Monday, March 29, 2010

Cupcakes and chemo

A post (which I may or may not update as the week goes on, we shall see!), to let you know that I am fine after my last chemo on Friday.

I had herceptin at the same time as the chemo - well, just before it - half an hour to infuse the herceptin, half an hour observation (the last time they have to do that, apparently), then an hour to give the taxotere chemo. Then I was done!!! No problems getting a vein, and the cup cakes I bought the nurses seemed to go down well!!

On Friday, we went out for a meal with Luke and his girlfriend (just a quiet night out for pizza, none of us were drinking), and then on Saturday we were up with the larks to meet Greg's uncle in a cafe in Tiverton for breakfast. We got there for 8.15am, and had a lovely cooked brekkie when they finally opened at 8.30am!!

After that, straight on down to Exeter to see G's dad (Pete) - it was his 74th birthday and he is still motoring on pretty darn well!! G had bought him a telescope, which he had always wanted, so he was quite chuffed with that. After present opening, Pete had to go to his allotment as his mates wanted to celebrate his birthday with him, so I got them to drop me off in town so I could peruse the local wig shop. I'm looking for something shorter, with a fringe, to help me through re-growth... I tried a few on, but they all make me look at least 50 years old, so I decided against and bought two new lighter hats instead.

Later in the evening, we went out for a chinese meal where G's mum joined us, and then on Sunday we pootled home and stopped off at H&P's house to celebrate Jamie's 3rd birthday. It was lovely to be able to catch up with so many people!

I've felt pretty much fine throughout - a little indigestion on Saturday, and this morning (Monday) I feel a little slow and woozy, but I am not planning on doing anything much, except potter, so it should all be good.

Will update if anything happens, and will definitely post again once I've had my radiotherapy planning sesh!

Tuesday, March 23, 2010

Final chemo clinic - done

Today was the last pre-chemo clinic and blood test I will have to do. I am so relieved, and keep crying as a result!

My bloods were super-high (9 point something, which is due to the neulasta) and Dr Iqbal said I had done really well. I've got through all 8 treatments without any delays, and only one 'scare' and I have carried on going to work throughout. I think that is pretty good. So far, I will have clocked up only about 6 days off due to feeling unwell post-chemo. I know it isn't a competition, but I am still pleased my body helped me through so well.

I now know that my radiotherapy planning will be done on 1st April and I will start taking Tamoxifen on that day too.

The radiotherapy planning is where you are measured up and tattooed prior to the actually radiotherapy starting. I forgot to ask when it would actually start (doh!) but I can ask that next week. The tattoos, as far as I am aware, are like a freckle, so they are noticeable but hopefully not obtrusive. This ensures that they zap you in the exact right place everytime and it is much quicker in and out for each appointment. The treatments were confirmed as being just 15 (every week day for 3 weeks), so that is great. I've been reading about people going through this, and many seem to feel tired towards the end or just afterwards, and/or get a slight 'sunburn' to the area being treated. Many come through it without any side effects worth mentioning and work and drive all the way through. Of course, the latter is what I am hoping for.

Tamoxifen seems to give people the same side effects that I am already getting from the Zoladex - hot flushes, dryness, periods stop, tummy weight gain - so I am hoping it won't make a lot of difference to me. As I say, I already have all of that and am coping!

The most annoying thing today was that I was all ready to go to a meeting down at Frenchay this afternoon, and because clinic was running behind and I had to collect my steroids from the pharmacy I was running late. So I called work to let them know, and found that the meeting was actually held this morning! Whoops! Not sure if I had missed an update, or if I hadn't been told! I wouldn't have been able to go this morning, so it is just as well I phoned in as I have saved myself a trip to Bristol in the rain. The only problem is, I am now supposed to be working from home and my head is simply not in the right place to do it. But then, last month (ignoring days off sick or on holiday), I managed to clock in 10 hours above and beyond what I have to do, so if today is a bit of a write-off, I don't think it matters immensely.

