Calling all triple negative breast cancer patients in the UK
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Hi Sylvia,
Just a quick post as I am going through my welcome speech...short!... to our healing mass and putting together some questions for the oncology radiologist. I cannot find the thesaurus tool on my computer which I need as I have seem to use the same words frequently...very boring to listen to.
Leigh is home for a few days and I have had a frustrating week trying to chase up appointments for both of us.
Whoever invented the answering machine should also have invented some kind of alarm or loud sound if messages aren't replied to!
One question that I am going to ask again is why do we not have blood tests for markers as a check or screening.
A woman who has been diagnosed with spread to the lungs was told...oh the chemo and radiotherapy didnt work and the cancer travelled and left a trail behind it. So my question has always been how do they know. I know that if they do chemo before surgery they can tell if the chemo is working but in the case of the reverse it seems there is no test. Our centre has got the woman changed to another cancer clinic.
I will only have a short space of time to ask questions as the women are leaving at 12 15 so that the men can ask their own questions. Some are reluctant to discuss their cancer with us present and we must respect that.
I did return to my GP and told him that I felt that up to now I had coped well with everything but that now I wasn't...there just seemed too much of it. We talked and he said the usual stop worrying it may never happen, my response was it has and it will continue to do so and I need to be well and strong to deal with it. I did not want medication unless he felt it necessary. Any way he said that the meditation and counselling were the best way to help and I must say that I agree with him. I still dont feel that he fully understands eg Leighs Aspergers and how the whole transgender issue affects him but at least he gave me time. So no drugs for the moment and that alone makes me fel that I am coping better.
The time is passing and so I will send to all of you the love from us all at our healing mass.
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Hello Jenn
Thank you for your post. There are definitely breast cancer patients going through standard treatment who have received DLA. I once attended a meeting of cancer patients at Hospicecare and there was a discussion about it. DLA is allocated not for the specific illness but from needs arising from it. You do not have to be immobile. It can be done through your GP and medical team. Forms are given for you to sign and fill in and then the GP signs it. I remember the form that grants you the DLA says that it is indefinite, but I suppose that you give it up when you are back to normal and no longer have needs. I do not know if this has changed with the coalition government that is now in power. It is worth a try. As I said before, the best place to go is the Citizens Advice Bureau, as they know how to handle it and will get you anything to which you are entitled.
I hope you will not have to wait too long for your chemotherapy, as waiting is always the most worrying thing.
Wishing you well.
Sylvia xxxx
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Hello Mumtobe (Carol).
Thank you for your post. I was so glad to know that you found the information on Power Foods informative and I was also glad to know that you are eating and drinking a lot of what is on the list. At least we can have control over what we are eating and drinking and I have read that the experts think that our food is responsible for 31% of cancers! I really blame all the fast foods, full of fat, salt and sugar and very little nutritional value. Keeping active is also something we can control and trying to learn to relax.
I was glad to know that all is well with Emma and Alan. It is good to know that you have a positive husband. I am sure you will both be glad when treatment is over and your husband is right to be proud of you.
Are you sure about a CT scan for marking you out for radiotherapy? I remember very clearly that for the marking out I was put on a prototype of the radiotherapy machine so that the position of the marking would be the same as on the actual radiotherapy machine. It also gives you an idea of what the machine is like.
I did have quite a break between my surgery and the start of radiotherapy. Remember that I had my six months of chemotherapy before surgery. I had my surgery on May 17th 2006 and I started three weeks of radiotherapy with boosters towards the end of June. It may not be the same for you as it is not following straight on from surgery. Even so, I would have thought you needed a rest to let your body recover.
Hope you are having a good weekend.
Love.
Sylvia xxxx
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Hello linali (Lindsay).
Thank you for your post. I hope all goes well with your speech.
I was sorry to hear you have been having a frustrating week and I can sympathise. I find bureaucracy has gone mad and I am fed up with pressing buttons and listening to automated messages. Raymond and I have been having frustrating sessions with call centres. When did employees stop being able to take in information? I agree with you about answering machines. It is a wonder they have not introduced something that tells you it is about time you answered your messages.
About blood tests for markers, my oncologist told me, when I asked about them that they were only good for the day on which they were taken. I must admit I am not sure what that means. I seem to remember that sam52 who has an oncologist friend posted on this thread to say that oncologist had said they were not useful because they were not reliable. We have to remember we all have cancer in our bodies and I seem to remember the normal level is 38. I suppose if we did have them, it would be another source of worry, as they might go up and down. If they were a little elevated what would the experts do about it? We could not have a lot of screening because of radiation risks.
