golightly - thanks for your good wishes re: my chemo. Side effects are a bit troublesome just now and I’m knackered all the time. I expected that as I had Epirubicin and then CMF the last time. I’m to have Taxotere x3 and then CT. If I’m responding then for another 3 Taxotere. Got my wig yesterday. Nicer than my own hair but won’t be too comfy especially in the summer months. Going to headstrong on Friday to learn how to wear the scarves. That should be interesting as I’m not very good at things like that. Give me a pair of knitting needles or a crochet hook and some wool and I’ll make something but not much good at tying bows,etc. Take care everyone. xx
Hi all,
Hope things going as well as they can for us all. Just a quick one to ask if anyone has heard anything from trash recently? She was having a rough ride in hospital and has been very quiet lately - any one know how she’s doing?
I had an MRI to look at why pain is worse but not had results yet.Am hoping it’s just one of those things as my CT was stable last time.
Val, hope your daughters appt goes well. I’m in the horrible position at the moment of waiting to see what the plan is for my youngest sister who has just been dx primary bc, that is 3 of us out of 4 girls!
Dawn, how is your daughter? It must be hard seeing her struggling with difficult choices but it sounds like she has a good consultant and it dounds like she has inherited her mums fighting spirit!
Miserable day here but at least the garden got some water!
Val and Dawn - thinking about yout daughters, I have two sons and although my cancer scares me i’m more scared for them and how they will feel when they lose their mum. They are 23 and 17 but still feel like my wee babies! the thought of them getting a similar illness terrifies me and i completely understand your feelings. My hopeful thoughts to you both.
On another subject, i contacted macmillan advisor re dla and ds1500 and she seemed hesitant and asked me to check with my onc if they’d issue this. My breast care nurse contacted me and told me that my onc would not sign this form for breast cancer and bone mets. The BCC nurse also told me that people with breast cancer and bone mets . don’t get these forms as our prognosis is better than people with liver cancer, bowel cancer, etc. I explained that i’d read of many cases like me getting dla under the special rules, on these forums but she still said that she didn’t think this happened.I walk with an elbow crutch and have multiple skeletal lesions. i struggle to walk further than a few yards without it hurting, can’t lift a laptop or oven tray, do my garden, etc. I recently tried to return to work but it was too much for me. I don’t get out very much now and hate being like this but now feel like a bit of a scrounger for asking for the ds1500. Does anyone think i should contact my gp practice about the ds1500?
Hi livlassie, I get DLA and ESA under the special rules after my onc signed the DS1500. It is really up to the discretion of the consultant. He stressed at the time that it did not mean I only had 6 months to live. I guess it more to do with being stage 4. Who knows what can happen at this point. My doctors seem to be determined to keep on top of this thing for years, but no one can be sure. Meanwhile, it’s debilitating and will probs go through times when it will be worse and need more treatment and more disabling treatment than at others.
It sounds as if you are more immobile than I am. I had a hip replacement, so that immobilised me for some time, but things have improved since then.
I think it is well worth you approaching your GP to see if s/he will sign the form. Good luck.
I think they have tightened up and changed the rules recently with the new government guidelines. You can still apply for the DLA and receive the higher rate without using the “only 6 months rule” form.
I receive the higher rate but am still concerned that this will change in the future even although I have physically deteriorated since first being awarded DLA. It is scary for me as I have a car throught the Mobility Scheme and if I loose the higher rate not only will I be worse off but I will lose my car to get me around and so my independence and way of life will become unbearable for me.
The McMillan Nurses should still be able to help you complete the extremely long application form. You need to tell them exactly how restricted your mobiltiy is and how much help you need to do normal things like getting dressed, bathing or cooking meals etc. If you have any questions feel free to PM me. Val
I had a long chat with my MP about the new DLA rules as I will be due for review early next year.I too have a motability car and explained the implications of losing the higher rate.He assured me that “people like me” should not be affected.I tried to explain that the decisions are being made by DWP not by medical specialists but he seemed to think they understood the forms.I am sure mp’s do not know what is going on themselves.He assured me if any of his constituents had anly problems he would represent them and argue their case.I will cetainly hold him to it if necessary but I think there is a lot more to be done to let the decision makers understand the implications of these new rules.