Dr Iqbal wanted me to have the radiotherapy planning this Thursday, but I have arranged for 'Focus Groups' with staff and students at the college, to find out what they think of the library service, so I really didn't want to have to cancel that or leave it to the rest of the team to deliver, so he reluctantly agreed that next week would be fine. I seriously had not been expecting him to give me an appointment for 2 days time, so he caught me off guard!!

Next week, I am on holiday - including this friday and this weekend, it will be a total of 12 days off work, so I am looking forward to that and am happy to fit any appointments in then! I know I will feel a bit rubbish for some of it, but I won't be thinking or worrying about work at all, and I do need a break from that. Even I can acknowledge that!

You'll also be pleased to know that I am feeling much brighter than I was the other day. Diet changes are already having an impact, I am certain. Although I am struggling to get off to sleep, but that is mainly because I am anticipating Friday's chemo - this seems to happen quite often during the week before chemo.

Oh, and my hair is probably a couple of centimetres long now! It sounds a lot, but it is still far too thin (especially on the very top and front) to be on display out and about, but it is nice and soft and after this chemo, will hopefully come back in earnest. Just in time for summer sunshine, we hope!!!

Sunday, March 21, 2010

Low energy

I am feeling very, very sad today.

One of the ladies on the breast cancer forum I chat on, one who had created a kerfuffle when she posted that her Mastectomy was a 'doddle', has died. She was my age, had a different (more aggressive) breast cancer than me, had the same chemo regime as me, but with mastectomy after the chemo (this is quite common), and shortly after her operation found she had secondary cancers, specifically, in her brain. (FYI: secondaries are breast cancer cells that have spread - it is possible to get another primary cancer which would be entirely unrelated to your original breast cancer)

I spoke about her before in my blog: here and here.

She got pneumonia and was hospitalized on Wednesday. On Friday, she died. Just two months after her secondary cancer diagnosis.

I am also struggling a little bit today as I feel very tired and my eyes are playing up. They feel sore, so I have probably got a tiny bit of face cream in them, which means they are streaming and that in turn makes my eyelids feel sore and puffy, so I generally feel a bit crap. I had been feeling tired on Thursday and had a slightly raised temperature, but this seemed to get better. Then on Friday, I didn't help by going out and having lots of beers with Luke & Greg. We had a laugh, but I have been paying the price of a hangover since then!

I also think that our new diet (which we have only been following for a week) is not helping. The idea was that we would have a bigger lunch and a smaller evening meal. I knew I would struggle to have a bigger lunch as I have no time or inclination to eat a big meal in the day when I am at work. So I had my usual kinds of lunches - soup, sandwich, those Innocent Veg Pots, fruit, yoghurt. And then evening meals this week were things like beans on toast, scrambled egg, tuna sandwich. In essence, I just don't feel like I have been eating properly at all and as a result, my energy levels are struggling.

So I am starting again today and have had fruit, yoghurt and peppermint tea for breakfast, and will have a salad for lunch. I've made a list of meals from my 'Superfoods' book and hope to have the energy to prepare them. Greg and I both suffer from low energy after a day at work, so neither of us wants to cook. We are lazy sods really.

I just feel so different to how I felt at the beginning of this week. I started a beginner running programme last Sunday (run 1 minute, walk 90 seconds, x 8) and tried to do it this morning, but only managed half at a very slow speed. Here's hoping my energy comes back when I start eating properly again. And no more drink!

Wednesday, March 17, 2010

Genetic testing

I've been back down to The Heath in Cardiff today to see the Medical Genetics team to discuss testing to see whether I have either of the two gene abnormalities that have so far been identified as increasing the risk of breast (and ovarian) cancer. These are called BRCA1 and BRCA2 (literally BReast CAncer 1 and 2).

We went through my family history and agreed that me, mum and gran all having breast cancer does put me into the 'high risk' category. There are 3 categories:
- High, means that you will be offered annual screening between the ages of 35-50, reducing to every 18 months after that.
- Moderate risk, means screening starts at 40, and
- Normal means you join the usual national screening programme at 50.