I find it odd that men do not wish to discuss their cancer problems with the women. I would have thought that it would be very useful, since cancers, whether in men or women, have a lot in common. I have just finished helping the husband of a friend of mine through his prostate cancer treatment. He knew I had been through breast cancer, so phoned me and asked if he could phone me when he felt the need. He did this through all his chemotherapy and radiotherapy and said he found it useful to have someone with whom he could talk. He had his post treatment appointment with his consultant and phoned me to say he had the all-clear. He said he could not thank me enough for all my help and kindness. We all need to be open about cancer. That is the way to make progress.
You do need to put breast cancer into a little corner of your life and get on with everyday normal living. You should feel happy that you have made a successful cancer journey and that in future you will face anything if you have to.
If I were you I would steer clear of sleeping tablets and antidepressants. I think that meditation and counselling are very helpful. Counselling especially is very helpful as it allows you to get things out of your mind and put them into perspective.
I do understand the stress that you must have with Leigh's Aspergers and the transgender issue, but everything will fall into place in due course. Why not have little Oskar cheer you up through Skype? Children can be a good tonic.
Let us know how everything goes and if you want a lot of good information sign up for the newsletter from What Doctors Don't Tell You.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hello everyone.
I hope you are all managing to have a good weekend. At least January is behind us and spring is slowly approaching.
Special hellos to:
BernieEllen, Chatterbox2012 (Michael), sam52, FernMF, Liv and Carolben. I hope all is well with you and Carolben, I hope you are managing to keep busy, or resting, as you wait to find out what is going on.
Best wishes to all.
Love.
Sylvia.
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Hello Linali and jenn-uk
You both have sons with Asperger's? So do I.
I have seen quite a few like us on these forums; I am of the opinion that the severe stress of caring for a child on the autistic spectrum is a contributory factor to getting breast cancer.It can't be mere coincidence.
Sam
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Hello Sylvia
Thank you for your good wishes.
I am going up to my father's tomorrow and back on Monday evening.I have an appointment with his social worker on Monday morning to assess how his package of care is progressing.(The carers are apparently coming morning and evening, but my father is very reluctant to let them help him in any way.It is peace of mind for me, though, that someone is keeping an eye on him regularly).
Have a good weekend!
With love,
Sam x
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hello sylvia & everyone
pretty chilled weekend, not much happening. went down the beach for a walk saturday and today.
hope everyone is doing ok.
much love to all.
xx
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carol & ben ((hugs))
hope your ok and eating a bit.
xx
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mumtobe
((Hugs)) they do like to have at least 4 weeks break.
xx
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Hello sam52.
Thank you for your posts. I do hope all will go well with the carers and that your father will adjust to them. I know from experience with some of the more elderly people here that they all seem to resist help. The man with MS, who died last year, refused all help for a long time, and only accepted after a fall after which he was lying in his bathroom for about two days. Raymond and I noticed his lights were not coming on and went to find out what was going on. Fortunately we had a key to his apartment so we could get in. He was in a terrible state and we called the paramedics immediately and he was taken off to hospital. On his return the social services set up carers for three times a day. The trouble was he could never be sure at what time they would turn up and they were always very young girls who did not seem to have a clue about anything. One even invited him to a party provided that he brought a bottle of wine!!!
I noticed your post about looking after someone with Asperger's syndrome and the development of breast cancer. I am convinced that stress of any kind is a risk factor in the development of breast cancer, as stress sends all the hormones haywire and I can only imagine what this does to the body. We know stress causes high levels of cortisol in the body and this is not good.
I hope you have a good week.
I hope this week I shall be able to sort out all the muddle with my requested DEXA scan, as well as my request for a new prosthesis. It looks as though the DEXA scan people and the office dealing with prostheses can get its act together.
Love.
Sylvia xxxx
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Hello Liv.
I was glad to know that you chilled out this weekend. I think that is a very good idea and that we all need to do more of it. We must not get obsessed with TNBC.
Yesterday Raymond and I went out for lunch with my brother, who also lives in Exmouth. It was a nice change and nice to talk about all different things and to laugh a bit.
I hope you have a good week and please keep us informed about how Navelbine affects you.
I am hoping to get the February edition of What Doctors Don't Tell You. Have you looked at their website? Have you signed up for their newsletter?
I clicked on News on their website and looked at the headlines on the first few pages of this. A few headings caught my eye, namely that researchers say that chemotherapy helps cancer tumours grow.
Because I have signed up to the newsletter I can then click on “more” and get more details on this. I may try to this later on today.
The other headline that caught my eye on page 1 was that grapeseed extract is more effective than chemotherapy for advanced colorectal cancer and maybe a potent alternative for other cancers. Again for more details you have to click on “more”.
