Monday, 29 October 2012

The end of an era

I'm not sure what to write. I'm not even sure why I'm trying to write it, but I guess it's my blog so I can write it if I want to...!

It's silly really, but as of 6am this morning, unless I am told otherwise at my bone scan later on, I have given my son his last breast feed.

He's two years old, he isn't going to starve to death, but feeding him thus far has been extremely fulfilling, soothing and has deepened our bond. I wanted him to have the same chance to self-wean that his sister had, but it isn't going to happen. I'm fairly sure that he's going to be fairly cross, actually, for the next few days, but he will forgive me, and probably not even remember the fact that he was breast fed after a couple of weeks have passed. It doesn't stop me being sad about it though.

I can't help but mourn a bit too, for the choice of having more children taken away from me. Having a third was unlikely, but the lack of control, lack of choice, is painful. The bravado, telling people that I've finished with my ovaries, so they can go too, once I've finished chemo, is all a bit of a front, but I keep hoping that if I say these things often enough I will start to believe them. 

I know I am repeating myself, with the talk of ending breast feeding and so on, but I can't stop feeling sad about it, therefore I have to talk about it else I will go mad.

Hopefully, the CT scan I had last week and the bone scan I am going to have today will come back clear, and I can start to cheer up and get on with Chemo. The waiting is the worst bit, and the fear of the unknown. 

Of course tomorrow, I have the added excitement of having my hair cut v short and being dyed pink! 

Onwards, upwards, and pinkwards!

Friday, 26 October 2012

Oncology department.... apparently a scary place to be. If you've spent 2 weeks with your head in the sand like me, anyway.

So far I've had 3 trips to hospital this week.

Monday - Orthotics (for a new false boob fitting)
Tuesday - CT scan of chest and abdomen
Wednesday - Oncology

Monday was easy peasy, all running to time, got to go back in 2-3 weeks for another fitting if the size I need has arrived as nothing in stock.

Tuesday, was okay but a bit scary. Amazing machine and in some ways quite fascinating. Had to drink a litre of something vile tasting which helps the Doctors see what they need to see, got semi-disrobed and had a cannula put in so they could put the contrast/dye in for the actual scan. This had some really weird side affects - I am incredibly glad they told me about them before we started! 

For some season, the injection of the dye makes you feel like you have wet yourself - a really odd hot feeling, which rather unnerved me shall we say! (CLENCH). I also got a huge hot flush and funny metallic taste in my mouth which was slightly easier to deal with. None of these feelings lasted for more than 2mins, but wow. Weird. 

All ran to time though, despite it being an incredibly busy unit. Lovely staff as usual.

Wednesday, and time to meet my Oncologist. It's another big department, and although I was trying to be bright and breezy I didn't pull it off all the way through. For the first time, I've actually been confronted with the reality of Chemo and the potential side effects, not to mention (and I hope this doesn't sound as awful as it feels), the amount of people I saw that actually look ill. I don't feel like one of them, and I don't want to be one of them either. 

My oncologist make take a while to get used to - he isn't as naturally upbeat as my lovely surgeon. I had a sort of "pop quiz" when I first went in, asking me about what I had had done, checking that I knew what grades my cancer is, checking I understood about the seriousness of my lymph nodes being positive (3 of 16) ..... you get the drift. I know that it must be very useful for him to know what my level of understanding is, but the questions over whether I knew why I was being offered chemo, and whether I thought it was the right thing to do etc did throw me.

Anyway, we got along well enough. I didn't have to ask whether I could be fitted with a Port - he took one look at the veins on the back of my hand and asked whether I would object to having one fitted. Phew. I know that some people have to fight to get them put in, and spend ages trying to get veins more visible for cannula insertion, so this was a big relief. I won't lie - I don't like the idea of it being in me, but I can see how it might be a godsend once it is in there. 

The other "entertaining" bit of advice was that if my children or husband become poorly, I should keep my distance as much as possible..... erm okay. I can understand that if the children get something nasty and infectious (although they have already had chicken pox which is the only thing I can think of right now) that I should stay away, but common colds? I don't see how it is possible.