The counsellor explained basic genetics to me. We each carry pairs of genes and inherit one from each parent. So if my mum (for instance) had one 'good' BRCA gene and one 'abnormal' one, I have a 50% chance of inheriting the bad one. So does my brother. I'd inherit the other one of my pair from my dad, but as there is not any massive history of any cancers on that side of the family, the likelihood it has come down that path is too low to worry about.

So I have agreed to be tested, as I would like to know in order to help me make decisions - in particular, whether to have a 'prophylactic' (or elective, risk-reducing, preventative) mastectomy on my healthy boob when I go for reconstruction.

Being identified as having one of these genes means that your lifetime risk of getting breast cancer is 50-80%, and of getting ovarian cancer, 10-40%. This is versus the 'normal' risk in the population of getting breast cancer of 10-11% and ovarian cancer of 1-2%. So it is a significant increase, but still not an absolute.

Having a mastectomy (or having your ovaries removed, called an oopherectomy) significantly reduces the likelihood of developing it in the future, but does not elimiate the risk entirely.

If we find I don't have the gene, it is highly unlikely that my brother carries it either. It is much more likely that me, the one wot has had breast cancer, would be a carrier than someone who hasn't had any cancers. However, if I do have a gene, he could also have it and will need to keep a closer eye for prostate cancer, and his daughters, my neices, will fall into the 'moderate risk' category and could be eligible for additional screening. But lets not worry about that too much as they are young, breast cancer is an adult on-set disease, and science will have improved a lot by the time they are at potential risk.

The other thing that has crossed my mind, when thinking about this in the past, is that if I did have the gene, would it make me reconsider becoming a mum. Maybe. I would have to really think about it. But I suspect I would go ahead as, as the counsellor pointed out, science will be a long way ahead by the time they are 'at risk'.

So, I am going to have blood taken as part of my routine appointment next Tuesday so I have a form to ask them to take more for the genetic testing at the same time. It takes 3-6 months for the testing to be completed (it is a little more complex than a routine test!) and when the results are in, I'll be invited back to discuss them. Keep everything crossed that me, mum and gran have just been 'unlucky' and that this thing doesn't having ongoing repercussions for the whole family...

Friday, March 12, 2010

Walk the Walk

OK, we're feeling inspired today. If you haven't seen the "Marathon Man" programmes about Eddie Izzard running 43 marathons (that's 1166 miles) in 51 days then you truly, truly should.

I was in tears last night watching it. It really struck a chord with me. You know I am reasonably no-nonsense, and you will have seen from my blog the other week about the frustration of being unfit that I am impatient, but seeing Eddie so dedicated to his effort, so cheerful as he continues through it, through pain and fatigue, is just awe inspiring. I love it when locals join him on his journey to encourage him on, whether they were the unemployed boys or aimless kids from Merseyside or the mountain rescue team in the Lakes, or just the girl on holiday in Wales whose dad "told her to catch Eddie up". He touched so many people on his journey, and I feel honoured to be able to share it on TV.

It left me crying for a lot more last night - hard to explain, but I was having another good sob. And also getting angry, again directed at people who bemoan (what I consider) small problems. Even while feeling angry and intolerant, I still had that nagging voice reminding me that everything is relative, everyone deals with things differently, but can I admit to frustration with work colleagues who are filling silence with daft speculation? (I have no problem with reasonable speculation, but get real!). With others who cannot see that change is inevitable and have the confidence to roll with it? I'm not just talking about my immediate team - who on the whole I have the utmost respect for and love to bits - but other people I work with too. I was very tearful still this morning, but getting a good few things done at work has helped, and I am back to being a little more understanding again.

What I AM left with, it still the feeling that the healthy do not try hard enough. That you are capable of so much more than you realise. I posted a Facebook status in my frustration last night: "Em has got really emotional watching Eddie Izzard's marathons. Don't give me excuses, get off your arse and get on with stuff. Seriously."

