Calling all triple negative breast cancer patients in the UK
Comments
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Oh Sylvia, sorry you are not feeling well. I was hoping you were taking a pleasant break. I probably spend more time on these boards than I should, but I like checking up on everyone. Hope you are feeling better soon!
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Slyvia, I'm so sorry, I'm so pre-occupied with what happened to our friends, work and getting ready for this trip I completely ignored the fact that you aren't feeling well. I sure hope you and hubby start feeling better soon,
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Morning Sylvia. Sorry to hear that you have been unwell. My friend from England was here for the last two weeks, recovering from an emergency hysterectomy.
You are so right about the increasing incidents of cancer. One of my main concerns would be, the speed at which this is hitting people and the increased ferocity.
Mccrimmom, enjoy your holiday. Rest and relaxation with the addition of culture is so good for the soul.
A good morning to all the ladies.
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So sorry you have been feeling unwell, Sylvia. I do hope you feel much better soon. The weather is warming up and there are signs of Spring here at last - hopefully the last of the nasty bugs will disappear with the Winter weather.
Wishing both you and your husband a speedy recovery.
With love,
Sam x
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Hello mccrimmon324, bak94, sam52 and BernieEllen
Thank you all for your kind words. I am slowly getting better but feel too tired to do very much except keep lying down. I do not feel my brain is functioning as it normally does.I have been thinking a lot about suze35 and Laurajane, but somehow we all have to move on. We must focus on all those who are surviving. I can understand, mccrimmon324 (Heather) that you are very excited about your trip. It will take your mind off of everything.
Are you taking metformin under the supervision of your GP but without the consent of your consultant?
Bak94, thank you for your kind thoughts. Make sure you do not get too involved with the threads. I do worry that they can take over people's lives. You must be approaching the end of your radiotherapy now. Take a good break afterwards.
Hello BernieEllen. I was so sorry to hear about your friend. I understand that it takes a long time to recover from just a standard hysterectomy. I do hope your friend will make good progress.
I feel there is something really wrong with the rates of cancer we have. There is still too much emphasis on treatment and not enough on prevention. These young people should not be getting cancer. Is it the contraceptive pill? Is it having too many mammograms and having them too young? Is it the overexposure to all the high-tech scans? Is it the western diet? Is it vitamin and mineral deficiency? The very treatment used for cancer causes cancer, so that is not very logical either! The women that I know that have cancer are all thin and active and take care of themselves. Any ideas on all of this?
Hello sam52. Thank you for your kind words. I do think about you quite a lot. As you say, spring is in the air, but here in Devon we have had four days of thick mist and cloud.
I hope all is well with you and that life is not too stressful.
Hoping for a cough-free day and to get my voice back.
Best wishes
Sylvia0 -
Hello all! Sylvia, sorry to read you were unwell, and still recovering...hope you will continue to improve and that you'll feel a lot better soon. Yes I too have been thinking a great deal about LauraJane and Suze35 from the TN thread and have felt very sad since I read of their passing...this disease seems to be so random, and while there are all sorts of things which MIGHT contribute to us getting bc, in actual fact there isn't much hard evidence to link a particular life-style or exposure to a particular chemical to the develpment of a breast tumour. I'm over-weight, though not obese, have been physically active all my life, always had a pretty healthy diet, never ate much sugar or animal fat, yes, I like my wine, but in moderation, so in actual fact, in my case it's possibly the weight one could point at, but as you said, many of the women I know who have had bc, are actually really slim. The one thing my oncologist DID say however, the last time I saw him, was to avoid gaining weight, as he believes that might trigger a recurrence...In fact I've been trying quite hard to lOSE weight, but it's difficult as to avoid meat I'm eating pulses a lot, and although I'm back to my pre-cancer weight, I haven't managed to lose any more so far. Regarding Metformin, i'll be seeing my oncologist on Saturday and will be asking him about it, but knowing him I'm pretty sure he will probably not recommend it as clinical trials have not yet finished in Canada and the US, and results so far, depending on which report you read, have not actually been that conclusive.
Higher up I'd asked when do we start counting being 'cancer free', after surgery, or at the end of all treatment, ie after radiation? Anyone with answers? I want to start counting...
