Relatively new to this - but totally confused by diagnosis ??
Had BC in 2000, followed by chemo, radiotherapy and 5 yrs of Tamoxifen - I was 34.
Had first baby 4 weeks ago - had suffered from ‘pulled muscle’ in rib and sciatica - or so I thought!! Was then diagnosed with secondary breast cancer - patch in my rib but more in my pelvis/spine.
Have just had 5 blasts of radiotherapy and arrangements have been made for first dose of bisophonates (?) next Tuesday - along with a discussion with onc consultant regarding treatment.
I am not sure whether to be positive about treatment or what. I would like to think that I have a few years left in me yet - I am 41 (approaching 42). I am about to apply for DLA and it scares the living daylights out of me to ask for DS1500. What will it tell me? Social Services seem to be rushing things through for me - although I can get about ok at the moment - my husband is very supportive. The contract that I signed for is 12 months loan - I don’t know whether this is normal or whether I am reading more in to it than I should.
I have been very matter-of-fact about this recent news although absolutely devastated being told just 2 days after the birth of my baby.
I feel like my head is all over the place. HELP???
Hi Sixpen, I’ve been in receipt of DLA…(and the DS1500) since 2004. My hospital Mac nurse helped with my forms as I was an in patient at the time. Each Spring I’m awarded the DLA, DS1500 again. Hope this helps, many of us are under DS1500 for years and years. Belinda.x.x.x
Ooops another thing Sixpen…I meant to add I felt very groggy for 24 hours after my first ever bisphosphonate infusion but all infusions after this were totally symptom free. Only adding this as I’ve since learnt it’s quite common to feel grotty after the initial infusion. I changed to bisphosphonate tablets a while ago as my veins were getting stubborn and the tablets are okay too.
Belinda.x.x.x
Thank you for your support - I wont expect to do too much next Wednesday now. Did you feel sick or anything like that? I really dont know what to expect. 2-3 hours hooked up to drip? Is it a normal cannula (sp?) or a butterfly-type?
Husband is very supportive but also giving me ‘grief’ for me wanting to sort things out - my attitude is that it could be 2 weeks, 2 months or 2 years - whenever, there are certain things that need sorting and I cant blank them out. eg Child benefit, I’ve had this paid into husbands name, though in joint account - I dont see the point in creating work, so I’ve cut out the middle man (ie me!)
It is hard to get your head around things when you can still do everyday chores (even after c-section) - hard to believe that there is a little PacMan chomping away inside you, that has lay dormant for some time.
Thank you for taking the time to reply - and if there is anything else that you can think of regarding the treatment, then please let me know (good or bad)
Hi Anne, I can really relate to you wanting to sort things out. Just after my diagnosis I sorted out some of the practical jobs. I’m glad I tackled things at that time, now I can forget about them, they are all sorted.
I had Pamidronate infusions which took 90 mins to infuse. I think Zometa infusions are much quicker, approx 20 mins. I had a cannula.
I was fine until I woke the next morning, then had dizziness, chills, flu like symptoms but I felt much better by early afternoon and this only happened once, after this all infusions were completely trouble free.
It took me months to get my head round my diagnosis and my daughter was grown up. I can only imagine how hard it must be to be dealing with your diagnosis, recovering from a c-section and looking after the baby. Hope you are able to get some rest.
Belinda.x.x.x
Sorry you’ve had bad news when you should be enjoying your baby.
Like you, I went into frantic activity straight after my secondaries diagnosis, because I needed to do something? I became an expert on Social Security matters and cancer treatments very quickly. I found myself feeling very resentful towards anyone trying to treat me like an idiot or attempting to do too much thinking for me. Heh, I have cancer not brain damage!
If a doctor is kind enough to sign a DS1500 for you, be grateful, because it will make things so much easier for you. Do not assume it is confirmation that you will be dead within 6 months.
I filled out all the paperwork by myself (others seem to have helpful Mac nurses but mine was useless) so if you need help applying for Incapacity benefit, DLA, Blue Badge, Car Tax exemption etc. I’ve done it all.
I have been given zoladronic acid - told them that I loved them cos it meant that I dont have to spend too long at the hosp. Just hope that it works well for me.
I felt fine afterwards - most of my bones ached on wednesday evening but were fine when I got up yesterday - but got into bed last night and had to get up again - upset stomach (both ways) - fine again this morning.
Have to have a calcium tablet every day - quite nice really - taste like the sweet cigarettes that we used to have as kids (and they still do them!)
My head is still extremely mixed up - I wanted to ask the consultant how far gone it was - but my bottle went.
Firstly, I’d said to the male nurse doing the admin that if he left my folder open on any interesting page, then I’d be happy to see it that way - he laughed at me but later whilst doing my infusion, he did go through my notes and said that nothing particularly stood out.
The consultant was quite difficult to understand (and he wrote as fast as he spoke!) - he wasnt the original one who wanted to discuss further treatment with me - so, I’ll have to wait until the next time.
Once again, thank you for asking - how are you doing?
Hi Anne, oh I’m glad you got the quickie infusion and hopefully you’ll not have the upset stomach next time. I have those calcium tablets too…and yes they do taste just like those sweets!
I haven’t ever read my notes although on my folder I saw a sticker (this was in the early days) that said ‘‘probable bone mets’’ but was told the probable no longer applied. I used to read the screen notes, in my hospital you’re sitting at the side of the table so it’s easy to read. But after a few months I stopped reading as I found I just couldn’t relate to the very ill woman on screen. I know for some of us the more information we can get the better but I’ve found getting information in small to medium sized doses works best for me.
Hope you see the original consultant next time, I’ve felt very reassured (and lucky) I’ve been able to see the same small team over the years, I feel they really know me.
I’m very well…thanks. Take Care Anne. Belinda.x.x.x