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Annie22
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since
01-05-2012
236
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24-12-2011
10:12
Trying to find out the extent of this problem, which is mentioned as a slight risk in literature about cancer. Is it rare? or are more people getting these, but they're not being reported?
I'm being kept in hospital over Christmas, so want to raise awareness as I should have done something earlier. So, best way to do this is to gather info in one thread
Grateful if anyone who has had a clot to share your experience of symptoms and what the treatment was.
Thanks
Annie
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24-12-2011
09:48
Very inspiring and I so NEARLY keep getting to the same place myself. But, back in hospital for my third Christmas in a row - this time with a blood clot up my arm and round the portacath. Still, it will be fixed soon and I hope I can join you on the plateau, away from the edge of the cliff soon.
Happy Christmas to all those on this site, and running the site who keep us sane and not lonely.
Annie
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24-12-2011
09:37
I would also urge you to speak to your doctor as it could also be thrush or an ongoing low-grade infection, which will need antibiotics. Also, you want to rule it out as you don't want to risk hubby getting the same thing if you do feel brave enough for sex!
It may not be, but make the appointment, write down exactly how you are going to explain the problem and practice saying it, so you feel confident when you are facing the doctor. It will be easier than you think.
Good luck and hope you are more comfortable soon.
Annie
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23-12-2011
09:50
Don't know if this is encouraging, but I know I had a terrible time and life stopped for me. I know I couldn't taste anything and my legs and arms hurt. My eyes were bloodshot. Even a cup of tea turned to metal in my mouth. I told my husband that if this was 'living' with cancer, I couldn't go on.
BUT, I know this, because my husband has shown me the pictures, my Macmillan Nurse has told me and my friends still tell me 'You looked so old and awful'. Otherwise, I really really have forgotten the details. It seemed like such a long time ago and it was only last April.
It will seem an age away for you to see the future and it is so difficult to believe you will feel well again. I do feel for you, but just accept everyone's love and support, and go easy on your expectations of yourself, but you will get through to the other side.
Happy Christmas
Annie
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23-12-2011
09:28
Although I know it is rare; I thought it might be useful to share this, so that if you have the symptoms, you can rule it out. IT IS RARE, so please don't get alarmed this is for info.
I am on Tamoxifen and Herceptin and have terribly tiny veins - hence a port-a-cath was fitted.
After my cancer came back in my recons. breast (within 6 mnths), I had some more nodes removed and developed lymphoedema (in September this year). The lymphoedema suddenly flared up last week and I went to two A&Es (useless) called my lymphoedema specialist, but couldn't find anyone who had a clue or had got time to see me. On the offchance I walked into the breast clinic and amazingly, my breast care nurse 'found' my surgeon on his way back from lunch. I was given antibiotics. After 3 days it looked a bit better. It looked a bit bluish, but then it had done for a few months, and over the months everyone (lymphoedema nurse, physio, Macmillan nurse, oncologist) put it down to my bad circulation - and it wasn't that blue.
So, day 4, I got a call to say that my surgeon wasn't happy and wanted me to have an ultrasound.
Had the ultrasound on Monday. I was admitted to hospital immediately, put on a blood thinning drip. I had the portacath removed yesterday and am on injections and Warfarin; staying in over Christmas for regular blood tests to ensure the clot is dispersing safely. And also to be near the cardiac team in case.
So, all this time I have been doing exercises, wearing my sleeve and glove. It all seemed logical, but all I keep being asked why I didn't make more fuss about the pain. But girls, you will know that you get used to it and I assumed that this is what lymphoedema felt like.
My right bicep was 38cms, whereas my left was only 28, but again, I just went and got another sleeve fitted. (That fact alone makes me laugh, as WHY didn't I make more fuss? but we just don't as we get so used to things)
The vascular specialist has put the clot down to the foreign body in my thin veins and Tamoxifen - but, not helped by the compression sleeve. He doesn't believe I have lymphoedema.
Bad luck all round really. Anyway, I'll be fine now, but just wanted to share as I've never heard of this before, and thought you should know. The blood clot has such similar symptoms to lymphoedema and to 'cording' that I'd just accepted it.
Look out for
1. bluish tinge,
2. a feeling that there is a tight sinew from under your arm towards the hand
3. obvious swelling
4. the fact that it doesn't seem to be less swollen in the morning
5. the fact that a compression sleeve doesn't help.
A simple and cheap ultrasound will show any blockage if the operator is correctly skilled and is asked to look.
Happy Christmas and look after yourselves
(and typed with one arm!)
Annie
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22-12-2011
07:13
Thanks norberte.
I write this in hospital after op this afternoon to remove portacath. I'll be in over christmas. the problem? I didn't and never have had lymphodema - I had a blood clot under the arm right up to around the portacath, but presenting as Lymphodema.
Over the past months, I have seen two Lymphodema specialists - one bupa one and one NHS, I have had sleeves and gloves fitted and exercises. I may have cellulitis, but due to the congestion of the clot.
