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Amero
Member
since
02-01-2016
68
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16
Hugs
11-07-2019
09:44
I also have a brain condition that was not diagnosed until after my cancer treatment so I am under a neurologist due to that. In fact my neurologist is lovely and restores my faith in doctors - within 5 minutes of knowing I was in hospital and my situation on the ward he was by my bedside and I know how busy he is. I have a neurophysio who I see every 2 weeks is also fantastic although it is often 2 steps forward, 3 steps back. I think this is why I am so disappointed in the breast cancer services at the hospital which are so insensitive, cold and thoughtless by comparison to all the other hospital services I have encountered. My hospital ranks very poorly for its cancer services nationally statistically so it may well be that staffing is the problem.
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10-07-2019
07:45
In all honesty one of the hardest things to take has been the borderline callousness of both surgical team and some of the nurses on the ward in hospital. It's sat in such contrast with the empathy and understanding I was shown in 2015 by the chemo nurses and oncologists. It's felt like because I am 'only' having surgery this time it's supposedly not a big deal. But the cancer has come back and I have had 4 years of serious illness and at times live threatening situations and this is at the end of that. And that I am disabled by my health despite being relatively young. And this time I am losing a breast and I did not even have a choice about reconstruction. And I was also really ill after the operation. There seems to be a lack of understanding of any of that. It's treated as just a minor thing like I'm just going to have a cyst removed and have never stepped inside a hospital before.
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09-07-2019
06:14
Thank you Seabreeze for your kind words and suggestions. When I asked I was told I should go to my GP or pay privately. My GP advised that the waiting lists are so long I would be better to try a local charity. I have managed to find one, but not surprisingly it is oversubscribed but at least it only has only a 7 week waiting list. As someone who is housebound due to my disability I am unable unfortunately to take part in support groups so this I believe is my only route. I have however used the helpline which has been invaluable.
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07-07-2019
03:28
I was initially diagnosed in 2015, had an axillary clearance and local side excision, chemotherapy, dad's and herceptin. I have had numerous health problems since then including lymphodoema, cellulitis, neurological problems and sepsis which have left me disabled. At the end of April I was diagnosed with a recurrence of the cancer and I was given a bone and CT scan which confirmed it thankfully had not spread beyond the breast. I made an appointment with a reconstruction surgeon who told me no reconstruction could be done due to my previous scar damage, lymphodoema, and neurological condition -I was devastated. I had then only one appointment before my operation with the BCN to discuss the mastectomy (although I had to wait two months for my operation without seeing anyone) and will have a post surgery appointment with the surgeon and a prosthesis fitting appointment and that will be it. No counselling of any kind offered. The surgery was supposed to be a day case ( despite me also having a breast reduction), but due to a reaction to the anaesthetic I was in 10 days. Another surgeon (not mine) had a go at me on the ward for taking up a surgical bed because I could not walk and said I should be in a cottage hospital. It seems that the health service trivialises this operation. You feel like you are on a conveyor belt -your breast removed and pushed out the door and left to get on with it on your own. I don't know when I am ever going to get over this but I feel brutalised by the system which does not seem to see you as a person.