There is so much information flying around that we have to make up our own minds what to do.
I know that grapeseed extract supplements are quite expensive here, but I do remember this extract was being praised on CancerActive as well.
It does not hurt to read any of it anyway.
Do you receive Amoena Life? It is a free magazine that I signed up for when I was first diagnosed. It has all kinds of interesting information and has letters from women who have gone through cancer treatment. It also has some nice fashion wear. The letters come from all over the world.
I know you like exercise, so you would be interested in the yoga exercises shown in the latest edition.
The other magazine that is similar is Vita, also free.
It is useful if people on the thread read these magazines and then we can discuss them.
Best wishes.
Sylvia xxxx
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Hello everyone.
Another week is beginning and I do hope it will be a good one for everyone.
I hope linali (Lindsay) that all went well at your meeting and that you will have some information for us. I keep reading about the benefits of meditation, acupuncture, aromatherapy to patients going through breast cancer treatment.
Mumtobe (Carol), we shall all be thinking of you as you go through your last chemotherapy treatment. Let us know when your radiotherapy begins.
Chatterbox2012 (Michael), wishing you well when you see your haematologist tomorrow.
Sam52, I wonder which one of us will get our DEXA scan and our parathyroid level first.
FernMF, we have not heard from you in a while, but hope all is well.
Carolben, I hope all goes well today, and am glad that your sister is with you to deal with anything you have to face.
jenn-uk, I hope you are managing to keep busy as you wait to start your chemotherapy treatment.
BernieEllen, where are you Bernie? I do miss you. Do you hear at all from Maria_Malta? She is also a big miss on the thread.
By the way, have you noticed we have now reached page 100? I could not have believed this would happen when I started the thread.
Thinking of you all and sending you best wishes.
Love.
Sylvia xxxx
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Hello everyone.
I am just popping in to say that I was shocked to read that only 10% of Britons take their health seriously and rely on medicine to make them better! It is appalling that only one in ten people takes responsibility for their health by eating healthy foods, especially fruit and vegetables.
Have you seen the television programme Man versus Food? I cannot believe what is being cooked up and eaten on that programme!!! I sometimes have to turn off the set!
Best wishes.
Sylvia
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Hi Everyone,
Slyvia thank you for all the information regarding the beneficial food and WDDTY. Very interesting read. I am going to look into the grapeseed and see which type we can purchase in the health shops here.
Yes BernieEllen, where are you? I do enjoy your humerous tales. I could do with a good laugh only not too funny as my fill today is feeling very tight. Hope my incision does not split open as the incision skin is very thin.
Syliva, I have asked my BS to have my slides checked for the HER2 with my luck I know it will be a neg. I also have RH negative blood group, so what's another neg.
Best wishes Lola.
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Hello Lolalee,
Thank you for your post. I was so glad to know that you found the information about power food interesting. We can at least control what we eat. I am thinking of buying some grape seed supplements as well
I do hope Bernie will come to our rescue soon.
I think you are right to find out about your Her2 status and do not worry if it is negative. At least if it is, you will not have to have the monoclonal antibody drug Herceptin. It has nasty side effects. I am glad not to be taking any drugs and my immune system is free to recover. Tamoxifen, Arimidex and Aromasin, are not without nasty side effects.
Tell us a bit about yourself, so that we can get to know you better.
Love,
Sylvia.xxx
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Hello linali.
I was reading up on Google about AMANAE Transformational Bodywork Emotional Healing and I thought you would be interested in this kind therapy. The link is:
Amanae combines deeply intuitive touch with conscious breathing for a dynamic opening of the physical, emotional and spiritual bodies. This work is excellent for:
•Releasing old trauma
•Transmuting fear, sadness, anger and shame into pure energy
•Finding renewed vitality and connection to life
•Relating to the body and emotions
•Finding one’s voice
•Activating and strengthening self-healing
•Connecting your physical and light bodies
My cousin mentioned it to me and said that she and a cousin on her side of the family are going to attend one, run by Eric Litin. You can read all about him on Google.
I am not usually into this kind of thing, but I found what I read truly interesting.
My cousin has been through dreadful stress these past few years and I have done everything to help. She has COPD and hopes this will help. She has also been through the awful death of her father from throat cancer, the ordeal of emptying his home and selling it, the trauma of her partner, who is going through massive back surgery today and we do not know if he will walk again. She also had to give up a good job because of the COPD.
The cousin on her side is very much into healthy eating, very spiritual, believes in the yin and yang and practices and teaches yoga. I shall be very interested to see how they get on. This cousin goes to these therapy sessions regularly.