Yes, spring is coming in here, and as a result I have a horrible coughing spluttering allergy, to what precisely I don't know, but I've actually had a post nasal drip from before my diagnoses over a year ago now. I stopped the antihistamine tablets I'd been taking and got the spluttering back with a vengeance. I hate having to take medicine every day, but other remedies don't seem to help...any ideas? it's so irritating to have this ticklish throat and the urge to keep coughing... hope we both have a cough free evening Sylvia!!
Best wishes to all
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Hey Maria,
People have told me that you can either start counting from the date of diagnosis, date of surgery or end of treatment date. It's your choice. I'm going to go with Surgery date. Coming up on a year in April.
Our allergies have been terrible lately too, the only thing I can recommend is air conditioning, but its hotter here and we can put it on every now and then to filter the air a bit.
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Sylvia,
I hope you are feeling much better soon!
Maria, I find if I take an antihistimine every other day or every third day at night (a sedating type like benedryl or phernergan) it not only helps me sleep but helps with the drainage. I'm still drowsy the next morning, but not nearly as bad as it is when I take them during the day. The 24 hour type like Claritin make it impossible for me to sleep, so I don't take them at all.
My oncologist tells me to count from diagnosis date. My oncology surgeon said either end of treatment or time from surgery. He told me yesterday that my greatest risk for recurrence would be up to two years following surgery. I had a good check up otherwise, and he said I am doing very well. I've increased my walking to one hour at a time, and bought some elastic weight training loops for my office workout area. I plan to incorporate that before too long.
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I always wondered when to start counting! My treatment has lasted a year, and it would be nice to count some of that time. I had chemo first, but it really was at surgery that they knew that my cancer responded so well, so i will use November 30th, my bmx date. I am coming up on a year since I was diagnosed, hard to believe I have been in treatment this whole time, with my infection setbacks!
We just planted our new peach tree in memory of LauraJane! It is so pretty. I will take some pictures when the weather is nicer. We were out in the cold rain planting and fertilizing. My husband agreed to make a bench in memory of Susan and the other women we have lost here at bco. I am not sure if we will use stone or wood. We have some beautiful wood from fallen trees we can use, but it wouldn't last as long as stone.
Christina-I am impressed! One hour! I have been doing at least 15 minutes daily, with a few days of 20-30 minutes. My doc said that since I am still in rads to really listen to my body and to not over do it, but to get some exercise daily. Congrats on the good check up!
Maria-have you tried flonase? It has worked in the past for me and seems to have less side effects than other medicines. I think it is onloy available by prescription, it is a nose spray. My eyes have swollen up from allergies, my eyeballs are ok but my eyelids and undwrneath my eyes are a mess.
Heather, I was also diagnosed in April of 2011. My mammo was March 31rst, I knew then, but at first they thought it was DCIS, but nooooo, it was invasive and moving fast! The news kept getting worse and worse by the week.
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Hello Maria_Malta
Thank you for your post and your kind words. I am feeling much better and feel that I have turned a corner now. There are so many people here that are affected with this viral infection and it seems to hang on for five or six weeks. I am in my third week and DH is in his fourth.You are right, Maria, when you say that this disease is random and your state of health prior to your diagnosis does not seem to matter. As you say, there a lot of possible risk factors but I do not know about definite causes. I think we each have to make up our own minds about all of this and make our own decisions about our pathways. I certainly think that smoking and drinking alcohol is connected with breast cancer, and a lot of other illnesses. I also think diet does play a role and that in our western diet there is too much emphasis on meat, poultry and dairy products. I think we all know the importance of fruit and veg. I think we need small meals, walking and as little stress as possible if we want to stay healthy. I think what is going on with our hormones plays a part in the development of breast tumours.
In your case, as you say, it might be a weight problem. We do know that the more weight we have the more oestrogen we have. We know that too much oestrogen is a villain. I do not think we can say that oestrogen is of no consequence to us because we were diagnosed with TNBC. However, we also know that cancer cells mutate, and, as my oncologist told me, my tumour did not necessarily start as negative. We all now know that tumours can be a mixture.
All we can do is control what we can in our lifestyle and hope for the best. There are no guarantees. Three of the women I know, two diagnosed with hormonal breast cancer and the other one with TNBC, appear to be the healthiest and fittest that I can imagine.