And bless you Charlotte, you have risen to the challenge (wine fuelled or not, you are committed now!!!) to Walk the Walk with Greg and I. It is a half marathon walk, no running allowed, on 4th July. You have to wear your decorated bra with pride. Men and women are allowed to take part, and you need to raise £100 each in fundraising.

I haven't started the fundraising yet (I'll give you all a break from having given so generously when I was diagnosed and started all this crap!!), but nearer the time, "Team Flora" (don't ask, it's a long story!!) will be coming!!!

Or why not join us, on what will hopefully be a sunny day in July? I've promised Charlotte alcohol afterwards, so let's party!!!

Monday, March 8, 2010

Monday Monday

OK, it is monday morning, 11am already. I slept reasonably (took the first of my ration of 5 sleeping tablets last night), and woke on and off with the various radios and alarms going off around me. Normally, I am straight up and awake or even awake before alarms go off, but today they were buzzing all around me and I was barely aware. This is what Greg is usually like, not me!!

I dozed while he got ready for work and left, and eventually got up to get headache tablets and breakfast around 9am, after calling in to work to confirm I won't be going in today. A little catch up on 4OD for more episodes of Glee, and now I am about ready to get up properly.

I am still feeling very slow, and have a hunch I will get frustrated today. In my head, there are 101 things I want to do, but I don't think I will have the speed to do them all. I must try and prioritise and pace myself.

First, tidy the house. I can't do anything until the house is cleaner.
Then.... see if I feel up to going to the garden centre to sort out Mother's Day presents (you know what you're getting, mum!!!! ).
I'd also like to tidy out some clothes drawers that are overstuffed with things I can't wear, sort out my photos on the computer, and delete some emails from my work email account before it stops me sending any more (very, very imminent!).

I also want to plan some meals as I have spent the past 2 days eating odd things and G and I have agreed to start having bigger lunches and smaller evening meals from this week onwards. He wants stuff like poached egg on toast for dinner. I am not good with a big lunch - I don't have time for it when I am at work, and I just end up snacking lots more in the evening, so I suspect we are going to be eating very different meals on this 'regime'. Hmmm. We'll see how it goes.

I am still going hot and cold. My heart is thumping and I feel short of breath, so I need to take it all slowly. I promise I will. xxx

Saturday, March 6, 2010


Feeling low has started a day early today. Tired, but not sleepy, too hot then cold again. Hungry but not. Want chicken nuggets, but not got any!

Had a nice day out driving around Wales, but got sleepy around 5pm. :-(

Wonder if it arriving early will mean the tiredness leaves early too? Hope so.

Thursday, March 4, 2010

Herceptin #2 all done

Yesterday's herceptin was easy peasy. 1 hour being infused, half an hour being observed. I napped, read, the time went quickly. Greg went for a drive - too far, he ended up having no time at his destination before I was telling him to come and get me. I needed him there just in case I had a reaction, but no problems. We went for a Mexican meal afterwards (and some wine, oops!).

It's been a long day at work today - arrived at 8am as I had 'World Book Day' events to present, and got everything done by 6.15pm. Some things have had to be delegated, but I know I have patches where I don't do enough of that, so it's not a bad thing.

I'm very proud of my team for the way they are coping with me, with the uncertainties at work, with the crazy ideas that I have and get them to work on. They are simply fabulous. After the online newsletter and World Book Day, we now have had a 47" plasma screen delivered (yes, I ordered) so now we need to get it installed and hooked up to show advertising on a powerpoint display. Should be interesting! Oh, and a SoundEar. We are very excited about this - it should keep the noisy students less noisy...

I took my 2nd dose of steroids a little late today, so am currently still quite awake, but thats OK. I have some chores to do tomorrow morning before I go to the hospital, and then Waitrose as Sophie Student is coming over for lunch. Her tutors have recommended a home visit, so she'll get to meet the cats that I'm always talking about!

