Mackers, sorry to hear you had a crappy week. Mine has not been too good either but for different reasons although nothing to do with BC.
I was given DLA under special rules in 2009. I am due to be reviewed in 2012. McMillan have told me that DLA is being tightened up and if I continue to remain stable, it will probably be stopped. I think this is kind of weird cos I have not suddenly got better, its just that it has not progressed as quickly as they anticipated and things could change at any time, especially having bone and liver mets.
If the Doc said, āAlex we have reviewed your case and are satisfied that your condition is now chronic and not terminalā Iād be on the phone like a shot to the DLA to cancel the claim.
I think someone should starting ārappingā about Govt cutting benefits for the terminally ill, post it on āYou Tubeā and send it viral!!
I was upset for a long time worrying about the review of DLA coming up. It really got to me. Nothing has changed but I have put the worry on the back burner, hard though that may be. Have decided I will cross that bridge when I come to it. I read with interest everyoneās comments and look to see if you have managed to get DLA renewed. We have enough to deal with as it is and do not need this added worry on top of everything else we have to deal with. Best of luck all of you who have this added worry too. Val
Your bone mets do effect your life and your mobility and you hv to hve your pain managed therefore I canāt see why you wouldnāt be entitled to the Dla. Itās all about how your illness effects your personal care and mobilityā¦according to the lady at the Dla itās not what illness you hv itās how it impacts on your lifeā¦
Im telling you being barmy is the way to go and the Dla are sending me that way!!!
Some of us wrote a few months ago about getting that review letter!! and we had to name who they could go to for confirmation i.e. GP, Macmillan, Oncologist or other as they would send them a form to complete. I suggested that we thought carefully who we said was the preferred person and I wonder now if it would make sense to contact that individual to say that you had received the letter and you were a bit concerned about it.
I think those of us that did receive that letter had no problem with our DLA being continued.
I wonder if anyone noticed on the letter that came out in April this year telling us how much we would be getting for the coming tax year one little word!!
Mine said: You are entitled to:
higher rate care component for help with personal care from 20/04/2006 (in my case) INDEFINITELY
and the same statement for the mobility component.
Just reading the comments about applying for DLA. At this moment in time I am able to wash, dress and go to work so I donāt feel I would get the any money. I remember back in March when I was trying to get holiday insurance when you would go through all questions and at the end either you would be turned down or they would try and charge a ridiulous about amount of money one quoted me a thousand pound. I did manage to get insured with Insure Pink they only charged me for my last holiday Ā£63 when I went to Cyprus in June. When I see my Consultant on Tuesday about reconstruction hopefully my Care nurse will be there and I will ask her about applying for DLA. Hubby has just arrived from work I will go down and start lunch. Speak to you all soon.
Dear Dawn, I just looked out the letter you mentioned above (for myself). The wording is exactly the same as on yours. However the previous yearly letters read exactly the same. To me it looks like they just have a standard letter and they fill in the dates etc. So I am not convinced that it means what we would both like it to mean!
I think the crackdown will include all of us but as they have so many peopleās benefit claims to go through. I think the whole system may grind to a halt as the clerical staff who deal with the claim work through all the completed forms. Most will not have a clue about cancer patients and just how difficult our lives are and just how much our illness takes over every living minute of every day.
It is not until I am in the company of friends my own age that I realise just how much my illness imposes on my everyday life. I was out with friends on Friday and had to rest the whole of yesterday as I was physically and mentally drained ( and no alcohol passed my lips!). Perhaps that is the problem and where I went wrong!!!
I am still waiting for the postman to deliver the dreaded review letter. It would be lovely to know from the horseās mouth that we do not need to concern ourselves and that the wording of the letter is exactly as it reads and that we have the award INDEFINITELY. It would make such a difference to have peace of mind. Hugs from Val
Iām really quite shocked to read that people are having their applications under DS1500 rules turned down / or are having their DLA (that was claimed under DS 1500), removed after three years. Surely, the whole point of DS 1500 is that it is based on the opinion of a qualified medical practitioner, so how can the DWP possibly do this?.
The fact is that if you have a diagnosis of secondary cancer, your are terminally ill, because there is no cure. while you might feel fit, and could even be running marathons, you could still be dead six months later (as happened to that fantastic fund raiser, who died a couple of years ago). If this is happening, are BCC aware of it, and if so are they campaigning to stop it?