I think your oncologist is right to advise you to avoid putting on weight, especially as it tends to accumulate around the middle in post-menopausal women and is very hard to shift.
I shall be very interested to know what your oncologist has to say about metformin. I am quite concerned that women are taking it when trials have not yet finished in Canada and the US and that so far the results are not conclusive. Metformin is a drug licensed for the treatment of diabetes and I dread to think what it might be doing in the bodies of women who do not have this disease.
As for when to count about cancer, my information is to count from diagnosis. My diagnosis was June 20th 2005, so I count that on June 20th this year I shall have survived seven years, or that it is seven years since I was diagnosed. You have to remember that we are told after treatment that has been successful that we have no visible signs of cancer in our bodies. That visible has always been an important word to me. I always remember that my medical team told me they do not use the term in remission and that it is used only by patients.
I was sorry to know that you are suffering from allergies. My husband has them all year round and so many things can trigger them. They come on just before it rains, can come on after a shower, any kind of perfume triggers them, any kind of work in the garden, dust, pollen, fur, feathers and so on! He finds that the antihistamines do not work and the homoeopathic remedies do not work either. Stress triggers them off, so you need a laid back lifestyle.
I do sympathise with your ticklish cough and the urge to keep coughing. This is what I am going through at the moment. The cough gets worse in the evening and I become tense and apprehensive about going to bed, as I know it will trigger the coughing even more. In a way I feel that I am responsible for bringing on the coughing. I find the most soothing is Manuka honey in lemon and ginger tea or in Rooibos tea. I have been taking honey but then worry about the sugar. I decided that I just had to get rid of this bug and took cough mixture and Strepsils. They have really messed up my system as my body is not used to taking such things.
I hope you will be feeling better soon. We must all concentrate on looking forward all the time and being positive. We must remember that more people are surviving cancer than are dying from it. Worry does none of us any good. Let us all look forward to spring and summer, to the beauty of nature, to sunshine and to happy days.
Best wishes
Sylvia0 -
Hello mccrimmon324 (Heather)
Thank you for your post and thanking for letting us know how you are counting. Since I am counting from diagnosis I shall say that Maria, who was diagnosed in March 2011, has now gone a year since diagnosis. Congratulations to Maria. You were diagnosed in April 2011 so in a few short weeks it will be a year since your diagnosis. Congratulations Heather. I think what we should all consider important is that we are all still here to count the time.I was sorry to hear that you also suffer from allergies. I can imagine that the hot humid climate of Florida would be a problem and I do know that air-conditioning helps. The Canadian summers were terribly hot and humid and I do not think my husband and I could have survived them without the air-conditioning, I do not suffer from allergies but my delicate skin is very sensitive to insects. One summer in Canada I was literally devoured by black flies and mosquitoes. I was so badly bitten that I did nothing but sleep for a week. My doctor said I should carry adrenalin around with me. Even in Exmouth the insects will come after me, but they are nowhere as vicious.
I hope you have had a good week and that you will have a good weekend. Please try not to be too disheartened by the deaths on the TNS, look after yourself and live your days to the full.
Best wishes
Sylvia0 -
Hello christina1961
I am sure that you have given good advice to Maria. We now have three of you in our group that suffer from allergies. Since you are in Tennessee I imagine that you are suffering from the same hot and humid climate that Heather has in Florida. Do you enjoy this type of climate?I was glad to know that you had a good check up and it is good to know that your oncologist has said you have done very well. Since I count from diagnosis, we can say that you are just over a year from it. Well done. You are definitely going all out to keep physically fit and you are to be congratulated on that. I am sure it must make you feel very well and take your mind off of breast cancer. Keep up the good work and let us know about your studies if you have gone back to them.
Have a happy weekend.
Sylvia0 -
Hello bak94 (Brenda)
Thank you for your post. Since I count from diagnosis I shall say that you are nearly one year out from your second diagnosis. Congratulations. You have done so very well and I know that we all admire you in this group for achieving this and for the second time.I was very moved to know that you had planted a new peach tree in memory of LauraJane. We shall all look forward to your pictures when your weather is nicer. I have to keep remembering the variations in climate in the US because in the UK it is fairly uniform, but more cold, snowy and wet in Scotland and the North of England. Devon is fairly temperate. It is very kind of your husband to make a bench in memory of Susan and others who have died on breastcancer.org.