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13-10-2016
07:19
Hello Kary. You absolutely have my sympathies. I have always had large breasts -prior to surgery I wore a 32GG. Not sure whether this is the reason why my lymphoedema is in my breast rather than my arm. Nationally it is a bit of a post code lottery as to what lymphoedema clinics are available and how soon you get referred. I was lucky and my clinic has a nurse the specialises in breast MLD but many clinics just 'do' arms and legs and often that just means compression sleeves and the exercises you are told to do anyway. If you have breast lymphoedema MLD will really help as long as it is caught early enough so it is worth going to a private clinic if the NHS locally does not provide it. Also kinesio tape may help if you know how to apply it. Ask if that is available. You can buy it online once you know how to apply it. Unfortunately for me I am allergic to it -funny skin! Long term be very aware of the risk of cellulitis which can be very serious. You are very much more likely to get this if you have lymphoedema. Make sure you keep the skin clean and moisturise. If you feel unwell, have redness, heat and tenderness make sure you see a doctor. I have had lymphoedema since surgery in June 2015 and have had cellulitis twice. The first time I ended up in hospital on intravenous antibiotics so it can be really nasty. Wishing you well. While it will probably not go completely you can do things to improve it. Love Amero xxx
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13-10-2016
07:12
Hello Kary. You absolutely have my sympathies. I have always had large breasts -prior to surgery I wore a 32GG. Not sure whether this is the reason why my lymphoedema is in my breast rather than my arm. Nationally it is a bit of a post code lottery as to what lymphoedema clinics are available and how soon you get referred. I was lucky and my clinic has a nurse the specialises in breast MLD but many clinics just 'do' arms and legs and often that just means compression sleeves and the exercises you are told to do anyway. If you have breast lymphoedema MLD will really help as long as it is caught early enough so it is worth going to a private clinic if the NHS locally does not provide it. Also kinesio tape may help if you know how to apply it. Ask if that is available. You can buy it online once you know how to apply it. Unfortunately for me I am allergic to it -funny skin! Long term be very aware of the risk of cellulitis which can be very serious. You are very much more likely to get this if you have lymphoedema. Make sure you keep the skin clean and moisturise. If you feel unwell, have redness, heat and tenderness make sure you see a doctor. I have had lymphoedema since surgery in June 2015 and have had cellulitis twice. The first time I ended up in hospital on intravenous antibiotics so it can be really nasty. Wishing you well. While it will probably not go completely you can do things to improve it. Love Amero xxx
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02-07-2016
03:20
Hello On a diversion. Please don't be too anxious about the chemo and the herceptin. The vast majority of people will not have the pain and joint problems I have had. While peripheral neuropathy is a known side effect for taxane chemotherapy usually this is no more than some numbness in hands or feet, but most do not even get that or if they do it wears of in time. I still hope to get off my crutches, but even if I don't the treatment is worth it. The chemo shrank my tumour from the size of a tennis ball to the size of a marble -so it may have been bad forme, but that means it was bad for my tumour too! I was given the option of not continuing my treatment due to the side effects, but I chose to continue because knowing this was the best way to stay cancer free was more important to me than my mobility. I am just so thankful that I can look forward to seeing my little boy grow up. Love Amero xxx
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29-06-2016
10:13
1 Hug
Hello Tracey, I am wondering whether you also had chemo as part of your treatment. Like you I had herceptin (just had my last dose!) but also had docetaxel as part of my chemotherapy treatment. I started with pain and weakness in my legs when I was having chemotherapy (docetaxel) and herceptin at the same time. It continued to worsen after completing my chemo (June 2015). I am currently still on crutches but have seen some improvement in pain and weakness with exercise and strong pain killers. I am 43 (diagnosed when I was 41) and I feel pretty ancient. After lots of xrays and scans I recently saw a neurologist who has diagnosed me with motor neuropathy which he believes is due to the docetaxel rather than herceptin. Basically the treatment has damaged the nerves in my joints that control my muscles. But I do understand that docetaxel can also damage the muscles themselves and the joints as a whole. You are certainly not alone and since suffering myself I have met others similarly affected. Keep on pushing for help and diagnosis to improve and manage your pain. All the best. Love Amero xxx
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29-06-2016
10:11
14-06-2016
10:03
1 Hug