Oh yes, and the emergency card with the list of chemo related side affects that they recommend a telephone call to the department for. That's fun to read too. 

It's weird isn't it. I don't feel ill, but potentially I am ill, or at least, the medicine has the potential to make me ill. 

Suddenly it is all very serious. Again. I'm finding it harder to laugh it off.

I won't lie, I'm worried about getting the CT scan results, and about the bone scan that I have booked for Monday night. They are just routine appointments, for staging the disease, but I'm just keeping my fingers and toes tightly crossed that they don't find anything else.

I don't know if I caught my lump early. I have no idea how long it had been there. It's a bit embarrassing really - how could I not have noticed sooner? What damage have I let happen in the meantime, how far has it spread via my lymphatic system?

I went on the Younger Women's Group facebook page tonight, which is a group set up by local ladies under 50yrs of age with Breast Cancer. In the short section I looked at on facebook, there were no less than 3 deaths reported - all under 45, in the few months. The most recent was a lady of 27yrs, whose cancer had spread to her chest wall, arm, and lining of her lung. Shit. She was 7 yrs younger than me. Poor girl.

I'm sad to say I never met the lady in question, Rachel, but it sounds like she was amazing - she raised a lot of money for various cancer charities in Norfolk and carried the Olympic torch this summer too.

Cancer is such a vile, sneaking, cheating disease. It isn't honest. There's nothing tangible that you can fight against. The only real option is the surgery, the medicines, and the radiotherapy, and I don't want them. Not really. But then I don't intend to bloody die yet either. 

Argh. Melodramatic much. 

Dark thoughts for a Friday night.  For any night.

I just need to keep focused on starting Chemo, and on starting stage two of the battle, and keeping a positive mental attitude.

Wednesday, 24 October 2012

It looks like the pinkness is catching!

I've had another 3 volunteers for dyeing their hair wholly or partly pink. Amazing! And, the current fund raising total is just fabulous as well. 

I'm utterly staggered by how generous people are being. I did of course have high hopes that we would reach my fund raising target of £750, but to nearly be there in under 3 days is amazing. Thank you everyone so much for your generosity and support. It really does mean so so much to me, and of course, the brave souls who are joining me in going pink.

Rebecca x

Monday, 22 October 2012

Pink Ladies

Well, it's all booked! 

Next Tuesday 30th October for a short hair cut and lots of pink dye!

Many many photos to follow, but for now, a link to our fundraising page for sharing and donations, wherever possible. Pretty please!


Sunday, 21 October 2012

A birthday, and the arrival of the Quilt of Love

Wow, the time goes fast!

My little boy was two today and I can safely say that he is more gorgeous than ever. Despite being full of cold, and on the vommy side due to having the most ridiculously sensitive gag reflex in the world. Ever.

We have had a lovely day, despite a few tantrums - but if you can't have a tantrum on your birthday, when can you?! 

I feel very blessed, to have such lovely children. I saw a glimmer of the future today, as they sat side by side on the sofa playing with a sticker book and chattering to each other. 

I hope it isn't too trite, but it has given me a reminder (as if I needed one) that I have so so so much to fight for, to ensure that I kick the fucking cancer out of my body for good.

Another wonderful thing happened this weekend. Well, Friday.

An unexpected parcel arrived, and within it was the most beautiful quilt, made, with love, by the most amazing people. I am so honoured to have received it, and the time and effort that has gone into it is incredible.

You know who you are, and I thank you from the bottom of my heart.


Wednesday, 17 October 2012

Feeling the fear again

I'm having a tough week. And it is only Wednesday.

Despite a fab weekend celebrating the children's birthdays, and bouncing a fair bit on a bouncy castle, my birthday on Tuesday rather reinforced some of the crap that I'm dealing with at the moment. 