Your doctor is right to tell you not to overdo things. Although we all find radiotherapy easier after chemotherapy, it still takes its toll on you and you need time to recover. Just do gentle exercises.
I am now counting you as the fourth person in our group to suffer with allergies. I do not think we can blame this on the hot humid climate. In this case it sounds more like the cold damp climate. Here in Exmouth, Devon, it is cold and damp. My husband has suffered a lot since we moved here in 2002. I think, above all, it is the damp. This past week it has been really damp with a thick mist greeting us every morning and not clearing all day. There is not a hint of sunshine. It sounds as though you suffer really badly from allergies.
I hope you have had a good week at work and that all has gone well with your radiotherapy. How are the studies going?
Have a good weekend and be happy and carefree. You are far too young to worry about things. Just enjoy your day. I seem to remember you have a sister who had some health problems. I hope all is OK with her.
Best wishes
Sylvia0 -
Hello BernieEllen
I just wanted to say hello and hope that all is well with you. You are another one that is one year out since diagnosis.Do you suffer from allergies? I know that Ireland is cold and damp and has lots of rain - the Emerald Isle - so I am thinking that it is quite likely that you do.
I do hope that you have had a good week and that you will have a good weekend. Do you have any plans for spring and summer or for Easter that is fast approaching?
I am sure we are all thinking about mccrimmon324 (Heather) who is busy getting ready for her trip to Paris and Rome. I am sure she will have a lot to tell us about it on her return.
Best wishes
Sylvia0 -
Hello sam52
I just wanted to say hello and wish you a happy and relaxed weekend.It is only three weeks to the Easter bank holiday weekend, so the end of term must be fast approaching.
Have you done anything in your garden or your allotment?
Here we have had an infestation of leatherjacket insects on the lawn. They can eat away at it, so I called in the Green Thumb company to spray everywhere. Apparently a lot of lawns are suffering from it and it is because of wet summers and mild winters.
I hope you are keeping well.
Best wishes
Sylvia0 -
"I would rather be ashes than dust! I would rather that my spark should burn out in a brilliant blaze than it should be stifled by dry rot. I would rather be a superb meteor, every atom of me in magnificent glow, than a sleepy and permanent planet. The proper function of man is to live, not to exist. I shall not waste my days in trying to prolong them. I shall use my time."
~ Jack LondonAnother lady has just passed. Another Star in the Sky.
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Good morning to everyone and glad to hearSylvie that you are recovering from the nasty cough, my hubbie has just started with it and I have been making honey and lemon endlessly.
I have been busy looking after my grandson, he came for over a week to give his mum and dad a break. He is 15 months old,doesnt sleep and they live 3 1/2hours away so I cant help on a day to day basis. Exhausted but miss him so much.
About our cancer support centre....... its based in what would be the size of a 3 bed dormer bungalow adjacent to the house of the woman who runs the centre. It is a wonderful place to go and sadly new people arrive each week and she is in the process of fund raising to build an extension. There is Tai chi twice a week, meditation, relaxation and people can drop in or ring to visit on a more private basis until they feel ready to meet others. We are starting art classes next week,followed by first aid and flower arranging. Most activities are arranged because people attending suggest them. I am going to England to train as a bra and prosthesis fitter in May so that we can offer that service in a comfortable and understandindg environment. Unfortunately the centre recieves no funds even though it is affiliated to the cancer society, so there is a fund raising concert on Mother's day.
It has been my lifeline as I was quite down and worried about everything. Mary the co-ordinator is held in very high regard by the medical professionals and can contact them with any queries and will now hold info groups facilitated by different specialists. I am so lucky and the centre is only 5 minutes walk away. Our first women to women group will meet in april so that we can compile a list of issues and questions which we hopefully can get answers to. The mens group was very successful and facilitated by a consultant oncologist. As yet I haven't met any women there with TN.
I myself have had to pay this week to see a dermatologist privately re rash on cancer breast . He didnt seem to be very familiar with my condition but felt that it is radiodermatitis. I am seeing my breast surgeon next week because of the pain and will discuss with her as he wants me to have a biopsy. I'm angry as feel that this, the rash, should have been dealt with by my cancer team. I just hope and pray its nothing bad and not re-occurrence.
