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Everything posted by Vanessa

  1. Vanessa


    I am home now after my mastectomy. I am doing well and will go back to Royal Free next week to hear how things went and discuss chemo. My lovely daughter Samina who is 23 has insisted on moving back home to cook lovely organic wholefoods for me and she is great fun and we get on like a house on fire. Johny my chap - who I met 2 weeks before discovering my lumps - has been wonderful. He is totally supportive and very loving. He has also not been fazed by my surgery. My cancer is aggressive and what is referred to as "triple negative" which makes it more difficult to prevent a relapse but I have good and positive feelings. Don't forget all you ladies. Make sure you keep an eye on your breasts and do not delay mammograms. Also kick stress up the butt. It really is no good.
  2. Vanessa

    Hand Warmers

    I forgot to say. I got my fuel filled handwarmers by post through the internet.
  3. Vanessa

    Hand Warmers

    I have tried both of those. The rechargeable ones are rubbish, and expensive! However, the fuel filled ones made by a well known lighter company for hunters etc are unbeatable. They stay warm all day and can be refilled over and over again. I cannot reccomend them highly enough.
  4. I have developed breast cancer. It is triple negative, has gone into my lymph glands and is aggressive. As we are unable to have radiotherapy I am hoping that I am eligible for Target surgery, where radiotherapy is delivered at the point of surgery and they would only need to remove the lumps and lymph glands which luckily is practiced at the Royal Free. I am going to have all my treatment there. I am keeping very positive and my new love (only 8 weeks) is remarkably totally supportive. I feel blessed to be surrounded by so much love from family and friends but I have to admit to really horrible feelings of disempowerment. I am used to looking after others and although I tell myself that this is the time to allow others to help me I just feel 1 inch high. Tomorrow I go for a bone scan and due to all kinds of magic and a number of wonderful healthcare professionals all of my other scans and xrays have been completed in record time so hopefully all the info will be with the RF for their Wednesday meeting to decide if I can have the special surgery. If not, they will remove the whole breast, which is okay too. Has anybody else had this problem? If so how was healing after surgery? My skin is very tight and pulls a lot under the arm so I can't imagine how it will heal properly. I am with the breast surgeon on Thursday to hear the decision. Please send good thoughts and/or fairy dust. Love, Vanessa
  5. Vanessa

    Breast Cancer and Scleroderma

    Thank you once again for all your kind support, dear friends. And take note of Barefut - Check those breasts regularly. It is a beautiful day here. I have just tucked into a delicious plate of eggs and bacon and buttered toast and am going to sit down with three girlfriends and a cup of tea to watch X Factor on catch up. Bliss
  6. Vanessa

    Breast Cancer and Scleroderma

    I went for my meeting at Royal Free on Thursday. The decision is that it is best for me to have a full mastectomy as it will offer less chance of the cancer returning. They will remove some or all of my lymph nodes as well and will see at the time of surgery exactly how far it has spread and have more idea of my prognosis. My bone scans CT and MRI all indicated that the rest of my body is unaffected so I am having the surgery on 11th of January. My lovely daughter Samina came (again) with me. I must admit to early discomfort about bringing her along for all of this but when I initially refused her offer she gave me a sit down talking to and explained that she is a 23 year old woman who wants to support her beloved mother. My partner suggested that if I was to have treatment in the new year we should go for a few days to his native Jamaica so that I may meet his mother and sisters and we have already booked flights. Although this may sound strange I feel quite okay about all of this and so blessed to be surrounded by such loving and caring family and friends. It is synchronistic that a new, and I would say the most important, love came into my life at such a time. A man who is standing firm in the face of adversity. A truly first experience in my life. Also a friend who I made from Fat Club who is an outrageously funny young girl of 32 fell on hard times a few weeks ago as she lost her home just as her job came to an end and this is a horrible time to be looking for work. So I said she could come and live with me until things improved. She has a lovely boyfriend who stays here most of the time too. Anyway she is always around with a giggle or two. She swept into my bedroom this morning with a cup of hot Java to wake me up as she was setting off for an interview. She noticed a copy of "Understanding Breast Cancer" on my bed, grabbed it and scowled "No way, Missy. You are absolutely NOT having that one as bedtime reading. 9-5 only for that kind of stuff!!!!" No prizes for guessing her profession. Jenny is a nanny.
  7. Vanessa