Just gonna chip in with what has been decided with my claim for DLA, as you will of read on my posts on the DLA thread I have been experiencing problems trying to claim DLA, they have finally awarded me DLA for one year without applying the special rules (even tho my Dr signed i a DS1500 which they said was inappropriate!!!) this has been going on since april this year and finally they have given me High rate mobility with medium rate care. They are tightening up on these claims really stupid to think that you pay into a system all your life and when you need it most and are genuinely in dire straits you are treated like your some sort of benefit cheat!!! its totally ridiculous.
hi
when I first applied for dla I was granted the lower rate care only.When I started chemo I reapplied, but not under special rules,and was granted the higher care rate and higher mobility rate.
This was granted indefineately.I too would like to know what this means.
I did write down everything I felt and how it was at worse, and asked them to contact my onc.Not sure if age comes into it as I was 60 when I applied.My worry is what happens at 65 as attendance allowance only seems to be assessed on toilet needs!I intend to be around long enough to claim it so would be interested on the experience of anyone over 65.
Sarahlousie so pleased you have been granted dla,if only short-term.
As so many people are having problems maybe someone will be able to take up the case and get clarity for us.
Linda x
She is arranging a Bone Scan plus a CT scan to my head. She gave me a full examintation especially my problem leg. Thus the scans. Discussed physiotherapy to help with leg.
At my request I am going back to Zolidronate and stopping Bondronate.
I need my painkillers as soon as I get up in the morning but have to delay because of the Bondronate. It will mean visiting the ward 3 weekly though. But hopefullly will suit me better.
Had bloods done at GP last week. Nurse took more today. HB down to 9. May be because bone marrow not be functioning properly. Depending on results, may just need iron tablets. If it was 8 it would be a Blood Transfusion.
Spoke to her re DLA and DS1500.Will let you know when I hear back about that one. I also spoke to Secondary Breast Care Nurse and she is speaking to McMillan nurses and getting back to me.
At my request she showed me results of recent MRI scans and Xrays. Interesting to see just how much of my bones are affected and what it showed up.
She was very patient and kind and did not dismiss my concerns and worries.
Good news is NO CHEMO ( for now). Perhaps radiotherapy if Bone scans show up any hot spots.
Very weary. Thanks for listening and allowing me to share my news with you. Love to all Val
Glad you got a few things sorted out today, I know it is a nuisance having to go to the clinic every three weeks, but it will save the hassle every morning!
I was shocked when I saw my bone scan,and realised how many of my bones were affected,but did you know that they donāt scan below the knee as it is quite uncommon to get it there, but I have it in my lower leg,and the onc said it was probably there from the beginning,thatās when he told me about the scans. I know you have had x-rays on your leg, but sometimes they donāt show cancer, they didnāt show anything when I had my ribs x-rayed ,but I had extensive mets there! I really hope you get good results from your scans, maybe would be an idea to make sure they do below the knee!
Havenāt posted for a while, but have been following all of your progress. Big hugs to everyone!!
Have been for latest PET scan today (my 6th in just over a year!) & results on Thursday so am feeling very emotional & miserable at the moment. Just donāt know what to expect from this scan - have got on well with 6 cycles of Capecitabine & would like to stay on it, but it just seems when I really want something to happen it doesnāt!
Feeling fed-up to back teeth of this disease & all the heartache it brings
Hi all
Just read your note Scottish Lass. Of course we all want to support you at any time you need to offload.We are all going through this and have highs and lowsā¦ You have given out so much support and encouraging words and given hope on this forum.I get alot of support from your warm messages.
These Oncology appointments are so draining.
By the way I have not read the book you mentioned ā¦concentration so appalling at the moment I cant manage much at the moment.
Dugsy ā¦I am at the same stage as youā¦ cycle 6,on Capecitabine.I have been led to beleive that if it is working the Doctor will keep you on it. Perhaps tweek the dosage depending on side effects and response.I would be surprised if they would stop it. I suggest you tell them what your worries are when you see them Thursday.
I also get my 6 monthly PET scan result on Thurs and will let you know how I get on. Having a massage in the morning to boost me up for the results.Remember Dugsy there are alot of treatments out there and alot of women are living with this for a very long time. Take care and try and give yourself a treat.