Bernie, the poem was beautiful , a wonderful tribute and brought fond memories of my friend who passed last october.
Happy St Patrick's Day x
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Hello BernieEllen
Thank you for the profound quotation from Jack London. They are very wise words to which we should all pay attention.Thank you for letting us know about the death of another member. It is with great sadness that I discovered on the TNS that MBJ had died. She was a very well known and informed person on that thread. I am sure that everyone will miss her.
Keep well BernieEllen.
Best wishes
Sylvia0 -
Hello mccrimmon324 (Heather)
I am posting to wish you a happy holiday in Paris and Rome. Please enjoy every moment of it and cast cancer out of your mind.This has been a dreadful week on the TNS thread and you must try not to let it affect you too much.
Have a great time.
Best wishes
Sylvia0 -
Hello linali
Thank you for your post and thank you for your kind thoughts. I do hope that your husband will take care, as I am told it takes a long time to recover from this bug. I hope you do not catch it.I bet you really enjoyed looking after your grandson and that his parents appreciated the break. At 15 months he will be very active.
I was very interested to learn all about your cancer support centre and it does sound like a lovely place. It is so essential to have places like this for cancer patients, as it takes them out of the hospital setting. I do hope you will have a successful fund raising session to build an extension. The woman who runs the centre is doing a marvellous job and providing a much needed service. It is good to have activities to take your mind off the cancer.
I was most impressed to read that you were going to England to train as a bra and prosthesis fitter so that your centre can offer that service. You are doing something that is really essential.
I cannot understand why the cancer society to which the centre is affiliated cannot provide some funding. I do hope that your fund raising concert on Mother's day will be successful. I can tell that this centre has helped you very much through your cancer journey. From diagnosis through to the end of treatment is a very worrying and stressful time during which a patient needs all the support that they can get. It is not a journey that you want to spend alone.
Please post and let us know all about your first women to women group when you meet in April. Let us know how it progresses and what issues come up. I feel it is important on this thread for women to let us know what issues are bothering them and what information they need.
I am not surprised that you have not met anyone with TN in your immediate surroundings. It is the same with me here.
I was surprised to read that you had paid this week to see a dermatologist privately about a rash on your cancer breast. I think that you need to see your oncologist or breast cancer surgeon so that they can take a look at that rash. Even though you have finished treatment, you should still be having regular check ups and be in touch with your team about anything that does not seem normal or is bothering. How soon next week will you see your breast surgeon?
I can understand that you are angry because this rash most certainly should have been dealt with by your medical team. They know your history and they are supposed to be looking after you. Try not to worry but do not delay and get this rash looked at and treated.
I agree that Bernie's poem is beautiful. She has the knack of finding the perfect quotation.
I was so sorry to hear about your friend who died last October. Did she die of cancer?
I hope you will have a great St Patrick's Day.
Kind thoughts are coming your way.
Sylvia0 -
Hi sylvia, hope you and your husband are better now.
In reply to your early question - yes, i suffer from numerous allergies. the most dangerous being certain antibiotica and anti histamines. I also have problems with my white blood cells, hence i bleed and bruise easily and any scars take a long time to hea. I also carry a rare hereditary gene, linked to inter breeding centuries ago.
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I'm feeling sad. Saw my RO and he said he worries about me.? What did he mean? Then he said to make sure I tell them of any pain or symptoms that I have. He must feel it is just a matter of time...with my late stage and all. I feel doomed. I tell them everything, probably too much! I made them look at my eye when I was having allergy issues. My blood work was good, lymphocytes are a bit low though. I get my port on Wednesday, I guess that is another reason I am freaking out. Not about getting the port but more why they want me to have the port! I will be getting my 6th zometa right after then I go to Zometa every 3 months. I feel like I just take support from everyone, but don't give it. I will give support if I manage to get through all this.