I agree Lucinda. I may need to contact my own MP. It is the not knowing that irritates me. I love my car and although some of my DLA allowance is taken to cover the car I just love the freedom it gives me. My Blue Badge is another thing I really appreciate as it makes shopping and getting around so much easier. I really value these 2 things and dread to think of losing either. I tried to walk without my stick yesterday while I was in M & S but it is too difficult and my leg aches. Still I am seeing the Radiologist team on Monday to discuss the benefits or not of more radiotherapy. I seem to have spent more time in the blasted hospital since I got home last Thursday. But I am so lucky as I live very close to the hospital about a 15 minute drive away. Some poor patients travel from all over Scotland to see their Oncologists. Love to all Bone mets ladies. Val
I too, have a Motability Car and Blue Badge and am also very anxious about losing my car. I would not be able to afford another one, because my income has nose dived, since having to take ill health retirement, due to this bloody disease. If you look at the DWP web site - sorry don’t know how to post link - they state that they have to make savings of 20%. In effect, their aim is to ensure that they cut those in receipt of the current DLA - to be called a Personal Independence Payment - by half a million people! I’m sure that this will affect quite a few of us. Very worrying.
Isobel
P.S Hi Val!
Thanks to you all for your comments. I approached the macmillan advice team again and spoke to someone who had a very different attitude. He took all my details and less than 24 hours later he had gone to my gp practice and picked up the ds1500. I am so grateful to him.
My car is on it’s last legs and i dread to think what life would be like without acccess to a car, so i’m hoping to get the high mobility component too.
Some days are a real struggle but today feels a bit better because of that Mcmillan advisor.
Fingers crossed that we all get the benefits we deserve and keep them for as long as we need them.
I too am lucky as i am very close to my hospital but it is awful for some of us who have to travel long distances. expensive and both mentally and physically draining.
Does anyone else have an ambivalent attitude towards their walking sticks/crutches. I hate my crutch as it flags up my disability to the world but am really glad i have it too and it’s my best friend some days!
Louisa! My crutches have been thrown across the room in absolute rage! They have helped me and hindered me! Now I only need one but can stagger around the house without it sometimes. Feel odd without it and quite worried if cant remember which room I’ve left it in whilst staggering! Totally empathise! XxxxBy the way well done re DLA. I can’t see them turning you down with ds1500. I too love my motability car, which is automatic and I couldn’t afford. I love my blue badge too. With my DLA I really get to keep my sanity and independence. I would be isolated and depressed without it! Really think that I too be bombarding the prime ministers office with emails if we are threatened with withdrawal of DLA. I really think they are looking for fraudsters, not us I really hope. Hi to everyone and happy weekend to you all xx
Louisa,
Glad you’ve found a helpful advisor, I was going to suggest getting the form done by your GP as that’s who did mine via Mac nurse. Good luck.
Yes, I think we are all concerned about DLA/PIP. I’m going to try to put a link to the Leonard Cheshire Foundation. They have got a questionairre you can complete about impacts of losing DLA.I’ve done mine, think if as many of us as possible have our say (particularly as Secondary women)then at least they will have info to support campaigns. lcdisability.org/?lid=14539
can anyone help… I applied for DLA with form DS1500 and had a call from
Benefits Agency to ask if I needed care. Advised that on bad days my partner helped
look after me any kids. Received form DLA343 PART 2A Yesterday and was asked to fill
in what care needs I had. What does this mean and is this a yes or
no situation? I understood that under special rules you didn’t need to fill
in care needs etc. Thanks in advance if anyone knows.