I think it has been building up for months as the arm has been getting worse.
I am on blood thinning drip and may need to take Warfarin for life.
I think there needs to be more awareness of this. I have been taken off Tamoxifen as clots is one of the risks. I'm sure it is rare, but I have a good diet, don't smoke, don't drink and exercise with no clotting/heart history in family, so it is worth people knowing about, so they can eliminate it if their lymphodema gets worse. A simple (and cheap) ultrasound eventually picked it up.
Anyway, I'll be OK - but just thought fellow lymphodemaists should know
thoughts to all and thanks for support
Annie
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16-12-2011
06:57
Sloggi ones with no fastenings. You can step into them or pull them over head if you can get your arms up. Also, don't forget about vests with built in cups - v comfy for night.
Annie22
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16-12-2011
06:17
Just got cellulitis in arm and feel really alarmed. It is unusable and very fat. I had no cut or scrape but did knock it into a head of a nail protruding from a wall, but the compression sleeve saved it from a cut (i did rip the jumper I was wearing).
Started taking antibiotics on Weds evening.
Mizzy, aroma: is there anything you suspect sets it off? I read Mimsy's suggestion somewhere (I think) that it could just build up over time and we only notice when it gets infected. Sounds feasible to me as thinking back, it hasn't actually been comfortable for a while -even though on the day I had it checked 10 days ago it looked OK.
Can anyone out there to give their experience of how long it takes for the swelling to go down, and how did you judge when to wear your compression sleeve again?
Annie22
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13-12-2011
06:18
Thanks everyone for your support and the really great info about the exercises - I'll order the dvd. Just to let you know, I went to GP, who referred me to A&E. On the way to A&E I met my Macmillan Nurse, who miraculously found my surgeon!
They took a look and said that the 'blue' colour looked like that sleeve and glove were too tight. 'Something' had made the arm swell, and putting the sleeve/glove over a swollen arm is bad (I thought it was good, but apparently not if it has increased in size from when you were measured).
So, I have a tubigrip on the arm now and have to wait to see what happens in the morning. It's b***dy painful, but at least it isn't as blue any more - and it hasn't increased in size any more, so that's good, as it had got big enough.
Elinda, I'm determined mine will be fine after this little difficulty, but this has taught me to be a bit more careful. I am the sort of person that 'hopes' things will get better, so yours is a good lesson as you actually did something about it and I will too
Thanks everyone
Annie22
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13-12-2011
10:48
Really pleased to hear this, so thanks for sharing.
Can I ask how you found out about 'drainage' that you say you do every day? I have been seen by an NHS specialist who fitted me with a glove and sleeve, but have got no instruction on drainage (other than an offer for MLD in 6 months time). My mild case has now become much worse - even though I've been wearing the compression sleeve and glove every day for 3 months. My arm is purple this morning and so painful. I'm typing with one hand and can't even touch my hand to my shoulder now as the arm is so swollen, and can't hold a pen to write.
Called the clinic this morning and was told to go to my GP. Or someone can call me back on Thursday. I'm not overweight, I run ever other day, work full time and finished rads in August.
I'm worried about a blood clot as it looks so purple. Let me know about the drainage. Any other tips welcome.
Thanks
Annie
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10-11-2011
03:25
Elinda,
I feel just the same; I look forward to going to bed because I am convinced I'll wake up the next day feeling 'normal' - and it doesn't happen. People say I look good, but I am fighting all day to keep going. I have given up exercise as I think this is causing more stress to my body and have decided just to do what I feel like and remove the 'should'. B*ll*cks to 'you really should do X,Y,Z!
I have decided that it is wintery and getting colder, so I am going to go with how I feel and hope that in Spring I will start to recover. My journey started with an mx October 2009 and treatment finished in August 2011 and still on Herceptin and Tamoxifen.
I've never fought cancer; it has always been the fight against the drugs and this seems to keep going. So I will be a tortoise for a bit; give in...and will start making an effort again in Spring.
Love to all fellow tortoises
Annie
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10-11-2011
03:14
Mine aren't as bad as yours, but they are stopping me sleeping as I am tossing around throwing the covers off and feeling agitated. Then during the day it feels like I have 'flu - the sort of hot you get from that. I feel as if everyone must be able to see my face going red, but my skin doesn't feel hot even though I think it is. I've tried taking my pills at different times of the day, I"ve tried drinking more water, less fat, more fruit etc. But the one thing that does make a difference for me is stopping tea. I tried it over two days and the result was very quick (I also tried de-caf tea, but that didn't make a difference). I LOVE tea and so go without it, then allow myself a cup and live with the consequences. It is best for me to have it in the morning (I take my tamoxifen at 5pm)
I also read here (about 6 months ago) that someone was told that tea and tamoxifen should be kept well away from each other. I wonder if it is the tannin (not the caffeine) as I can still drink coffee in moderation.
Anyone else have any thoughts?