Interspersed with the birthday cards were hospital appointment letters for a CT Scan, Bone Scan, Oncology appointment, confirmation of a follow up for 9th October 2013 with Mr Pain, and letter from Mr Pain to my GP, confirming what I've had done, what I am to have done, and also that as they are not 100% sure of the diagnosis on my left breast, that I'm to have an MRI within 6mths to see whether the fibroadenoma (benign tumour) could in fact be something more. I'm already worried about my remaining breast anyway, as it feels totally different to how it did pre-biopsy, and I don't know whether I am imagining things or whether I ought to get it checked out sooner, but then perhaps the CT Scan of my chest might show something if there is anything to worry about? Perhaps the chemo will kill anything off if it is there anyway, and it only has to stay for a year until I have reconstruction as it is definitely coming off then....and I'm certainly going to have my ovaries removed as well.

And breathe.

I was also watching some of the Stand Up to Cancer stuff on Channel 4 (specifically the Big Sing) and whilst a lot of me was really moved and inspired by the past and present cancer fighters singing at the Royal Albert Hall, part of me couldn't help but feel terrified at the bald heads, the visible PICC Line

It is starting to sink in that soon, this is going to be me.

What has happened to my life? 

In an effort to be positive, I am taking part in a makeover tomorrow night for Keeping Abreast as the Younger Woman's BC group will be there and myself and another post mastectomy lady are being made over to show that you can still be glamorous despite the fucking cancer. Oh yes, and it should also be fun! Trying on lots of lovely clothes should be fun in any case, as should having my hair done - enjoying it whilst it lasts so to speak.

I'm not having second thoughts about getting my hair cut for charity, but I am sad that it's not going to be there for a while, even though I know it will grow back eventually. It's the one part of me that I really quite like. Dammit.

I also popped to see the hairdresser for tomorrow night's makeover, as they have offered to cut my hair for me, free of charge, and dye it as well. I'll be going to the very fabulous Gallery Haircutters and the very lovely proprietor is confident that he can make short hair look good on me, and has lots of great ideas about how to introduce the pink. I like a confident man.

They were very kind at the hairdressers, and have gone to great lengths to remind me that my hair might not fall out.

I'm certain though, that even if it doesn't fall out, that I'll be happy with my decision, even if I am quaking in my slippers about it now.

After all, it's only hair and will grow back. Right?


Monday, 15 October 2012

The cunning plan!

Right, as you know, I want to do something positive to raise awareness of Breast Cancer and raise some money for charity.

Well, here is the wonderfully cunning plan, suggested by my lovely friend.

Not only am I going to take the plunge and get my hair cut short, I'm also going to dye it pink, as is my friend, and several other wonderful friends and family are going to dye the ends of their hair pink, dye a stripe pink, get their nails done in bright pink, wear get the gist.

So, final details to follow shortly - it will most probably take place on 30th October, and there will most definitely be lots of reminders about how to sponsor us, and pleas for mentions on facebook and twitter.

So, wish me luck - I'm going to need it, and thank you so much to the person who suggested such a crazy plan. I don't think you really know how much it means to have your support and to be honest, I am not sure I can adequately vocalise my gratitude. All I can say is "thank you" from the bottom of my heart.

Thursday, 11 October 2012


Finally, some good news!

Out of the 13 nodes I had removed, only 1 has tested positive for tumour cells. Thank eff for that. Talk about relieved.

So, my treatment plan as I had expected and "hoped for":
  • Chemotherapy every 3 weeks for 6 - 8 cycles
  • Radiotherapy every day for 3 weeks, post chemo
  • Herceptin every 3 - 4 weeks for a year
  • Tamoxifen pills for 5 years
I've got lost of other tests and scans to have in the next two weeks or so - a "staging scan", as well as pre-chemo blood tests, so it sounds like I am going to be rather busy.

I am waiting for my oncologist appointment to come through - the appointment itself should be in the next 10 days, so after that I'll find out what drugs I am going to be on.

Once I get 6mths or so pas the RT I can start to think about reconstruction, and most importantly, having the other breast removed. I have also asked whether they will remove my ovaries - apparently, the outcome for women whose periods don't return post chemo is better for those whose periods do return, and on that basis Mr Pain thinks that it might be a sensible option for me. Frankly, I'll be glad to see the back of them!

Other than that, all pretty straightforward stuff. I asked about a genetic test and he said that unless we can discover any other family history that indicates otherwise he doesn't think that genetic testing is necessary - my test results also don't indicate that this is something hereditary, so I have just been unlucky. I think that my father is going to delve a little deeper into the family tree and medical history, so we'll see what comes of it.