Thanks for posting that Julie. I have completed the questions.
hopefully campaigns will do some good in pointing out how secondary suffers will be affected by the new rules.
It looks as though they are trying to bring in a similar system to the one they have always used for attendance allowance.The problem with a points system is that they award points for specific conditions and does not necessarily cover things you need help with.
I will definately need help from macmillan when I get my review.
In case any of you have missed this sad news I thought I would just post here to say that SusieV also know as Sue passed away this morning. Things had deteriorated very quickly and her friend Liz has kept us up to date with news for the past week or so. Sue was a beautiful supportive lady who died far too young. Val
I hope everyone is feeling good? Sorry to hear about Sue, never got to meet her here as I only just joined.
I posted a few weeks ago having recently just been diagnosed of metastatic BC. A letter I just got from my oncologist notes that the biopsy shows a grade 2 invasive Ductal Carcinoma. ER8 PR8 (er&pr+) with multiple bone metastasis and deranged liver function tests. He noted Liver is palpable 2cm below the costal margin, though CT scan and Ultrasound shows nothing on the liver. Does anyone know what this means?
He also noted I have spinal tenderness over T1/T2 and L3/L4. What on earth does this mean?
I currently have back, rib and neck pain which I take pain killers for though not very effective. I am currently on weekly taxol and 3weekly bone strengthener. Does anyone know how long it’ll take for the bone pain to stop or heal on taxol or the bone strengthener?
Also, my mum advises I take Essiac tea and cottage cheese/flaxseed oil in the mornings. Does this help fight the disease at all?
Any Inputs will be well appreciated and so sorry for the long msge.
Hello Itiswell, There are lots of thing out there to help with bone pain. I have extensive bone mets and take a variety of painkillers which were introduced slowely to me over the years. Radiotherapy is another possibility. I have pain patches called lidocaine but did not start with them. I suggest you contact your hospital doctor and/or Breast Care Nurse to have a chat. For breakthrough paon there is alos liquid Oromorph but it si up to your GP and Oncologist to decide what is best for you. I have been on biphosphonates for 3 years now, from Pamidronate to Bonndronate(the pill version) and now I am having a Zolidronate infusion ( But these drugs all work in the same way).
As for the T1/T2 and L3//L4…these are areas on your back and the T is the thorax region and the L is the lumber region. I suppose the tenderness just means that those areas are a bit painful to you.
If I can answer any other questions as you go along please just ask. I don’t know all the answers but someone on this thread probably will.
I am not sure what painkillers you do take but there is MST, Gabapentin for nerve pain, Amitrytlene for Sciatica and Diclophenac. But everyone has different needs and different pills work for some people and not for others. If the pain is a major problem for you there may be a Pain Specialist team that some to your hospital that may be abe to sort you out.
Best wishes and keep posting to let us know how you are doing. Love Val
Hi Itiswell, sorry you have had to join us on here. Hopefully, you will find lots of support on this thread, as I have. Sometimes it’s useful just to know there is someone out there listening even if they cannot answer the questions.
My L4 vertebra has been a cause for concern lately. It has not caused me any pain that I have been aware of. That sounds strange, but I have had a hip replavpcement which still causes some discomfort and I sometimes wonder if that has also been down to nerve pain from the vertebra. The L4 vertebra is between waist height and bum crack, if you’ll excuse language! L3 would be the next one up. I’m not sure about the thoracic ones. Despite not having any clearly identified pain I have just had a course of radiotherapy to L4 to consolidate it and prevent the possibility of it compressing any nerves. This would also help with any pain, so might be the way to go for you. I have also been having the bone strengthening infusions 6 weekly - the bisphosphonate pamidronate. I think that should have an effect upon your pain over time as it improves the bone health. With radiotherapy pain tends to get worse before it gets better.
It would be a good idea for you to sort out pain meds. Things seem so much better when you are not having to deal with pain on top of everything else.