Annie
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25-10-2011
03:54
..just another thought. If you're getting flare ups and swelling then the sleeve should be worn all the time for maximum benefit - and even in the heat, it should still be worn, and even if you think the swelling has gone down.
So, if you are finding it uncomfortable, maybe it needs to be remeasured, or it can be made in more 'breathable' material. It was a friend of mine who is a physio who 'told' me to be more demanding as it didn't occur to me that one could actually be comfortable wearing this 'armery' (to quote Mary Portas's new range of 'tights' for the arms!). It took me three goes before I got a sleeve that was comfortable (although I have to put it on with rubber gloves to get it over my arm!).
(and by the way, I treated myself to some black lacy Charnos arm wear to cover the compression garment for when I am wearing short sleeves and it works really well)
Good luck all
Annie
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25-10-2011
03:36
I'm sorry if this reply doesn't apply to you and doesn't help you and I'm sorry that you are having such a sad and difficult time.
On a practical level, have you got the benefits you should get? I didn't realise that I could get anything for being ill as I've never had to claim and don't understand the complexities, but I ended up with something called Employment and Support Allowance of £99.85 per week. You have to have been working and paying NI, but if you have, then it is worth asking for. It can be backdated too. I just went to the local job centre and they gave me a phone number and it was all done over the phone with a letter from the Macmillan nurse to confirm diagnosis. It will continue to be paid until your doctor certifies that you are able to go back to work.
Annie
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25-10-2011
06:11
Yes, handwriting and using the computer are the worst things. Lifting heavy boxes makes no difference to me (but don't recommend you try this unless you feel like it!). I say that as someone who moved house two days after finishing rads. It seems to be the small movements that cause the problems (including knitting which I tried to do whilst I was recovering as it made me sit down), and anything that involves just the fingers or hand, whilst the body stays still. If I were to leave my sleeve off and use the computer/write), I would loose the use my hand really quickly. (First day back at work, I sat in a meeting and jotted my notes for two hours, thinking I didn't really need the sleeve! Idiotic thing to do as it took a week to get the symptoms back under control)
Annie22
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25-10-2011
06:00
Maybe an unhelpful comment, but have you tried swimming? The compression affect you get from this is as good as MLD in my experience - although mine is throughout the whole arm. Even after one swim, I noticed the difference. I work full-time and long hours, and wear a sleeve all the time. At the end of the day when I've been at the computer or writing, my arm is swollen and painful. My Bupa physio suggested swimming which she explained as 'you know how many people need a wee when they go swimming?'....'well, this is the fluid in the body being compressed and needing to escape'. Sounded mad to me, but the relief was instant.
However, I'm not as disciplined as I should be and fitting swimming in is difficult, but there is nothing better to instantly improve that horrid heaviness.
Annie
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31-08-2011
03:11
Amazing! I wasn't looking for this, as I had just come back on to 'look around'. I have irritating little blisters around the edge of my tongue, but I also have the feeling of a lump in my throat and tightness around that area. I know it isn't another cancer, but I wondered if anyone has this too.
On the question of Tamoxifen after menopause (which someone asked, but I can't find it) my oncologist said that she prefers to put everyone on Tamoxifen for two years, just to establish whether they are really post-menopausal or not (as the effect of chemo can skew the test results). Then, if after two years it is clear that the patient really is post-m, she switches them to Arimidex.
I'm off to try all the suggestions in this thread!
Thanks
Annie
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28-06-2011
12:45
I'm similar to you; complete response and am having radiotherapy.
You asked about why chemo wasn't enough: The reason I was given was that chemo kills the cells at a certain stage of their development (hence the importance of cycles - a bit like the kids nits, doing them repeatedly to kill off the eggs - if you see what I mean!), but the rads will kill off any rogue cells kicking around that were at the wrong stage to be hit by the chemo. It is unlikely but it is belt and braces.
Not sure of the technicalities, but it made sense to me
Annie
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28-06-2011
12:16
People who ask are often quite happy to hear the truth - and so I give it to them (OK - edited highlights!), but I really do feel that the more we explain what is going on and how we really feel, the more cancer becomes more understood.
I had to earn some money (am sole wage earner and freelance, so no income), and went to a meeting in a swanky city office today. It was sweltering, but a suit is compulsory so went with no hair or hat. I was worried that I looked a bit shocking - and as they were new clients no one had met me before. Everyone was lovely and actually I realised that so many other people have so much going on in their lives that they never mention, and once I had explained the lack of hair, they opened up to me at the coffee break. Out of 10 people, one lost a 6 week old baby last year, one's son had just finished chemo (aged 4), one's wife was very ill - and none of their colleagues knew any of this as we all keep things quiet (they were all men)
So, if someone comments or asks I really think it is fine to say how you feel as one day, they will know they can say the truth to you. Also, with 1 in 3 getting cancer, they are unlikely to get through their lives without someone close getting it, and maybe having some idea might help.
Annie
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