Dear Claire, It does come as a shock and although I sound calm now it wasn’t easy. I worked in the Blood Transfusion Service and there is lots of heavy lifting in that too. My OH was a nurse too so he applied for early retirement when I got diagnosed with mets. If you need a bit of support we are all here for you as we know what a scary place it can be. keep in touch with us to let us know how you are doing.
Hi again Isobel. Do you know I haven’t a clue which of my vertebra are affected. I do knbow that my bone scans show numerous areas with “spots” and how some improve and others become worse. I am seeing my Oncologists understudy next week and when I last saw her I told her that I had never been able to see the actual MRI Scans although I had requested to many times. She has promised that she will go through them with me.
When I was diagnosed there was no web site like this to obtain information and I felt like I was the only person with bone mets. There was no Breast Care Nurse solely for mets patients. I understand all the treatments and medications but i would still like to know more about how “my” mets are. Does this make sense? I know I have mets on my spine, ribs thorax and worst in my pelvis but I do not know just how bad or good they are compared to my diagnosis. I know I have lived much longer than I expected to and for that I am grateful but i am the type of person who likes to know the truth and have always asked my Specialists to do so. Yet there are many things that go through my mind that I do not understand completely. I am no intellectual and with all my medication I find I cannot retain things so well. Something that only happened a couple of weeks ago seem to disappear until my Oh says something and I think what is he talking about. Then it comes back. I read a post I had put on over a month ago. I had written that the Oncologist had said that I may have to stay in hospital if my MRI showed up something. I cannot recall any of that at all. Does anyone have this problem? I know I am getting older and there is a lot going on with family, but in myself I feel as good as I have ever been mentally. Love to all. Sorry for the long rant!
Hi AlexD
Just read your thread about working with Cancer. I too have bone mets in my spine 2 I think. As well as various places. I was interested to read your company give you time for treatment and scans. I do get the time off for scans etc. I have to make the time up for any appointments including ONC etc. I will try and down load a copy of the Macmillan leaflets on company’s that have employees that are working with cancer. Scottishlass you mention in your thread you have a problem with your memory I am the same I blame the Femara hormone for that as it can be one of the side effects. I am always forgetting things before this I had a really good memory. Do you always see your main ONC I have never seen mine since last August. I only ever see one of team or the girl that is running the trial. Like you I would like to see the scans so they can go through them when I am present. I am always worrying if I get a pain anywhere it has spread whereas if I saw the Scans it would put my mind at rest. How often do you get scans? Let me know how you get on.
Hi Everyone
Thankyou all so much for your support and advice
Tried to put it to the back of my mind at the weekend
Went armed with a list of questions to see the onc this morning
The consensus is it is a bone met, after a long discuss going for rads annoying wed, started an anti oestrogen, carry on with zoladex ,ovaries out sept and bone strengtheners; she wants to hold chemo in reserve!
My OH who has been a tower of strength crumbled and I feel numb
Hoping your words of wisdom may be able to lift me
Thanks again Mandy
Hi everyone,
My memory is poor, I have to write everything down. I think its the drugs that do it. My OH says that after treatment I am stiff and tired for a few days but I am so used to it I no longer notice.
Val, I looked at me scans a few months ago, when I was first diagnosed I was not able to face looking. When I saw the liver scan and there was one small met my first thought was ‘Is that all it is, I’ll have to get that sorted’ When I saw the bone scan it was not as bad as I had imagined it in my minds eye. There is a bit of me that thinks my reaction is a bit odd.
Lindlyloo. I am contracted to work 150 hours a month. The reality is I do more. I organised having time off for scans and treatment through occupational health, they have advised the employer that this is reasonable. I am happy with this arrangement it means that I am able to say that I am not available to do certain things when I have hospital appts. Work are supportive of this arrangement and I don’t think people hold it against me It is my view that overall I am as productive as the next person in my organisation. (That sounds a bit big headed but sometimes you have to blow your own trumpet)
iamok, I am sorry to hear that it is definatly a bone met. It sounds like you only have the one. Lemongrove and Finty are in a similar situation to you. It it is my understanding that people who have limited distant mets can achieve long term survival, there are also people that have quite extensive mets had have been around for over a decade.
Alex D
hi ladies, my daughter went into hospital this morning for her hysterectomy (due to cervical cancer) her ops only between 2/3pm so gona be a long day for her, be glad when its done …
Iamok,
Sounds like you are on similar treatment to me, although I’ve never been advised to have ovaries removed - don’t seem to do that as much round here. It’s my treatment day today so zoladex this morning and zometa this aft. Next week is exactly 4 yrs since diagnosis and although my life is loads different, it’s fab.
Liz
Hello all
I have been reading all of your messages,all of which are helpful knowing that we are all going through similar things. There are some new women who will not have heard from me yet so welcome to all. I joined the forum about 6 months ago having being diagnosed with bone mets in Jan 2010, this being 10 years after my primary diagnosis.
