meant to say, I'm so sorry to hear about your situation too. Sounds like you are better at dealing with it than me though. I would suggest we could use a punch bag only it would probably over exert our blooming arms!!! Xxx

Goldie112
Member

Re: So angry and it's making me cross with myself

Thanks Rattles. It just feels a bit like the straw that broke the camels back. Also it's one of those things that people don't understand and don't think it's a big deal in comparison to the cancer stuff.
I feel like a child, I don't want to be told its manageable and to positive, I'm so sick of being positive about horrible things that I want to stamp my feet! It's so not me, I feel like I can't be happy and I'm being moody and snappy and on the verge of tears all the time. Bleugh.

Rattles
Member

Re: So angry and it's making me cross with myself

Hi Goldie,

 

I just wanted to say sorry of your recent diagnosis. It is hard when you go back and look at past decisions/events with a feeling of regret. It's hard I think when the 'cure' takes away quality of life. I have had clearnance both sides and developed lymphodema in the 'lower' risk arm and it is baffling to everyone as also my 'unaffected' limb has a higher total volume despite larger measurements in the lower arm. There is no 'right' way to feel and I understand your anger. I was devestated when I developed lymphodema and the way I look at it was that getting through the treatment had just taken so much from me and it seemed so unfair. I think that there is a lack of support when you are first diagnosed so you feel quite alone. I have had some good tips from ladies on the forum and learnt lots of ways to manage my own lymphodema. Even though I wear an all-in-one glove/sleeve which I hate bitterly, I have learned to cope and the swelling has gone down. I am rambling on but think you just have to keep on venting!

Rattles

Goldie112
Member

Re: So angry and it's making me cross with myself

Thanks Jo.

Jo_BCC
Member

Re: So angry and it's making me cross with myself

Hi Goldie112

 

I'm sorry to hear you're feeling this way but you've done the right thing by posting here as I am sure your fellow forum users will soon be here supporting you.  In the meantime I have put for you below the link to BCC's publication regarding lymphoedema which I hope you find helpful.  Also if you give the helpline team a ring they'll be only too happy to talk to you about your concerns.  Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2

 

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/living-lymphoedema-after-bre...

 

Take care,

Jo, Moderator

Goldie112
Member

So angry and it's making me cross with myself

Hi all
It's been ages since I posted as I finished my treatment last July. Thought I'd been ok but just been diagnosed with lymphedema and feel so miserable and angry and sad I don't know what to do with myself.
It was the main thing I worried about whilst going through chemo and radio as I knew I would feel like this. I want to snap out of it but I also want to rage about it and I just don't know what to do with myself. My cancer had spread to one lymph node but it was v early and the surgeon didn't seem to think they should take them all out but my oncologist said just to get it out and despite the fact I didn't want to I went along with it.
I know, like everything else that's happened I will come to terms with it but its really upsetting me and I feel like I can't cope. Sorry for going on.
Xx