Thinking of you and hoping you are managing to relax with all the stress you are under.
Love.
Sylvia xxxx
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Hello sam52.
I just wanted to let you know that I had a call this morning from the Breast Care department to arrange for me to go in to get a new prosthesis and I am going on Thursday. I thought it a bit odd that the woman told me to bring my prosthesis. I said I did not have much choice as I would be wearing it, as we get only one!!!!
I then phoned the osteoporosis department and asked whether they now had the missing referral from my consultant. The woman was very nice, said they had and said I could make my appointment with her as we spoke. I have arranged to go on February 26th. If I am told I still have osteoporosis then I shall think that it is not true that the parathyroid problem caused the osteoporosis, because I have read that this kind of osteoporosis is reversible after the parathyroid problem has been solved. I was always more convinced it had been caused by my cancer treatment, as I lost height only after that treatment.
The other alternative is that the parathyroid problem may have come back. That will be my excuse to get the parathyroid hormone level measured on Friday when I go for a full blood test.
I hope you got home safely.
Love.
Sylvia xxxx
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Hi Sylvia
I saw the hematologist today and my scans were clear apart from my swollen left parotid node. So I have been referred for radiotherapy. It may be that, because of the treatment I have had before that I won't be able to have treatment to that area, in which case, I will have single agent rituximab So all things considered a good result.
Michael
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Thanks for asking, Sylvia. I check the site nearly every day . . . just don't have much to say/contribute. I am well, my hair is growing quickly. I have gone without a wig since 12/31 . . . physically feel normal. My 1st 3-month check isn't until mid-March . . . so, all is well in my world. Statistics say I am 92% cured, and I have been "no-evidence-of-disease" (in my calculation/opinion) since May 7, 2012, the day of my BMX.
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Hi all,
Well, the news is not good - I definately have mets in both lungs. The nodules are small and we're going to do another 6 rounds of chemo - Pacitaxel is the one we'll use first. It'll be once a week for 3 weeks, then one week off; my onc says the side effects will not be as harsh as the Endoxan / Adriamycin mix in the 3 weekly doses that I had before.
This is shattering news. However, my family are all around me, my big sister has been such a comfort and help with practical matters! We hope have the port put in next week Thursday and to start chemo on the Friday.
Just wanted to post this, am still sorting through all my emotions, crying, getting angry, scared, very sad, especially at how sad it makes my son, Ben, and the rest of my family, that hurts me so much!\
This time I'm looking at the possibility of taking the 6 months off work, it put a lot of pressure and stress on both myself and my employer last time, and we don't need that!
Have neglected reading everything here lately - will be catching up soon.
Love and strength and courage to us all!
xxx
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Ooh Carol my heart goes out to you, I am so sorry to hear your devastating news. It makes me so sad. I can't believe how quickly this could happen. On the positive side the nodules are small and treatable so lets hope the chemo does its job and obliterates those nodules once and for all.
I will be thinking of you and send good vibes and best wishes for successful treatment.
Hugs, Lola.
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Carol, I am sorry to hear your news. The only Useful thing I can say is that the doctor told Janette that they have good results with pacitaxol.
Best wishes
Michael
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Hi Sylvia,
Thanks for that I will look into it.... could be very helpful to me.I do try to be more positive and the healing mass was so beautiful and spiritual even though I am not religious. I believe in the power of goodness.
The session with the oncology radiologist was quite short and his expertise is now in prostrate cancer. He had not heard of the use of metaformin in Ireland but would inquire and also concurred with other oncs that markers at this moment are not useful in breast cancer. One very useful bit of info was that the head of his research lab into prostrate cancer used to work in the US where TNBC was her speciality and suggested that she may be a useful contact.
I have had a lovely hour going through the recent digital photos of Oskar. We are doing scrap booking on Saturday and I want to put them into an album for Kerry for Mothers Day.
I would like to send my support to Carol in particular and will think of you in our meditation tomorrow. A woman and friend from the centre has just had a similar diagnosis is currently in Galway having tests on her lungs.
I have appt with pain consult on Friday which I am very nervous about but will write stuff down.
The daffodils are coming up and I have one snowdrop. Hopefully spring is on its way.
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Hi Sam52,
Yes it is something that I have thought about and truly believe that stress is a contributory factor in cancer especially TNBC as we are hormone and herceptin negative. It just seems to appear from nowhere.