    Breast Cancer and Scleroderma

    Thank you all you lovely friends. I have just returned from a complete spin around London - or so it feels. I arrived at Charing Cross Hospital for my bone scan this morning only to be told that my appointment had been cancelled. If anybody had been watching me at the reception desk they would have surely thought that I had lost the plot. Faced with a chippy young receptionist who would not let me speak to the radiologist to try and get my appointment reinstated I was getting redder and redder whilst very quietly and politely BEGGING her to let me have a word. I tried to point out how important it was as the surgeon at RF had asked for the report to be faxed today, as the meeting to decide if I can have Targit surgery is tomorrow and they could not reschedule for another week. Anyway I scooted over to Royal Free and fantastically they managed to slot me in there for tomorrow. I will then return on Thursday to hopefully hear the outcome. So it all turned out well in the end. I have developed a taste for sparkling wine since my Cellcept was stopped last week. Make hay while the sunshine's, I say.
  8. Vanessa

    Dry brittle hair

    Since developing Scleroderma my hair has become very dry and brittle and I have found that as I like to keep it long and I colour it I have to condition and use treatments on a regular basis. I had heard that in Asia mustard oil is often used to soften hair and whilst in my local ethnic food store picked up a pretty big bottle for less than a pound. I put a couple of teaspoons on dry hair and left for an hour before washing and have to say it has really left my hair feeling soft and silky. The one I got was even Jasmine scented.
  9. Vanessa

    Sleep Apnea and CPAP

    Well, as it happens, I suspect that I may have sleep apnea as I often wake with a gasp and kind of feel as though I have forgotten to breathe. Also I have slept badly for years. However as I have very recently embarked on a lovely relationship I don't think I am quite ready to introduce the masked look yet. Something else to look forward to!
  10. Hi Shelley I have only just found your kind replies to my "Tattoo" posting. I have to confess- I was kidding! We have an English advertisement which often makes me chuckle. It shows a smattly dressed lady of about 90 years old with one of those gothic style tattoos encircling her none too firm bicep. That would certainly be my worry although I do think discreet and thoughtful tattoos placed in areas which are not going to seem daft in later years can be very lovely. My 23 year old daughter has a small serpent on her hipbone. Anyway thank you for your ideas on the subject and I agree there is usually a lot more to the whole process than initially meets the eye.
  11. Vanessa

    Hearts and Roses

    I just wanted to share my news with all you special people. I have met a lovely man and we are so happy. Long may it last!!!
  12. Vanessa

    Hearts and Roses

    Thank you so much for your kind wishes all you lovelies. He is coming over this evening and I am cooking him one of my very special curries! As my old ma used to say " The way to a mans heart etc etc ....." Sunny days!
  13. Vanessa

    Hair loss, help!

    Hi Patty, I was losing hair by the brushfull and blocking my shower drain at the onset. My hair also took on a most unattractive wire wool look. I found that putting some ordinary oil in for half an hour or so before shampooing helped. However now thank goodness it seems to have settled down. So it may just be a stage. Fingers crossed Vanessa
  14. Vanessa

    Four years!

    Cogratulations Girl You have a wonderful weekend. Vanessa
  15. Oh no!!! That' my plans totally snookered!
  16. Vanessa

    battery heated gloves

    The very best option I have found is a handwarmer which you put lighter fuel in and it stays warm all day. I have 2 and take them both out with me always. I think they were designed for fishermen, hunters etc. and I bang on about them to all Sclerodermians I meet. They are much better than the ones you put in the microwave in that you can keep them running all day. I ordered mine off the internet but the problem is I think we are supposed to avoid most brand names on the forum. May I say that they are made by a well known lighter manufacturer whose name begins with Z---- and swear, scouts honour, that I do not have shares in the company. You may send me a PM (just click on the envelope icon at the left of my forum message) for the brand name, if you want it. Anyway wrap up well, Vanessa
  17. Vanessa

    Arm issues and steroid shot

    I would like to add to that too I reckon you are a very special gal Amanda,and you certainly inspire me.
  18. Vanessa

    Don't fit norm of CREST

    Hi Lucy I have Diffuse Scleroderma and I do have skin discolouration. My skin appears darker almost tanned on my arms legs and neck. Also, I too am no expert, but I understood that Limited Sclero did not involve thighs. Hope this helps Vanessa
  19. Vanessa

    Depression: The Precursor of Disease

    I so agree with this one. I had not realised (even though we are always being told) how much stress and depression can affect the body until the onset of my Diffuse Scleroderma which happened at a time when I was at my most traumatised. I now make a point of reminding my nearest and dearest to look after themselves as much as possible. Hindsight.
  20. Vanessa

    Is this pre-scleroderma?