Talking of whom, Hobbes is now on as many drugs as me, I reckon! Took him to the vet a month ago as he's had a recurrence of cystitis (he has it this time last year too), and the initial drugs haven't cleared it up so he's had a bucket load more. He is now getting tuna twice a day to hide the drugs in!! He's quite liking that bit!!

He's had a couple of jabs (anti-B's and anti-inflammatories) and is now on Cystease capsules (emptied onto food) and Metacam (more anti-inflam). Can't say it is working yet, he is still peeing in the shower and spraying the house in random places. Sigh.

Right, must remember to try and get tickets for V festival tomorrow - Faithless, Kasabian and Pet Shop Boys are all on the bill, so it would be great if we can go. More stuff ticked off our list.

We saw Rhod Gilbert a couple of weeks ago, and it was brilliant. Greg was right to suggest we saw him in a Welsh town, it was totally random! Click on the link to see one of his classic gags.

Tuesday, March 2, 2010

All set for chemo #7

Hurrah, had bloods done today - more delays at the clinic, but I had a word with the nurses and told them I had to leave by 2pm as I needed to get back to work, and I think they bumped me up the list as I was seen only 30 minutes after my appointment time despite everyone having been told there was a 90 minute delay.

The oncologist had had to go to a meeting, so there was a specialist nurse in his place - at this stage, that was fine, as she actually listened and made notes about what I was saying. She couldn't prescribe, but made notes of what drugs I asked for (essentially, just sleeping tablets and mouthwash) and confirmed that radiotherapy should only be for 3 weeks. She said she would find out when it will start and get someone to call me or send me an appointment through. Apparently, they will do radiotherapy appointments from 7am to 7pm, so if I can get an evening slot, that would be great. I can continue going to work.

I've been reading comments about radiotherapy and quite a few people say they feel more tired after it has finished as it has a delayed effect. Well, I have time off booked towards the end of it, so it may be that I spend it sleeping!!!

2nd Herceptin tomorrow. I did have an appointment booked to have a PICC line inserted, but when they called last week to confirm it, I had another chat with the nurse about whether I needed one yet and decided to cancel. So, it'll be cannulas into the hand for the forseeable future.

Oh, and apparently the reason I was a bit of a witch to Greg after the last lot was down to the steroids, not hormones. The nurse seemed very sure of this. No doubt, he is really looking forward to that again next week!!! ha ha ha

Monday, March 1, 2010

Busy busy

My mood has been brighter this past week, but I haven't posted as I have been too busy!! Last week was full of 9 and 10 hour working days (OK, so I'm sure plenty of people do more, but that is a fair few for me), visits to Charlotte's and winning at ten pin bowling.

We have lots going on at work, not only the transfer from Uni to College, but we've also just started a book stock review (yes, my idea, so the workload is my fault), been helping the team get the second issue of our newsletter blog ready (you can take a sneaky peak here) and preparing for World Book Day this thursday. I have cobbled together an agenda of seminars - not sure if anyone will turn up, but it is worth a go. I put together the slides for a talk on 'Copyright for Teaching Staff' today so have spent the afternoon reading copyright licenses! I have so much fun....!!!

This is 'appointment week' again, so off to the hospital tomorrow for bloods. I am hopeful that things won't be quite as chaotic as last time, and I have to be out of there by 2pm at the very latest as I have a library teaching session to do at 3.30pm, back at the College. The Veterinary Nurse teaching staff want a refresher on how to search for full text journals and get hold of published materials. I really want to find out about the radiotherapy this time - I definitely need to know a start date and I'd like to get an idea of whether I will be likely to drive myself there or not, at least initially.

I warned my local friends that I may be asking for lifts during that time, but obviously they can only do so much as they have jobs and children and lives of their own, but I know they won't mind helping out if they can.

Wednesday is 2nd dose of herceptin, and Friday is the 7th chemo session. So, so nearly there. I am bored of it now, I just want to get the last one done and dusted so that I can get better and better instead of being knocked back every 3 weeks. I just start to feel great when they dose me up again and I feel crap for another week.

The good news is, the evenings are getting lighter and spring is nearly here. Yay!