Hi Katie just on the point you made about Life Insurance.
That’s exactly what my husband & I thought. We dug out the insurance papers & rang the company…. devastatingly we were told that they won’t release the money until I have 12 months or less to live!!
So basically it’ll only be when I’ve become too ill to enjoy the money we’ve paid into for years for such a situation that we now find ourselves in.
The irony is, we’re totally broke & can’t even afford to do a full food shop each week.
A holiday of any kind at the moment & for the foreseeable is just a pipe dream unfortunately.
I totally disagree with insurance companies having this rule & the government really needs to look into this
Hi Lou222, i also used to smoke unfortunately but you know what my Macmillan Nurse told me on a couple of occasions…. smoking does not cause breast cancer!!
The relief i felt upon hearing this was emense as i don’t think that i could have dealt with the guilt having wrongly thought that i had caused it XX
Hey @loki it’s disgusting really isn’t it!! Have you spoke to Macmillan about what else you could be entitled to?
We weren’t entitled to Universal cred or new style ESA but I was entitled to PIP which might be worth looking into? It’s awful with everything we’re going through that money should be on our minds too!
Do you have anything you could sell on vinted maybe?
Hi @loki yes I didnt realise how much guilt and responsibility I was holding onto until Jaygo wrote those words. This is not your fault. This is why this forum is so powerful, people who’ve been there and see what you’re feeling before you do, I’m very grateful. I’ve just been to see my doctor and got the receptor results. My cancer is ER positive 8/8 and PR positive 8/8 and HER2 negative, still getting my head round what it all means. The plan they’ve put in place is to start with Chemo to shrink it so that the surgery will be (Hopefully, if it responds) less extensive as Its a 5cm tumour. Then surgery after the chemo. I feel a bit all over the place really, I’m more scared of chemo than surgery, I’ve had operations before so know what to expect from that but Chemo is scary and unknown. I wanted a bit more time to come to terms with it all before losing my hair too, it makes it SO visible and I haven’t told anyone other than my close friends and family. Ah well, guess I have to suck it up. Good news was that my CT showed no signs of cancer elsewhere, which by the time I got the results I had convinced myself I had it everywhere, so that was a relief and the first bit of good news so far. Sending lots of love to everyone here wading through it xxxx
@lou222 just cling on to those positives, and if you don’t cold cap, it might feel odd at first being hairfree, but it can have its benefits. People don’t mess with me! At first I hated it, but now I kind of like it. If you’re thinking of a wig, hang fire before you spend a load of money. I bought two and haven’t worn either. I prefer my punky biker hat.
Chemo is scary and unknown, but it is not all bad days. I’ve just had a lovely lunch with a mate who is also HER2 and going through her chemo but she is full of beans and looks great. There are some days where you do feel fine. We’re all here for you. There are some monthly chemo starter groups on here, so you can find others starting at the same time as you. xx
Thanks @Jaygo I think I’m not going to cold cap, I’ve got to just get my head round it first (pardon the pun!) and feel all the feels as my hair is right down my back and I will miss it, but i will get used to it and think it will be more practical to get it all off especially as I’m having chemo first before surgery so at least I won’t have to try and dry it after the surgery when I’ll be sore. I crochet and knit and have a multitude of hats and scarves and will probably just whip them all off when I get home. (i do like the sound of a punky biker hat though!!) Its just the speed of it all is taking my breath away, I’m glad things are moving forward now with a plan but Jeez its a lot to take in, I just want to hide and be angry! Thanks for your support, I’m very grateful, glad to hear that your friend is feeling good, I hope you’re doing ok too. Lots of love to everyone xx
Hi Katie 91, thankyou for replying. I hope you’re feeling well.
It really is awful isn’t it having financial worries on top of everything else going on. I’ll arrange to speak with Macmillan, see if they can point me in the right direction
That’s a great idea about selling things we no longer need X
Hi Lou222 that’s great news the cancer hasn’t spread thank goodness for that! I bet that was such a huge relief for you
I am also HER2 -, Estrogen+ & PR+. I agree with you, all the medical terminology really is difficult to get your head around.
I’d often find I’d walk out from just having had an appointment & I’d forgotten most of what the Dr had told me. That’s where your Macmillan Nurse will come in very handy though. You’ll be able to discuss everything & anything with your nurse. I’m so lucky to have a wonderful Macmillan Nurse & really appreciate how they are with us for the whole of the cancer journey.
Hi Irishredhead, from one redhead to another haha. I’m not totally Irish though & live in Liverpool. Doesn’t everybody born in Liverpool have some Irish blood in them!
I was diagnosed last year, February, with Lobular Breast Cancer & then after CTs, MRIs, bloods & a bone biopsy was told in May that it was stage 4 Metastatic Breast Cancer. Sadly it’s in my right breast, lymph nodes under my right arm, collar bone, top & bottom of my spine, top of my right femur & left & right sides of my pelvis.
I was first put on Letrozole & then onto Ribociclib once it was confirmed from the bone biopsy that it had sadly spread. I’ve also for the last 3 months had a Denosumab Injection each month when I go to Clatterbridge to collect my medication the day after having my bloods taken.
Have you been given Ribociclib for the bone cancer in your spine? How are you finding managing on it? I hope you can tolerate it well if you are on it some people do thankfully
@lou222 you will find your own style. Here is my punky biker hat look, but this was Christmas Day, it was a little on the warm side today, so I might need to find a new hat for the next few weeks. I also have a punky hat with skulls on which I like very much.
How lovely to put a face to the name! You are gorgeous and that is a bad ass hat, as you say i’m sure i will accept once its done, it just all feels so bloody sudden, a month ago everything was normal and now its like being tumbled in a washing machine! I shall embrace the epic head wear and hopefully rock it like you xx
Only saw this so sorry for my late reply! You are pretty much in the same boat as me. I have the mets all the way down my spine and in my shoulder, as well as the lymph nodes on the left, and in the beginning it was also found in the fluid in my stomach, though this has now cleared and the oncologist said no cancer was visible there any more. I am getting infusions of Zometa for the spine, am due my 2nd one in about a month. Will probably have my next CT scan beginning of May. Am almost 6 months on Letrozol, so far so good. Most common side effect is headaches, have some neuropathy in hands and fingers but tolerable. Am still working 40 hours per week and I want to continue doing so.
Yes, Liverpool is the 2nd home of the Irish! I’m entirely Irish, grew up in Dublin but living in the Netherlands for the past 32 years.
thank goodness for that! I bet that was such a huge relief for you 
That’s where your Macmillan Nurse will come in very handy though. You’ll be able to discuss everything & anything with your nurse. I’m so lucky to have a wonderful Macmillan Nurse & really appreciate how they are with us for the whole of the cancer journey.