One thing I wanted to mention is that I used to work in the NHS and was able to be retired on ill health grounds. The advice that I was given at the time was not to voluntarily leave but to go through with the long process of going off sick , Occ health etc. It is then the employers responsibility as to what to do. You are then entitled to stat sick pay etc. We all choose different options depending on what feels right for us.I am now on ESA and DLA and enjoying not working ! although to begin with I did miss the work role and socialability of work.
I have been on tablet chemo (Capecitabine) for 18 weeks and am adapting to living with manageable side effects. It seems that the end of week 2/beginning of rest week is the worst when my feet especially become sore and fingers tingling plus tiredness. I now pace myself and rest if I need to. My eyes are very sensitive to sun too.
Today I had a PET scan with results next Thurs. Will let you know how I get on. I am beginning to get used to the PET scans and now build in coffeee and grub apres the scan and a little shopping spree! Today I had a lovely swim too as I am training for the Brompton Bike challenge in Aug, raising good money for breast Cancer Care. I must work at keeping fitness up as it adds to my feeling of well being.
Always good to read your messages…
Esha Ness
Esha Ness, Reading about your bike riding, have you read Jane Tomlinson’s book called “You can’t take it with you”. Although I am not a bike rider myself you may be interested in this book. If you have already read it I would like to hear what you thought of it. Or anyone else on this thread who has read it.
I am propped up in bed feeling rather weary after an early start today. ( Bloods) So came to bed to read and fell asleep. Going back to my book shortly though. Love to all, Val
Lovely to hear from you Esha Ness! Glad to hear that you are carrying on with the shopping! Good luck with your PET scan results. Are you joining us in Bristol on the 18th July? Xx
Hi Ladies,
I have not been on for a while but feel the need from some support.
Finished 2 weeks of rads on my pelvis 3 weeks ago and feeling the side effects! pain a little worse than normal and bad tummy!Pretty tired as well. Also i think my zoladex injections are ‘kicking in’ and feel hot, weepy, moody and very vunerable My husband is finding it very difficult and upsetting. My macmillan nurse is going to sort some counciling out which i,m sure will help but can’t seem to get a grip on looking forward. Words of wisdom very very welcome. liz x
Hi Ladies
I have been reading back through all the various comments and I noticed quite a few are on a lot of pain relief tablets. Can I ask whether you get them prescribed by the ONC or by the GP. Any pain relief I take I normally have buy it from the chemist. Also I read you can apply for DLA whist you are working full time. At the moment I work 31 hours and I was wondering where I can apply for this. Does the DLA depend how much money you earn and what savings if any you have. I was at the ONC 2 weeks ago and I was informed I will not see anyone for 3 months. I have not had any rads to my spine even through I keep mentioning I have pain there. How bad does the pain have to be before you get any rads? I like to sign on each day to see how everyone is getting on. Bye for now.
Hi Lindyloo
I’ve had painkillers (paracetemol)prescribed by my GP - not problem when I asked because of pain of bone mets and have had repeat prescriptions.
You can apply for DLA when working and it’s not income related at all- you have to give evidence that you need care or have serious mobility issues to get it.
I was down for rads on my bones but somehow a boost of Zometa instead of Bondronat tablet has made the pain go away - my Onc was responding to my concerns about pain; that seemed to be his focus - if it was a real problem to me then he thought rads were important for palliative reasons. We’ve not put the rads on hold for my bones but still going to have some for spine as he’s worried about one lesion and me getting nerve compression even though the pain is not bad yet.
Hope this helps
Fran
Hi Lindiloo…Just a quick note…
There is no need for you to buy any medication. You can get an NHS medical exemption card and get your GP to prescribe anything you need.
As for DLA. I went to a Breast Cancer Care Day info and support day and the Citizens Advice Mcmillan advisor told us we are all entitled to DLA. It is not taxed and is independant of your savings/earnings. It is £125 a week.All of the women I was with on the BCC day are now getting DLA. I went to the breast care nurse at the Oncology centre and she made the recommendation for DLA and filled in the form. The Mcmillan CAB person helped me complete the form and she sent it off.
If you have ongoing consistent pain I would be asking to see the Consultant and would need to be reassured that I was being investigated fully.
I wish you well with sorting everything out. It does take time and lotsa form filling and phone calls !
Esha
Lindiloo, I take an assortment of different painkillers for different problems. It depends what your pain is like and how bad it is really and my GP and Oncologist both have an imput. I was referred to a doctor at my hospital who is a pain specialist and she looked at all the drugs I was on, and adjusted them which really helped. I do take quite a lot of painkillers. I have Gabapentin for nerve pain, Amitriptylene for Sciatica pain, Diclophenac for to help reduce inflamation and MST which is the one that I need most. Some of the pills are slow release and some I take just once a day. perhaps you should have a word with your Breast Care Nurse to discuss your symptoms and what you want help with. When my ribs were really painful I had a blast of rads which really helped although I did not notice immediately. It took a while to work for me.
