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Sandy B

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About Sandy B

  • Rank
    Silver Member

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  • Location
    Abingdon, Oxfordshire, UK
  1. Back from Norfolk...

    Hi Chockers, My partner's family live in Thetford, Norfolk so we have frequent visits. Love visiting Southwold on the coast and Diss is very pretty. Sandy B
  2. Back from Norfolk...

    Hi All, Had a lovely week in Norfolk with Kev's family, manage to get down to the coast one day and Bury St. Edmunds another day. Unfortunately I was ill when I came back; I had a chest infection (but luckily it didn't happen while I was away). Also I had been weened right off the dexamethasone the week before, which may have added dramatically to my brain problems or the brain was swelling, but I became a jibbering idiot. I thought I knew what I wanted to say, but I just couldn't get the words out or the wrong words out, so it was very frustrating for me and who ever was at the receiving end!!! Things are slowly improving, with the occasional hiccup where my mind goes completely blank, but now the family understands what the problem is, they know if they wait long enough, I manage to spit it out!!! I wish I could do a re-run of some of the conversations, I'm sure they must have been very funny, especially the blank expressions on families faces. Hope this is finding you all as well as possible. Regards Sandy B
  3. Hair Loss

    Hi Vanessa, I have to second and third that motion, radical surgery is such a major thing to go through and the fact that you are here and still able to give support to others is fantastic. Regards Sandy B
  4. Hair Loss

    Hi all, Well round the house and with my family and friends I'm quite happy to go au naturale, I haven't got a problem with the way I look, having lost my hair last year, I got used to it. But when I am out I have to cover up, especially if it is sunny because the scalp is extra sensitive. We had a fantastic day yesterday, the BBQ went really well and the weather was fantastic and I ate like a horse, which is down to the steroids which I'm on, so funnily enough I look really healthy at the moment!!! Tomorrow we have a day planned out with the family, we're taking my granddaughter to a Wildlife Park, which I'm really looking forward to and my sons are coming along too, as well as daughter, so should be another good day. In a week's time we are off to Norfolk to visit Kev's family, which will mean several days out, so that will be another week to look forward. Just been awarded Disability Living Allowance, which is a relief and now we can apply for carers allowance, so hopefully we will get that too. It only took three weeks for the DLA to come through under special circumstances, which is the terminal side of things, but it is one less worry for us. Hope you are all enjoying the sunshine and keeping as well as can be expected. Regards Sandy B
  5. Worsening esophageal symptoms

    Hi, I guess I am one of the unlucky ones, but I have to say how important it is to follow these symptoms up. I was diagnosed with Barrett's Oesophagus last April, which turned out to be cancerous and now I have secondary tumours of the brain and lungs and my life expectancy is between three and twelve months. I'm not saying this to scare you, but to encourage you to have all the tests as soon as possible. I was unlucky in that I had been having problems for some time and when I did see a consultant (not my normal one) he dismissed my symptoms and I went a further five months before the cancer was diagnosed. I sincerely hope your tests when you have them done, go well. Regards Sandy B
  6. Hair Loss

    Hi All, Well it had to happen, all my hair has dropped out after radiotherapy. I had hoped it would just thin a little, but I guess I have to look at it as it's buying me a little bit of more time. I'm feeling very tired and breathless at the moment, again side effects of the radiotherapy, but no seizures which is good. Still managing to get out and about with the aid of a wheelchair, so days out planned with the family and a huge family BBQ next weekend, so will keep you posted. Regards Sandy B
  7. Radiotherapy

    Hi Sherrytrifle. I think I'll be saying a lot more than 'Oy, I want a word with you', I think I shall give him a lecture, hehe!!! I wasn't ready to go yet!!! Regards Sandy B
  8. Radiotherapy

    Hi Amanda. Apparently radiotherapy makes your skin very very sensitive and sore, so exposing the treated area to the sun is a big no no and it is a permanent feature! As I'm only having radiotherapy to the brain, just the scalp area, then a sun hat will come in handy, but trust me to start treatment when we have our first bit of sunshine for months!!! Regards Sandy B
  9. Cancer has returned...