It's so nice to be abled to have good news for a change! All we need now is for the children to start sleeping properly, and we'll be set...

Tuesday, 9 October 2012


One whole day at work (at a machinery auction, so fresh air ALL day) and I am shattered! Pathetic, but least I have actually been at work today. I cannot complain at the weather - it has been a stunningly sunny day and only a bit cold, so quite pleasant to stand around in and chat to people. 

My role was mainly PR, networking, troubleshooting, and camera-woman today, which was actually quite nice. I had the chance to chat to lots of clients that I have known for over 7 years, and have a good old catch up with lots of my husband's peers. I've also been called "remarkable" by one of the Directors of the firm I work for, which is rather nice. Apparently they are all very surprised at me being up and about and so active after my ops. It probably helped that I was standing on top of a piece of farm machinery at the time - well, I'm only 5'4 so I need all the help I can get when taking photos of tractors and crowds of people!

I'm feeling a bit off colour though, rather annoyingly, as I had my flu jab yesterday, which has coincided with the children coming out in a stinking cold - bleurgh . I shall get my own back though, as my husband and both children are going to have the jab next week too - if I can avoid them bringing any more germs home than absolutely necessary, and of course try and protect them against the nasty flu bugs that have been around in recent years, so much the better.

Not looking forward to tomorrow, obviously, but perhaps I will be surprised and get some reasonable news for a change. If nothing else, it will be interesting to see how many lymph nodes Mr Pain took out - from what I understand, everyone has a different number of nodes so it will be interesting to see how many I had. Not that it matters but one can't help but be curious.

In an attempt to curry favour, I've also made a batch of fudge for my lovely consultant, seeing as he was so keen on the box that I was given when I last saw him in hospital. 

I'm rather chuffed actually - the last two attempts I have had at making fudge were awful, but last night's "quick fudge" recipe worked a treat. It's very chocolaty, but I don't think that is necessarily a bad thing.

For anyone that wants it, the recipe is as follows:

397g Can of condensed milk
450g Plain chocolate
2 tsps Vanilla extract
Chopped walnuts/almonds/similar if desired

Basically, heat the chocolate and condensed milk in the microwave until the chocolate has melted (2-3 mins), add the remainder of the ingredients and beat until smooth.

Pour into a 20 x 20cm  square cake tin, lined with tin foil and allow to cool in the fridge for 2 hours.

Judging by the comments from the children this morning (who were allowed to try some tiny slivers), the recipe is a good one. I can feel a home made Christmas coming on!

I've had to tell a few more people today, which was a bit upsetting. It must be so hard for people to know how to react as well - I hate doing it.

I always try to be upbeat, but it does get me down. I'm so bloody tempted just to do a facebook post or put a notice in the paper to get it out in one go. 

My lovely Dr friend has come up with a fab fund raising idea which, if it goes well could end up with some publicity in order to raise money for charity - that might get the word out, and in a very positive way as well.

More info to follow when we know if/when it is going ahead. Pun intended!

Basically, I'm waiting to hear tomorrow what Chemo drugs I'll get as this will influence whether or not my hair falls out. I'm still tempted to do something wild, even if it doesn't, as a way to stick two fingers up at Cancer.

So, a further update will come forth tomorrow no doubt. Would it be wrong to ask for Chemo that doesn't make me put on tons of weight? Losing my hair I can deal with. Getting fat as well would really add insult to injury.

Vain? Moi?



Sunday, 7 October 2012

It's like being back at school...

There's so much to learn! At least, it feels like it today.

The next and possibly last batch of results from the Axilla Node Clearance (ANC) come back on Wednesday, and my appointment is confirmed as being 10.10 am.

I have been merrily wandering around this week thinking that my results won't make much difference. After all, the cancer diagnosis isn't going to disappear so what will change? Having done rather a lot of reading, I'm feeling slightly more scared. At the moment, we know that 2 out of the 3 Sentinel nodes taken tested positive, which indicates a possible spread. Assuming that no more test positive, I'll be dancing. If I do have any more nodes that are positive, it will make things more serious.