Esha Ness
Thanks Esha Ness - I knew we were at about the same stage with treatment - how have you found the Capecitabine? I have got on well with it & just hope I can continue with it. My onc has suggested keeping me on it, if itās still working & thatās whatās worrying me, the āifā. The last scan showed all stable but my lower back has been a bit achey on & off, not painful & not all the time, but thatās my concern.
I just want something to go my way for once & at the moment I donāt feel very confident Sorry for moaning, I just hate this waiting for results.
I will be keeping everything crossed for us both on Thursday & hope these tablets are still doing their good work.
Now about your Capcitabine. I have been on that drug on 2 occasions. I was on it first around 4 years ago or more ( would need to look up my diary as memory shot to pieces!) and it worked well for me. I then had a break for 18months and went back on it again for another 6months or so. Unfortunately I caused me severe hand and foot problems. But it did do the job well and my Tumour markers reduced after each cycle. I have not been on Capacitabine for about 2 years now and I am still doing ok. What I am trying to say is do not worry if this chemo does need to stop for a while as you wonāt go downhill fast. I was told last year by my Oncologist that if I started chemo again it could either be Capacitabine or she could try Vinoreline (not sure spelling) but SusieV and some other ladies are on that one right now.
So do not worry about stopping as often there are other drugs in the pipeline. Good luck with your results. Kep me posted on your results.
I am feeling rested today. Have travelled over to the west coast to Gourock as we are going to wach the Tall Ships sailing down the river. Love Val
Not been on here for a while as very busy at the moment and the weather has been good so I am out as much as possible.
As many of you know I have mets in my liver and lungs as well as my bones so I am never quite sure where I should post - mind you, I have always wanted to be the centre of attention at any party so I will post on whichever thread takes my fancy!!! Anyway, what has been happening with meā¦
Yes, as Val says I have had 8 doses of Capecitabine with Vinorelbine from last November through to the beginning of May this year. Main side effect was blistering on my feet. I have just started back on Capecitabine alone, due back at hospital this Thursday for my second dose.
My scan in January showed good reductions, scan in March showed marginal reduction and scan in May showed mets were stable. I wasnāt terribly impressed butā¦ I think stable is good now.
Last week I had my referral appointment at Christies (Manchester) for a second opinion and also to see if there were any trials of wonder drugs (you see, still hoping for a cure - canāt believe they canāt cure me!!!). The Dr there was smashing. She had actually read through my file and didnāt need me to tell her what had happened - amazing!!! and impressive!. Outcome is just what I wanted. Confirmation that I stay on Capecitabine for as long as it works for me with a scan in September to see how I am doing with it. Any progression will mean I am given the Taxane drugs again that I had at the outset eg Taxol/FEC. But I have decided that the Capecitabine WILL work so I am not worrying about that.
Right, off for my walk with the dog with my friend and a picnic. A bit overcast today here but warm and DRY - not bad for the North West!
Thinking of you all, especially you Val, Liz and I are thinking of a visit to you in August after my hols (off to France on SUnday for 2 weeks in the van - canāt wait).
HELP! Not posted for a while, Am just beginning 3rd cycle of capecitabine and lapatanib. Tms went up by 100 or so after 1st cycle, and by 50 ish after last cycle. We are hoping that next bloods will show a slowing down in progress, I was really hoping this combo would work after tax stopped doing its stuff. I feel well apart from thatā¦ some cyber hugs please, I am feeling wobbly. Oh, and the lump has got bigger too, although onc says that could be inflamation. Iāll take thatā¦
x sarah
Hello Ladies, I havnāt posted for a while and have just been catching up on some of your posts. I think itās an absolute disgrace that some people are having such problems trying to claim DLA!! I was lucky enough to get full care and mobility awarded for three years, but no doubt if iām lucky enough to still be around when itās time to reclaim it will be much more difficult by then.
I think sometimes it dedpends on the individual who makes the decision because otherwise we would all be granted the same donāt you think? and surely that canāt be right. I see it as something I am entitled to as I am only forty two and itās unlikely I will be around long enough to get my pension!! which I think you should also be able to get early if your diagnosed terminaly ill.
Iāve been interested to read about all the different treatments you are all having and have had over the years and how you have coped with them.
I had a scan yesterday after four treatments of tax and will get results next week, iām a bit nervous about whether itās working as back is a bit stiff and achey again, but it sounds like there will be alternatives to try if not, fingers xd.
Keep well, and best wishes to you all, you are my inspitration to keep
fighting.