    Thank you Lynn. I am holding on and I will put up a fight just as long as possible and spend every last moment I possibly can with my family. Every day I now value and treasure as if it is my last. Hopefully I will have several months left but one can't tell, but I truly appreciate everybodys' kind words and how difficult it is to know what to say in such circumstances, Regards Sandy B
  10. Radiotherapy

    Had my first lot of radiotherapy yesterday, I'm glad to say it all went well and I don't know what I was making all the fuss about. It took longer to clamp the face mask to scanner and make sure it was in the right position than it did for the radiotherapy itself. So I promise no more whingeing about it, just got to wait for it all to kick in, but no more going out in the sun for me, ever, can I whinge about that?!! Regards Sandy B
  11. Cancer has returned...

    Hi All, Well I have had a busy two weeks getting things sorted, Will, funeral and other paperwork and it's remarkably liberating, I don't have to worry now its all sorted. After initially crying every day for a week, acceptance has come and now I can get on with living and enjoying what little time I have. I saw the oncologist last week and she thinks I have upwards of six months rather than less which is good. I was measured up for a radiotherapy mask Friday and I start treatment this coming Wednesday. Can't say I am looking forward to it as they have clamp the face mask with me in it to the scanner, but it has to be done. The family are all rallying round me to help me as much as possible and have promised to do everything possible to keep me at home. It's been hard because we all have entered into a grieving process, they are grieving for me and I for them, but my family being my family we still manage to have a few laughs along the way so it's not all going to be about pain and sorrow. Anyway I'm having a good day, my brothers and partner are painting the outside of the house, something I wanted to see done. Will keep you all posted how the radiotherapy goes, apparently it can cause symptoms to get worse before they improve so I might have seizures etc. but we'll cross that bridge when we come to it. Hope my fellow sclerodermians are all fairing well. Regards Sandy B
  12. Cancer has returned...

    Dear all, The cancer has returned. Having got over the oesophageal cancer last year, I now have secondaries. Six tumours in the lungs and two on the brain. I know treatment being talked about is only palliative care. Fortunately I'm not in too much discomfort at the moment compared to the surgery I had done last year, but certainly things have progressed in the last four to five weeks and that could change rapidly. I am still trying to get my head round it, coming to terms with having to say goodbye to every body I have loved and known in my life time. It's tricky, I have the time to say I love them and how much they mean to me, but it is very, very difficult all the same, but at least I have the option. Time scale is three to twelve months, but how long is a ball of string? I would like to think I could last out a lot longer, but the way things have progressed recently, I think not. My brain is very addled, I get very confused and it stands to get a lot worse, but I thought I would come along and just put you in the picture, but for how much longer I don't know as I had to think really hard about turning the laptop on and using remotes etc. I just hope this is all making sense and not too much jibberish. I just wanted to say a big thankyou for all the support this site has offered me, it was the one thing that made a major difference to the scleroderma journey, not having to walk it alone. Fond regards Sandy B
  13. A less than stellar year so far!

    Hi, Just wanted to say welcome back after your mega time!!! You have certainly been through it the last few months and I hope you make a full recovery soon, but from what you say, it may just take a bit more time, so keep on smiling. Have missed your witty posts so it is good to have you back. Regards Sandy B
  14. Hi All, Had the stomach stretch yesterday, seemed to go well. Discussed the possibility of a lung tumour and have an appointment for a Positron Emission Tomography (PET) scan tomorrow. Things are moving pretty fast, but I guess that's better than slow in this case. Feel a bit twitchy, but that's understandable. Will let you know when I know any more. Regards Sandy B
  15. Hi All, Well, had my first bit of therapy on Thursday in the way of my daughter coming to stay and opening up for the first time, how bad last year really was at times. My daughter actually knew and had fought the temptation to go behind my back and have a word with nursing staff. Well after many, many tears it was all out in the open, I do feel better for it, sharing it, but I know that that isn't the end of it, there are still more tears to come.... Since the surgery and all the chest problems I encountered, I pursued my chest doctor relentlessly about my breathing and continuous cough and pain. I finally had a phone call from him Friday regarding the latest more detailed scan. On a good note although there is a bit more scarring, it doesn't show any current signs of active scleroderma in my chest and the pleural effusion has improved. What it does show is a nodule on my lung, which probably isn't so good. Fortunately for me the chest consultant has emailed my surgeon who carried out the oesophagectomy and as I am due to see him this coming Tuesday to have the bottom of my stomach stretched, I haven't got long to wait. This could be an early indication of an infection or the start of a tumour. I guess if I hadn't pursued the chest problems then I might not be finding this out until a later date. Trying to keep an open mind until I have some definite answers, but will keep you informed as and when.... Regards Sandy B
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