I claim DLA too and it is a life line for me and made a huge different to getting about. My OH s doing all the cooking now as I have a problem with pain in my leg which I am hoping will be sorted soon. I need a walking stick again which is a nuisance for me. I have to go upstairs on my hands and knees and I won’t have a shower/bath unless my OH is around in case I get stuck! PM me is yuu need any other info. Take care. val
Liz it sounds like you are going through a rough patch - do press your mac nurse to sort this quickly for you 'cos it must be so miserable for you and OH. Maybe get her to chat to OH as well so he can talk to her about what is worrying him. It maybe that you need some help anti-depressants for a little while with feeling down. I know often we feel we don’t want to go down that road but there is nothing worse than letting it get a hold and feeling you just can’t cope. Hopefully the rads side effects will ease up soon. It can take a little while. You seem to have had quite a long course - were they doing more than one spot? Sometimes the pain does get worse before it starts to get better. I think when first dx with secondaries it is very hard. I know I thought I probably didnt have long to live - and at the very least would be in a wheelchair within weeks LOL. Here I am 9 years after that dx of extensive bone mets!!! I do struggle such a lot with pain just now but this because I have a soft tumour next to my spine - not from my bones at all - they seem to have stayed very stable.
I hope you start to feel a bit better soon and wish there was more we coudl do for you. Hope the mac nurse comes back to you soon.
Dawn
xx (and lots of hugs)
Hi - just a note for Liz and others re DLA - I went to the BCC Secondary course in Dec and Jan and we had input on benefits from one of chief DLA cancer advisors at the cancer centre in Sheffield - the advice was “don’t assume that because you have secondary BC you will get DLA but you will get the quick decision process for terminal 6 month people”(not that we need to be pessimistic…) - seems we have to fully document reasons for needing care support or mobiity support rather than assuming secondary BC means we should get this support; his advice was to document our worst days to in order to demonstrate need. I’ve still not applied as I’m still mobile but am needed OH’s help with caring for feet now that back is stiff with a met - that seems to qualify for needing care support at least.
Hope this helps as the advisor was trying to help us to make sure we did not get refused or have to appeal.
Hi
Was reading all your mails and just wanted to say hello. Not been feeling great lately, started back at work only 10 hours a week, but it has made me realise that I’m ill this may sound strange, but I feel the odd one out at work. Was always quite optimistic but feel that time is not on my side anymore… I know it sounds dramatic, but justhow I feel… Hope it’s only temporary and its just a phase.
On another note the Dla what a nightmare 20 weeks I hv waited, now got a really nice lady helping me from the Dla, but they hv really clamped down she said… But fingers crossed…
Lots of love
Txxxx
Ps Alex I’ll give u a call next week, could do with a chat hope ok…
Just a comment about claiming DLA. I’m wondering why peeps don’t claim under DS 1500 rules, as it’s a lot simpler (in that it’s the medical profession, rather than the applicant, who provide evidence about the extent of the applicants disability - and the DWP tend not to argue with medics).
I know the DS 1500 application is based on the idea that an applicant may die within six months, and I appreciate that some with secondaries might feel that doesn’t apply to them, and that their claim would therefore be turned down, or that to claim would be dishonest. But the reality of metastatic cancer is that things can suddenly take a turn for the worse, and when that happens, people do frequently die within six months - and the application only requires that someone is likely to die - not that they definitely will.
It has been mentioned in of the other threads but the DWP seem to be cracking down on awards made through the special rules.
There have been a few instances of people being turned down despite having been issued with a DS1500.
A few of us thought that these were perhaps isolated incidents but backed up by what the DWP person said, obviously not. terrifying !!
julie x
Hi
The doc or onc did not agree with me using special rules… I think due to the advancement of treatments herceptin, radiotherapy, targeted drugs etc, Metastic breast cancer is becoming more controllable and people are expected to live a lot longer(wish I could listen to myself, after the week I’ve had) The Dla are really clamping down with everything even if people are getting the forms signed. The other problem is the advisor told me some GPs will sign the forms for all sorts of illnesses which has made the Dla look at all signed forms…
I personally think that unless bc really does effect Ur life in a big way and I mean you struggle to wash walk remember to take your pills, can’t go to the toilet unaided ie basically can’t look after your basic needs the benefit is hard to get and will become harder in the future…
If you have a mental illness you are ok and let’s face it after trying to prove why you deserve the benefit your liable to have one !!!(lol)…
I’m fed up with thinking abt it and will let u know the outcome.
Thinking of you all and wishing good things…
Txxxx