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Tinkerbelle
Member
since
01-05-2012
256
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23-11-2017
04:42
Hope nobody minds me starting this new thread but I have found out that I am not the only one who has fallen foul of Capita and the DWP this week. This seems to be a worrying new trend and it is Capita making the decision. Hello all, I haven't been here for a long time so hello to everyone new and old. I had a DS1500 signed by my GP for the renewal of my PIP claim and have been told by the DWP that this is not enough to qualify me for any PIP and I will need to fill in a complete form. The DWP phoned my GP and based on what she told them (which was written in the DS1500) they have decided that I am not 'terminal' for the purpose of awarding benefits and therefore ineligible to claim under special rules. Has anyone else been told that they aren't eligible for special rules even with a DS1500? Tink x
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20-11-2017
09:58
Hello all, I haven't been here for a long time so hello to everyone new and old. I had a DS1500 signed by my GP for the renewal of my PIP claim and have been told by the DWP that this is not enough to qualify me for any PIP and I will need to fill in a complete form. The DWP phoned my GP and based on what she told them (which was written in the DS1500) they have decided that I am not 'terminal' for the purpose of awarding benefits and therefore ineligible to claim under special rules. Has anyone else been told that they aren't eligible for special rules even with a DS1500? Tink x
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01-01-2016
06:08
1 Hug
I'm so saddened to read the news about Belinda - She was always there to help and support others and share her experiences and have a laugh; she will be sorely missed. My condolences to her family and friends. We lit some candles on another forum for ladies who are no longer with us; I shall be relighting mine tonight for Belinda. x
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15-11-2015
01:56
Hi Vrinda, Sorry this is such a late reply; messages sometimes get missed with the way the forum is set up. I am not yet at the point where I would consider stopping treatment but I have thought about when that might be. Are you stuggling at the moment on Kadcyla? When to stop treatment is such a personal decision and only you can know when that might be, but sometimes treatments and side effects take us to a dark place where it is the only option we can see and if we felt better and our side effects were controlled we might see things differently. You will know the right decision for you and whatever you decide I wish you love and strength. Tink x
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08-10-2015
02:34
03-09-2015
08:50
Hi maltomlin, So sorry to hear about your diagnosis, but there are many treatments available and many ladies on here who are living well and have been for years. I'm sure the wonderful ladies on this forum will be along soon and all have a wealth of knowledge and experience to share. You are bound to be in shock at the moment and it takes time to get your head round everything. Once you have a treatment plan in place it becomes a little easier. Have a look on the 'Inspiring News' thread; there are many long-term stories on there. http://forum.breastcancercare.org.uk/t5/Inspiring-news-and-stories/bd-p/4500 It is sometimes hard to see the light when darkness falls, but take heart - there is still light. Hugs - Tink x
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29-07-2015
10:04
Have just come on and read the devastating news about Helen (thank you Chocolates that must have been so hard) - she really was one in a million and helped so many ladies (me included) She was so kind, funny and supportive even when she was having a difficult time herself. It has been a privilage to be part of her cyberworld. She will be so greatly missed - my thoughts and prayers with her family. Rest peacefully Helen x
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25-07-2015
07:40
HI all - I hope everyone is as well as they can be. Chocolates - I hope they get you sorted soon; toothache is horrible. I can't offer any advice re dental treatment as before I was allowed Denosumab I had to have 5 teeth out so not enough left to give problems. I had a maxillofacial scan where you stand up and it goes around your head. Have you had this one already? You have to put your front teeth over a little mouthpiece and for hygiene purposes they put a little rubber sheath over it (like a mini condom) . I'm sure there is mention of dental issues in one of the old threads; perhaps they might put your mind at ease a little bit. Please could you also send my love and healing thoughts to Helen? I'm so sorry to hear that she is so poorly. I have everything crossed for her that this chemo works its magic for her Tink x
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05-07-2015
04:20
Also saw this sad news on another group - This is so sad - my love and thoughts with Bev's family x
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04-07-2015
02:17
Have been away and just got home to be greeted by the good news that you are now home Helen. Rest and let others look after you as you gather strength. Am thinking of you. Gentle hugs, Tink x
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24-06-2015
10:15
So sorry to hear that our lovely Helen is back in hopsital - I hope things improve soon and that she is being looked after well. (((Helen))) x
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19-06-2015
08:10
Hi 2ndtimeunlucky, I have mets in pelvis, spine and skull and in both lungs. FEC can be good and sort the uggers out. Glad you're feeling a bit better. Once you get 'used' to it feels more doable. Anything you want to know just shout out. Thanks for your kind words Springsummer. Tink x
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18-06-2015
04:30
Hi 2ndtimeunlucky, I had FEC chemo last year. I had steroids given on the day and for two days afterwards. Do you have these? I also had anti-sickness if I needed them and they worked quite well. Are you finding that they're not working for you? As Nicky said, If you still feel sick you could phone your bcn (if you have one) and see if they can give you something different. I had some pain but that improved as the treatment went on. I was still able to go out and about for most of the cycles but fatigue did set in on cyles 5 and 6, but this went about three weeks after finishing chemo. Be prepared to possibly feel emotional when your hair starts to leave; it sort of creeps up on you. The 'good' news about FEC is that it kicked little uggers in my lungs right into touch - 'barely discernible' on scan; so hope it's the same for you. I hope the chemo is as kind to you as it can be. Tink x
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15-06-2015
05:28
Great advice ladies - taken on board. x
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15-06-2015
01:32
Thank you ladies for your kind words. I have briefly looked in over the last couple of days to see if things have quietened down and it looks like they have. My reason for wishing to leave was promted by another lady who was leaving and as the one, I felt, with the greater responsibility, I thought it should be me rather than her. On reflection, the posts I commented on were neither meant for me nor meant to be read by me and so my responses were shocking to those on the receiving end and I imagine far from the support they were expecting. What did my foray into the primary forum achieve?. Absolutely nothing apart from upsetting some primary ladies and making them worried about posting their true thoughts in case the pit bull from the secondaries forum descended on them when they weren't looking. I still feel that the main point of my comments was missed. I believe that research into metastatic breast cancer is the way forward for better outcomes for all those with bc. Those outcomes might not be in time for us, but hopefully they will be for those who come after and without awareness that will never happen. I will always check the forums as I like to see how you are all doing and read your news, but I'm not sure it's the right place for me as I'm a bit 'too in your face' and not so good at the other stuff. Love to all Tink x
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13-06-2015
11:35
Just to say, I feel awful about the upset that I have caused and so have made apologies where necessary and I will now be leaving the forums. Goodbye lovely ladies - keep on keeping on. Tink x
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10-06-2015
05:36
Hi Ladies, Lovely post Katie. P You are justly proud of your niece. I hope her research goes well. I know you weren't intending to hurt anyone and were being supportive to another poster. I'm sure your oncologist is lovely and he is right about the media misrepresenting the facts and statistics about breast cancer, but it is usually skewed to show a more 'positive' view than is actually the case. There is hope and knowing the facts and figures does not change that but they were just as true before you knew them as after. Some may feel that giving the true information is scaring people uneccessarily but pretending it is not the truth means living in denial which is fine (I use it myself on occasion) if you need to do that, but please give a thought to our position. Having the truth of your experience denied is soul destroying. I'm sure nobody meant to hurt or offend; it is the negative attitude to our efforts to be heard, from those with the same disease, that hurts so much. Breast Cancer Care supports all ladies/men with breast cancer and I applaud their efforts to include us. I'm just sorry that some people don't think the same. Tink x
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