Finally had my neurologist appointment yesterday. He agreed with the oncologist that my symptoms are due to the docetaxel chemotherapy. He examined me and said I had significant weakness in my legs, but that I had weakness in my arms also -which was news to me! I know my hands are weak( I can't get the lids off bottles etc) but I guess the arms went unnoticed with everything else going on! He says he thinks I have motor neuropathy from the chemo. It is more common to get sensory neuropathy ( numbness, tingling usually in the hands and the feet). Going to have some nerve conduction tests as the next step. I had hoped to be off crutches by my holiday in August, but that's very doubtful now. Just there was more help with physiotherapy on the NHS for cancer patients like us. We seem to fall into abyss because we don't fit the standard side effects. Love Amero xxx
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28-05-2016
12:05
Hello All, I had the same, but it was dark and quite noticeable. It even grew in weird places like under my eyes, all over my neck and the middle of my nose and forehead! Not a good look. I bought an epilator and removed the lot. It hasn't grown back. Unfortunately only half of one of my eyebrows came back and as I have thick dark brows this looks rather odd! I have to keep remembering to fill the other half in with makeup. Love Amero x
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25-05-2016
08:01
1 Hug
Hello Claire. Your experience sounds very like mine. I have also been frustrated by the lack of advice and support from oncology. I am still awaiting my neurologist appointment (scheduled for June) -see my earlier post in this thread. I had all my pain meds through my GP as oncology didn't suggest anything! I am on amitriptyline at night, tramadol and naproxen. I have found the weakness as debilitating as the joint pain however -I am still on crutches and have been suffering since I had docetaxel over 12 months ago. I have seen some improvement though in pain levels and strength and mobility, which I mainly put down to exercise. I have been going swimming twice a week as I am lucky enough to be able to access a pool with a hoist to get me in and out. I have been doing the exercises I was given in NHS hydrotherapy and also doing something called water walking. You go out of your depth wearing a life jacket and then walk as though you would on land so obviously your feet are not touching the bottom as your are supported by the life jacket. I have also been using toning tables in a local leisure centre which move your limbs for you. This has improved flexibility and reduced my pain levels. No easy fix but it has helped and more importantly I feel I am doing something positive. It is also improving my overall fitness which is making me feel better. I do know what you mean about feeling ancient -I am only 42 and it seems weird that my mother in law and Mum who are both in their 70 s are so much more mobile than me! Nobody seems to be able to tell you if you will get over the joint damage from chemo so after a year on crutches I have finally applied for a blue badge. I have been successful in getting it and much as I would prefer not to have it my life is now a lot easier as a result. Wishing you all the best and hope you see some improvement. Love Amero xxx
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26-04-2016
07:26
Hi there, I must admit I see to have been very lucky in the chemo hair lottery as my hair has grown back thick and black (my colour when I was a child) despite being fine, mousey brown and somewhat greying before it fell out. The only problem is it is incredibly dry and poor condition so I am rubbing lots of Argon oil into to it in the hope it might improve. Just hoping the grey doesn't come back at least for a while! Amero xxx
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16-04-2016
12:33
2 Hugs
Hello Em, I agree with Vik. Speaking to someone might really help. I had counselling last year when my little boy was seriously ill and I had just been diagnosed. I became clinically depressed because I couldn't do anything about the situation with my son and while it didn't make the situation any better (nothing could) it helped me find ways to cope with what had happened to me and to my family. I hope you can get some assistance through Macmillan. I hope that life improves for both of you too. Love and virtual hugs. Amero xxx
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16-04-2016
12:17
Hello Jill. Thanks for the sympathy. I am feeling a bit better this morning, though my lymphoedema seems to have flared up in my breast, but it is too painful to massage yet. But it is not like it was when I had cellulitis so I am sure it will soon settle down. I ended up taking some morphine last night, which I have prescribed for my nerve pain in my legs, but don't usually use because it makes me nauseous. I had a tepid bath this morning and that helped. I think it would be a good idea for you to take some pain killers prior to mammogram. I don't know how bad your pain in your rib cage is normally, but I usually find anti inflammatories are most effective for that sort of pain. I take naproxen because I have pain all the time and it is longer lasting than ibuprofen. You have to be careful though about taking it with food. I also take omeprazole to