Leigh wasn't diagnosed until he was 19 and had terrible problems in Uni.Some of these were down to his gender disphoria but he was just so unhappy and isolated. My husband was a special ed teacher and through out his life we knew that there was something " wrong". He was very intelligent but didn't fulfil his academic potential as he just wouldn't follow a syllabus if it didn't interest him and had dreadful handwriting. He was very artistic but once again couldn't conform to the exam syllabus. We visited the secondary school frequently and he was bullied in first year until he acquired a body guard[an older boy who played soccer on Damians team] He always was and still is so lonely and I find that the most heart breaking affect of his Asperger's. Leigh also has ADHD and now depression.
He is part of an adult aspergers group but can be so outspoken that he can alienate people even within that group. Having said that I am so proud of his individuality, his strong sense of social justice and how he manages to live on his own......With our constant 24hr on call support by phone.
Coincidentally for the 2to3 years prior to diagnosis we had the same issues with Dad and he developed dementia. He passed away the February before from complications and heart failure.
I suppose all of the stresses are those connected to being a mother and daughter but magnified. Maybe we keep all of this inside.
Anyhow this is who we are and it is good to be in touch with others who understand.
I hope that things work out for you.
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Hello Michael.
Thank you for your post. Thank you for letting us know how you got on. I hope that your team will be able to sort out a suitable treatment for you.
I can understand about the radiotherapy and glad that you will be able to be treated with rituximab. I am glad that you feel optimistic about what is happening. Let us know when you begin your treatment.
It is perishing cold here today with an awful wind blowing. It is tiring and I shall be so glad to have some milder weather.
Thinking of you and sending my very best wishes.
Sylvia.
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Hello FernMF.
Thank you for your post. I was glad to know that all is well with you. Pop in when you can to talk about anything you like, so that the thread remains interactive. There is always someone going through treatment who is in need of support, information and other people's experiences.
It is good that you have got in to the routine of a normal life interspersed with regular check ups.
I would be interested to know and I am sure others would also be interested to know how you calculate the statistic of 92% cured.
Keep in touch.
Best wishes.
Sylvia. xxxx
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Hello jenn-uk.
Thank you for your post. We are all thinking of you and hoping that all goes well with your chemotherapy today.
I was so sorry to hear about your cat, Toby. I know how close people get to their pets. What a terrible shame that he must have ingested something from the lilies. I understand that lilies can be poisonous.
It must feel strange to have given up your works contract, but you will need to rest and to be stress free during chemotherapy.
I do hope you will find chemotherapy easier with the Hickman line.
It probably did you a lot of good in a way to have a good cry. I remember the day I spent at the hospital going through all the procedures to prove the diagnosis of breast cancer. I was there virtually all day with my emotions in turmoil. When I got home I sat on the bed and cried and cried until I could cry no more. I then told myself I just had to get on with it.
What a week you have had, starting chemo, getting a lovely bunch of flowers, and then the flowers causing your cat Toby to die.
Sending you my heart felt sympathy.
Sylvia xxxx
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Hello Carolben.
I was so sorry to know that you have mets in both lungs and I am shocked. I shall never understand the pathway of breast cancer. It is so unpredictable. Thank goodness the nodules are small and that you are going to be treated with some more chemotherapy. I hope everything will go well with the Taxol (paclitaxel). It is a taxane like Taxotere (docetaxel) and so should be very effective.
Mumtobe (Carol) is just about to finish chemotherapy weekly, so she will be able to tell you her experiences. She has found weekly doses much easier.
I was glad to know that you have your family there for support. What kind of port will you have put in? There are vascular ports and Hickman lines among others.
I am sure your emotions will be on a roller coaster and it is good to cry as much as you need. It is better than bottling it up. Keep positive thoughts and tell yourself you are going to get through this and your family must be positive for you.
It is probably a good idea to take time off work. You need as little stress as possible and we all know that chemotherapy takes up a lot of time.
Post here as much as you like. Rant and rave as much as you like. We are all here for you to help you through and comfort you.
Sending all my love and best wishes.
Sylvia xxxx
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Hello linali (Lindsay).
Thank you for your post. I was glad to know that you found the information I posted interesting. There is nothing wrong with believing in the power of goodness.
I was interested to know about what happened with the oncology radiologist. Even though his expertise is in prostate cancer, he can be of use, because somehow these cancers are related. It was interesting to know that yet another oncologist does not believe that cancer markers are a useful test in breast cancer.
It would be very useful if you could establish contact with the head of that research lab, given that her speciality was TNBC in the US.
I was glad to know that Oskar provides you with happiness.
Let us know how you get on with the pain consultant on Friday. Try not to be nervous. Remember these people are here to help us.
We also have daffodils and snow drops coming up and some even blooming, but it is terribly cold.
Tomorrow I have an appointment at the hospital to get a new prosthesis. I always get a funny feeling when I return to the hospital/
Wishing you all the very best.
Love.
Sylvia xxxx
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