Macmillan as my first port of call

Hello lumpylady,

I am full of admiration for you. You have managed to do such a lot already. I haven't used the phone help line so far. I didn't know there was so much help from it. My husband and are self employed, I'm not sure if we can get any help financially, I will need to look into it. We have closed down the business until end of January, it is our quite time of the year thank goodness, but still not a great thing to do. If this diagnosis had come a few months ago I'm really not sure how we would've coped, we are just the two of us in the business we don't employ anybody.

I was diagnosed on 4th Nov, grade 3 invasive breast cancer. Mastectomy on 22nd Nov, radiation and chemo to follow, maybe more. Since diagnosis I haven't had day to myself, maybe that's a good thing, we had visitors on the day and now we are visiting. This week is pretty much filled with scans and travel. I live in Wales and am 4 and 1/2 hours drive from family and 1 hour 20 mins drive from the hospital so it's tough, but I'm tough, or I thought I was. I don't have a huge network of friends, husband and I were too busy working building up our little business. Ironically we have just finished all the hard bit and we're just starting to take it easier.

I joined Macmillan, I wasn't going to, it seemed as if it would all be real if I joined,, I think I was in denial. Plus I am rubbish with technology, not used to online discussions and the like. It's never appealed to me before. But without doubt it was the best thing I have done so far, I still can't believe how comforting is is just to know there are people out there to give advice, just a friendly comment can cheer me up instantly. I am so incredibly grateful to Macmillan for providing this service.

I'd better go everybody's getting up, just wanted to say hello to you and wish you all the best.

i

Hi JMC04

I'm so pleased you got in touch! Thanks so much for your kindness and I really feel for your situation. I know exactly what you mean about being nervous about joining online support open to the world to see, but I decided I needed to be able to have as much information available to me as possible from experienced users and people who were finding their feet just like you and me. By the way, you're doing such a great job of dealing with everything and getting used to your rather rapid changes!

I really would recommend asking Macmillan about your financial options going forward. It is surprising what is out there to help you, like what to say to creditors, how to arrange to draw on private pensions early and talking to banks and suppliers. It certainly took a lot of weight off my mind.

I'm hugely lucky because I have taken the time to settle down and focus on all this from the b of bang. I'm also deeply in denial ha haa!! But I'm trying to do the planning so I can be as badly incapacitated and terminal as my worst fears can dream up, and still have the logistics, care and financial side ticking over in the background.

If you're struggling to get time to yourself, you know you can explain to people you're with that you want to prepare and be ready as much as you can before the op, and explain you just need to be left alone for a morning or an afternoon during working hours to chat to helplines in private and do some internet research in peace and quiet, to have some clear thinking time for yourself. I'm sure they'll understand and may even offer to help!

I found the info I've discovered so far has made a tremendous difference to me already because it reassures all the people around me that I have some idea what is going on; it's taking the pressure off people wondering if they need to panic on my behalf. They can see they don't have to, yet (!) and so we're all much, much happier.

I'll update my blog with anything I discover with random rural logistical support but in the meantime, take care, and you're doing great!

Hi Lumpylady,

I only just saw your reply, I think after the operation I will contact Macmillan, I saw some booklets today at the hospital after the ct scan, my husband was standing next to them and asked if I wanted any, they all looked applicable, but as we had to park about a mile from the hospital and it was pouring down, I only took two.

You made me laugh when you said you were deeply in denial, I still feel like this isn't real, like I'm watching from outside.

You're right about time to yourself, we had something planned for just about every day up to the op, but my daughter having a cold has put paid to that so we can't visit, don't want a cold before the op, so we have a few days to get sorted, I'm thinking that its probably for the best as I feel like I'm running out of steam all of a sudden. Although if things were different I'd be there in a heartbeat.

I just cant research yet as I think it will scare me, I don't like statistics either as I've always been the odd one out, but curiosity will probably win in the end.

Going to try to get some sleep now my husband has asked me to try to take a sleeping tablet before midnight, as he thinks I might sleep a bit longer. Got the bone scan tomorrow so its another long drive there and back.

Bye for now and thanks for the chat and info. Much appreciated.

Hello @jmc04 !

I'm so sorry I've been away from the blog for a few days whilst I try to sort things out. Hope your bone scan came back okay and your op is on track?  I can really recommend phoning the nurses on the Macmillan Helpline for a chat, 0808 808 0000, 9am to 8pm, Monday to Friday.  Just ask them anything, anything at all.  They can explain and reassure you about a huge amount, and take the scary out of the whole situation.  Your specialist nurse can also help answer all your questions.  And your GP.  I've been using all three in a sequence every time I get the next bit of information, so I can piece together what to expect, when to expect it and how to cope and whom to get to help me cope on the ground.  Really, the Macmillan Helpline is a godsend of epic proportions :)

Best of luck and fingers crossed for the op and a speedy recovery from it :)