protect my stomach as I take it all the time. I try to avoid taking tramadol too much as it can be addictive.I only take paracetamol with tramadol as it makes the tramadol more effective, but wouldn't take it on its own as it would be completely ineffective for the level and type of pain. I don't take codeine as it doesn't work for me -apparently some people don't have the gene to change it into morphine in the body and I must be one of those people and codeine is a nightmare for making you constipated. Funny to think that before I was diagnosed I didn't used to take any medication at all -now I think I must rattle! I shall definitely dose myself with tramadol before my echo on Monday -hoping I get the same radiographer as last time as she was really careful. Hi Joby. I am glad to hear your mammogram went OK despite you lymphoedema. I think it probably depends on where you lymphoedema is as much as how careful the mammo lady is -I am sure that the lady who did mine could not have been any more careful -she was lovely. I think probably I had a problem as much because of rib problems as the lymphoedema. But it is very reassuring for other lymphoedema sufferers who might be reading this thread that yours wasn't too painful. I think I have just been unlucky. Take care and best wishes, Amero x
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15-04-2016
02:09
1 Hug
Unfortunately I had the most awful mammogram this morning. Wasn't expecting it so had only taken the naproxen I usually take for the lymphoedema, rather than the tramadol I usually take for my nerve damage in my legs. When the mammogram lady saw the extent of the lymphoedema she moved me to a different machine. She couldn't have been nicer and did it all manually. Fine on my non lymph side -wasn't even uncomfortable -a smear test is worse. I can understand why some women find this a breeze. But when she did my lymph side initially I felt like I was going to be sick and when she did it under my armpit I nearly fainted. She had to quickly get me off and lying down. She said I had gone as white as a sheet. I knew it was going to be painful but I didn't realise it was going to be that bad. She said it is because of where the lymphoedema is, but it didn't help that I have acute pain in my rib cage (radiotherapy damage) and the plate was jabbing into the area where it hurts the most. I am still in considerable pain now -it was agony driving home. I had to sit in the car for a bit to wait for when I felt safe to drive. My hands wouldn't stop shaking. I wish I had had someone with me. I have taken a couple of tramadol and I intend to have a lie down. Dreading my echocardiogram on Monday -I hope things have settled down a bit before then as the last one was very painful because of where they have to put the ultrasound thing. It would be so great if they could invent something to replace mammogram s because for ladies like me who have constant pain and inflammation in the breast and ribcage it is just unbearable. At least I have a whole 12 months for things to settle down now before the next one. Amero x
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14-04-2016
05:24
Hello Nancy, Have you got a John Lewis close by? If yes then you will find that they have a range of soft cup bras and mastectomy bras and their fitters are trained to fit them. I have also heard that Marks & Spencer's fitters are good if you don't have a John Lewis. Best wishes, Amero xxx
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13-04-2016
09:38
1 Hug
Hello Em, You absolutely have my sympathy. Like you I have lymphoedema and some long lasting side effects from chemo ( nerve damage) but at least I don't have the agony of misdiagnosis and the potential what if scenario that you must keep going over in your mind. But where we both are is a new kind of normal -not the people we were before, but we need to find a way to go forward and make the most of the lives we have. Don't let this beat you -you do matter and you can find happiness even with the problems that you still have. Take small positive steps every day and be determined that things will improve in your life. You have been told that there is no way you can take the hospital's mistakes any further from a legal point of view so the only way you can deal with this without it eating you up is to try accept that there is no more you can do to right the wrong you have been done. It's not OK what has happened to you and is very unfair, but you need to find as a way to move forward and find ways to enjoy life again. Wishing you happy and better times ahead. Love Amero xxx
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13-04-2016
06:30
Hi Em, I just wanted to let you know that I have had my bone scan results back and there is no sign of cancer. Looks like it is radiotherapy side effects. I am glad that I got it checked out though. I hope you get similar reassurance too. Love Amero xxx
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13-04-2016
06:23
2 Hugs
Hi Jill, Just wanted to let you know and anyone else who has similar symptoms that I have had my bone scan results and there is no sign of cancer returning -I am so relieved! Looks like it is the side effects of radiotherapy. Love Amero xxx
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