    Hi Krassau And welcome to the forum. I have Diffuse Scleroderma which showed first signs last May and developed pretty quickly. My initial symptoms were numbness, pins and needles and Raynauds accompanied by a texture of small lumps, not unlike cottage cheese, in fleshy areas such as under my arms, thighs etc. They have now gone.Is this the kind of thing you have? Also my fingers itched, swelled and stiffened but I had no blood indicators. The rheumatologist suggested possible Scleroderma and when I looked it up on the internet, after my first forays into horror filled sites, I found this one. An invaluable piece of advice (among many others) that I picked up here was to get myself referred to a specialist centre. This has made a world of difference. Take care.
  21. Vanessa

    ANA and RNA

    Thanks Jeannie and Shelley for the feedback. I do loads of exercises for my hands, face and pilates and stretches for the rest of my bod. I am sure all that really helps. Sorry to hear about the hernia Debs and best of luck with the op next month. Just glimpsed a bit of sunshine. Delightful. Mind you its getting too nippy now. Plays havoc with the Raynaud's.
  22. Vanessa

    ANA and RNA

    Hi all I have not visited the site for a little while as I have needed to hide the old head under the duvet for a bit. I cannot seem to quite grasp the whole ANA and RNA subject in spite of looking at links. I think I am just a bit fuddled.I am also finding it difficult to use the computer for any length of time as it really hurts my hands and seems to make them quickly become swollen. Annoying because I have invested in an ergonomic mouse and even that isnt helping a lot. Can you please explain my results ANA +ve >1:100 fine speckled RNA polymerase +ve Thanks
  23. My rheumatolagist at the local hospital put me on Diclafenac and when I developed stomach pains I was prescribed Lansoprazole. I changed painkillers and since January have taken only Paracetamol but I have remained on the lansoprazole. I dont have any eosophagal symptoms at all (touch wood) so is it normal to remain on the acid reflux medication? Or is it used as a preventative? I would be most grateful for some advice. Vanessa
  24. Vanessa

    Farewell lovely Scandinavian Cruise

    Hi all, I had good news today in that the swab showed no growth so I have been able to stop the strong antibiotics. It was a false alarm but although it meant I probably could have gone on hols I am happy that I did what the doctor said as it really is better to be safe than sorry. Its really lovely weather and I have had a good couple of days and will go down to Brighton to visit my daughter for a couple of days later this week. Also I have booked a trip to St. Ives, Cornwall for later so really looking forward to that. Those of you on Cellcept- how low are you allowed to go with your white blood count? The paperwork said 3.5 but I was told I could go down to 3.0 which was where I was when stopped last time. It would be interesting to know.
  25. I should right now be on my way to Southampton ready for my exciting cruise. But what did stupid Vanessa do? On Thursday afternoon I cleaned out my fish tank filtration system so that all would be in good order for neighbour who was on fish duty whilst I took to my life on the ocean waves. I did not factor in to the equation that my blood count was low, courtesy of Cellcept, so didn't even think of putting on rubber gloves. Later that evening a strange weeping lesion appeared followed by several more the next day. A visit to the doctor yesterday afternoon (after I had finished my holiday packing) confirmed that I was going nowhere. He took a swab and started me on a cocktail of heavy duty antibiotics. So annoying as I feel okay apart from being really guilty for my dear friend who was coming with me. She downright refused to go without me in spite of my begging so we will enjoy the lovely weather here instead. On the plus side I may be able to have an earlier restart at the Cellcept. Royal Free are very keen for me to keep retrying even though my blood count has dropped too low twice and I have had to stop and start. I am surprised that they feel it is worth restarting a third time. Have others found that they have been able to tolerate the drug after several tries? Vanessa