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Hi sylvia thanks for your reply.
have been up since 5 30, couldnt sleep. I had a bad day yesterday starting with a letter from the social welfare saying that my benefit ending and no money unless I am out of work for the next year continually. I work as an attendant in a hospital cssd dept and havent returned to work yet as occupational health havent come up with a job that I can do. I have alot of pain in the breast and the continuing rash along with restricted use of my arm and a swelling with pain if I do over use it eg driving or lifting. My husband is retired and I have an adult son with aspergers and many other problems who is partially financially dependent on us. I know that here in Ireland we do recieve benefits for longer I think and I always wanted to return to work at some stage but feel that it will be a while longer before I am able and will most probably not ever be able to do my former job.
My darling little grandson was v ill with a vomiting bug and was to be admitted to hospital if he didnt improve by late yesterday. I was waiting for a call and then we would drive to my daughters who is 3 1/2 hrs away. Thankfully none came and he was a little better. Hopefully he has been able to take fliuds through the night and is no longer de-hydrated.
Sometimes cancer is the least of my worries and even though I've been to mindfulness and relaxation classes I still find it difficult to stop worrying and stop the feeling of being overwhelmed whenever a difficult situation arises.
I will see my surgeon on Thursday but do not think that she will be prepared to say that I am not fit for work for the next 12 months. My gp has also had cancer but feels that one should make the best of things, dont worry, get on with life!
Sorry for this post but it has been a long night
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Linali, so sorry to hear that you are having to go through this. I had to give up work and was never entitled to any money. The local social welfare officer helped me and so did the Social worker at the hospital in waterford. You find another doctor and tell them this is all too much not just physically but mentally. You make sure you get the help you need. I will send a a PM.
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Linali, I am so sorry you have this stress during this time - it is enough for us to deal with the illness, much less job and income worries. I don't have any advice as I am in the US, but I send my support and hope for a break for you.
Bak, Please don't ever feel bad about asking for support. You are very supportive and your generous spirit shows through your posts. My sister had grade 1 ILC, strongly ER positive, with 10 nodes and a large tumor. She had a double MX and the MO says she only has a 1% risk of recurrence a year now, but he still wants her to keep the port. When she asked about it, he said it was because of having the positive nodes.
My BS just told me I should wait two years following my MX to do any reconstruction because of risk for recurrence. Always remember these doctors due to the nature of their field are very cautious - and from what I've heard from nurses, some patients don't check for lumps, bumps, rashes - or mention things that bother them. You have done so well, and stayed so positive, and I send you love and support! Anytime you need it!
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"The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience."
~ Eleanor Roosevelt0 -
Hi everyone.
I'm not from the UK, but wanted to come by and say hello. Sylvia was kind enough to direct me here from a different thread and my heart goes out to my fellow TN sisters from the UK.
Warm Regards,
Betty
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Sylvia,
Thank you for your warm invitation. I'm truly sorry that you've not been feeling well. Please know that you're in my thoughts and I hope you'll feel better soon.
Betty
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Hello BernieEllen
Thank you for your post. My husband and I have finally turned a corner and are starting to feel better. I cannot believe the number of people in this country that have been suffering from the bug. A friend of ours told us that he had been so ill that he thought he was going to die.I was interested to know that you also suffer from allergies. I think that means that all of those in our group that has been on the thread almost since inception have some form of allergy. I seem to be the exception.
I was sorry to learn that you also have problems with your white blood cells, which makes you bruise, bleed and take a long time to heal. Was this a real problem when you were going through chemotherapy?
I was very interested to know that you have a rare hereditary gene, linked to inter-breeding centuries ago. May I ask what kind of problems that causes you, if any?
Thank you for your support of Linali. I think she is in great need of all our support at this time and you can be of special help to her since you are in the same country. You can be particularly helpful about benefits, which are quite complicated in different countries. I do agree that when you have been affected by cancer you cannot deal with additional physical and mental problems. You certainly do not need financial worries.
I know that in the UK you may be entitled to benefits, but I am not sure how you qualify and whether everyone diagnosed with cancer is entitled. I know there is a benefit called Disability Living Allowance (DLA) which is not means tested and which is paid even if you are working. I am not sure whether you are told about this at the hospital, but I know that, at the hospital in Exeter, where I go, there is a lovely modern house in the hospital grounds, known as FORCE cancer charity. You can go there to sit and relax and be quiet, have someone to talk to you, have aromatherapy etc., have counselling and certainly get advice about benefit entitlement. They tie up with the Citizens Advice Bureau (CAB), another charity. The CAB is a marvellous organisation and they will fill in forms for you, spell out what you can get, and make sure that you get it. Also here, if you agree to have the Hospicecare nurses come to visit you, they will also sort out all your benefits, fill in forms and get your GP to fill in the parts he needs to.