In preparation for my meeting, I've been reading the NICE guidelines and latest quality statement on breast cancer treatment. A conversation with my breast care nurse spooked me earlier this week - I'm sure she mentioned something about a waiting list for chemo. I can't wait. I don't want to wait. I want to start the drugs, to get better, to start being able to plan my life again.

I want......doesn't get.

It's not worth crying over but I hate the build up to these bloody appointments.

Thursday, 4 October 2012

I didn't see that coming...

I seem to be saying that a lot recently!

Tonight, after supper I thought that I would broach the subject of "mummy getting her hair cut for charity" with the biggest child.

This did NOT go down well.

Apparently I am not allowed to get my hair cut short, otherwise I won't be mummy any more. 


Looks like I am going to have to do a LOT of ground work with this one. Maybe choosing my new hairstyle will help?

I haven't read the children "Mummy's Lump" yet, because, well, it's too fucking depressing, but it seems that it might be time.

Shit shit shit.

Sorry for the swearing.

Oh, and we had an impromptu visit from our Vicar today, which was lovely, but somewhat of a shock. It still made me feel a bit like I'm going to die though, which I'm bloody well not, but it reminded me that whilst breast cancer is quite "curable", ish, (85% chance of cure is good, I know), it's still pretty serious. Something I had been trying to forget about.



Tuesday, 2 October 2012

Post op angst

I feel physicaly fine, so really I have nothing to complain about. No pain, very little swelling, a few bruises, but I was expecting them. 

I'm quite surprised really, bearing in mind how much pain I had after the lymph node biopsies - it is a huge relief. Not that I am allowed to do anything. Feeling better doesn't allow me to lift or move my arm above 90 degrees in cease I damage myself without realising it.

I must stop complaining and count my blessings!

The children are coping really well, and our weekend and my daughters birthday also went well. 

My poor husbands back is terribly sore which is making life for him rather difficult but on the whole, we are coping. I rang my office this morning and they are all fine but stressed and finding deadlines hard to meet. I think they will be okay though, I can't get stressed about it, as I have been "banned" from going in....I will have to have words with my boss. I know it is just because he cares, but it is rather frustrating.

I am feeling anxious again about not having anything to do, but I have been helping my husband with some farm related paperwork which is keeping me slightly occupied. I have also been doing a lot of walking, certainly about five miles each day, and I am feeling the benefits of that.

Slight weirdness this afternoon though. I had noticed after I got in from my walk this morning that my month old mastectomy scar had started to leak from a tiny point in the middle. It looks like a bit of scab (sorry for all the details) has softened and gone whitey yellow which is allowing liquid to seep through, which is pinky yellow. I am also feeling a little rough with a headache so popped up to the doctors and ended up with an antibiotic just to make sure there is no infection.

I am probably being over cautious, but having rung Macmillan, as I couldn't get hold of my breast care nurse, they said to get any change checked out, so I did.

I feel like a bit of a fraud though. Normally, I consider myself to be quite robust, but I don't trust my body at the moment. I is like I have lost a bit of faith in myself and am trying to second guess every little thing.

I am determined not to become a worry wart or hypochondriac, but there is a lot to learn about managing my health again. Well, at least it feels like it. 

I don't want my life to be revolve around trips to the doctors. 


A bit late for that, isn't it!

On the plus side, I did have a lovely catch up with someone I haven't seen for a while, which was great. She also had great things to say about my consultant as her husband is also a doctor. Apparently, all surgeons are bastards, except for Mr Pain. He is the exception, which is good to know. 

Tomorrow, theoretically, I am going to go to a fashion show hosted by Keeping Abreast, which looks like it will be excellent fun. Fun is needed at the moment. Nearly as much as sleep!

For the rest of tonight, I shall be calling people I haven't spoken to in a while to tell them what is happening.  I have alluded in former posts, things are going to become more public than I would necessarily choose to make them, so I need to tell certain people before the smoke signals get too far.

If nothing else, I want to sort out my just giving page and start raising money for my charity haircut, and the longer I have to do that the better.