The DLA is for people under 65. After 65, if you are applying, it is called Attendance Allowance and is not quite so much. However, if you are under 65 when you get DLA it continues as such after 65. This benefit is based not on the actual disease, but from all the needs arising from it.
Do you have anything similar in Ireland?
Do you live anywhere near linali? Do you have a local support group, as she does?
Hope you are having a good weekend. Here in the UK it is quite mad today with all the shops in a frenzy because it is Mothering Sunday. I think it would be so much nicer if these special days were not so commercialised.
Best wishes
Sylvia0 -
Hello bak94 (Brenda)
Thank you for your post. I was so sorry to read that you are feeling sad. It is even more sad that it seems to be your RO who has put you in this low mood. I cannot understand what he means by saying that he worries about you. All doctors should be concerned about their patients, so what on earth is he making this statement for? I would have definitely asked for an explanation on the spot.I think it is perfectly normal that he would ask you to let your team know about any pains or symptoms. I think that this is probably standard procedure. When I go for check ups I get asked whether I have noticed anything different, how I have been, etc. Take this comment as something positive. At least it means they are trying to take care of you. I am pleased to know that you tell them everything, and it can never be too much. If it is bothering you, then you have to bother them with it.
Your lymphocytes are probably low because of the radiotherapy and the rest of your treatment. You must give yourself time to recover and you will slowly pick up. In this case, concentrate on the positive, that your blood work was good, and tell yourself that next time the lymphocyte count will be better.
How many days of radiotherapy do you have left? Are they not going to wait to put a port in until you have recovered from radiotherapy? Then the big question that I have is why is a port being put in? You will have finished your treatment, so why the port? Have I missed something? I can perfectly understand that you are concerned as to why they are installing a port.
Before Wednesday, you need to get this sorted out. You need to ask point blank why you are having a port. I had a port installed after I had finished chemotherapy and the oncologist said she wanted a port installed at the same time as the surgery, because she thought I might need more chemotherapy. I was told that it could stay in for life, even if I never needed to use it. I went ahead and it was installed under general anaesthetic at the same time as I had a right breast mastectomy. As it turned out, I was not very happy with what happened after that. I was told that the port had to be flushed out at the oncology unit every three months with saline and heparin. I never would have consented to having that port installed had I known that. The first flushing out was fine, but at the second one it would not flush and I was told there was a problem. It was discovered that the port had kinked and fractured. Consequently I had to go back into hospital and have it removed under general anaesthetic. I told them I was definitely not going to have another one and they said that, after failures, another one is not offered.
I have heard various reports about women having problems with all the different ports, especially infections. My port was called a vascular port and was installed just above where my right breast was removed and I still have the scars to prove it.
Make sure you get all the information you need before getting into this. Do not be used as a guinea pig.
As for the Zometa, is this being given to you as a preventive? How long are you going to stay on that?
In all of this, the thing that would bother me if I were in your position is this apparent vagueness about what stage you are. Surely there is a big difference between being Stage III and Stage IV. Stage III as I understand it means that there is no distant spread from the original site of the tumour. This means that it has not spread from the breast to the lungs, liver, brain or bone. As I understand it, lymph nodes around the breast area and under the arm that are positive do not count as spread or metastases, in the sense that is used for Stage IV.
You need to get this clarified. Do not be afraid to speak up. If I were in your position I would have three questions.
1. Why are you installing a port?
2. Am I Stage III or Stage IV?
3. Why am I taking Zometa? What is the purpose and am I on it for life?
Remember, Brenda, we are all here to support you and you have to take as much support as you can. You have played your role on this thread and given plenty of information and support. Please give yourself some credit. You have been through all this twice. Get to the end of your radiotherapy and then give yourself a good break. As I have said before, you are far too young to worry yourself like this. Look ahead with optimism and do not ever put yourself down.
I hope you are doing something nice this weekend.
Best wishes
Sylvia0
