Tuesday, December 7, 2010

Mammogram results

Oops. I was so excited about reporting back about Faithless, that I forgot to post about the result of my mammogram. Only 7 weeks after I had it, and I finally got to see Mr Ghosh, the consultant surgeon.  As I thought, no news was good news and there was nothing of concern on the x-ray, and he did a hands-on examination and there was nothing wrong there either.

We had a brief catch up about my treatement so far, and how far along the herceptin I was, and he wants to see me again in 6 months time.  That concerned me slightly, so I asked why so soon, and the response was that due to Dr Iqbal leaving, they didn't want me to fall through the gaps.  I think I will see another oncologist for future heart scan results, but it does feel better to know that Mr Ghosh, who has been with me from the start, will continue to take a close interest. As I was waiting outside his room, the husband of the patient before me was chatting about how brilliant Mr Ghosh was. I think most (if not all) of his patients feel like that. Reassuring.

I also took the opportunity to ask about reconstruction. He said to give them a call when the herceptin was all done, and they would arrange for me to see a plastic surgeon. Mr Ghosh doesn't do that bit, he leaves it to the experts. However, he did say that they prefer to be able to do a reconstruction using tummy fat now, and potentially no muscle. This would be great. The current (old?) way was to take muscle from the back or the tummy to hold in an implant, and this obviously is a big operation and can cause problems in the donor site (e.g.weak tummy muscles).   An implant also isn't always what you want. Having a foreign body in you after what you've been through isn't the most reassuring.   So they are starting to use tummy/thigh fat instead. Its less likely to be rejected, although it can be reabsorbed into your body, and you get a tiny bit of lipsuction at the same time! Result!    A friend who recently had this done was black and blue afterwards, but still able to come along to a party in the week after the fat suction!

Herceptin No 10 tomorrow. Bupa nurses have confirmed by phone, and we are again hopefully of a pre-9am start. We shall see.

Oh, and we're moving house on the 20th Dec. And I'm changing jobs (just location & role, not employer) and finish in my current post on 17th Dec. Don't talk to me about Christmas. So I still feel like I have a lot going on at the moment and am a bit tearful. Happy, busy, all positive - just a bit exhausted.

Sunday, December 5, 2010

God is a DJ

The week that has just gone, shall henceforth be dubbed "Faithless week".

Yes, indeedy, we managed to see Faithless live not just once, courtesy of a lovely lady (B, you know who you are, thank you!!!) who works for the Manchester Evening News Arena, but actually twice. A friend was able to get tickets for the Cardiff gig on Wednesday, so we went there first.

We arrived slightly late on Wednesday, due to having been at work and then needing to get food - and not realising what time the main act would come on - so we missed the support (Example), but arrived just as Maxi Jazz and co were on their opening number. 2 hours later, a few beers and lots of dancing, and we walked back to the bargain Travelodge which was our abode for the night. If any of you follow me on Facebook, you'll see from the numerous posts I put that I enjoyed the night!!! Greg wasn't all that impressed at walking back to the hotel... it was only just over a mile, but bitterly cold. J and I kept thinking our hotel was around the next corner, so turned down the taxi that Greg managed to hail! Oops.

So yesterday (saturday) was the Manchester event, and we decided to arrive early so that we could get some of the Christmas shopping done beforehand. Mistake. Big mistake. Huge. (well, it wasn't that bad, but it sounded good!)

We found the Travelodge (so we thought) but couldn't check in because we were too early. Or, that should be we COULD check in, but it would cost £10 more. What a rip off. If the room is ready, its ready. If it isn't, it isn't. Obviously some rooms are ready, so they think they can charge extra! We declined and went straight into the city centre instead. Found all day/evening parkng for £6 right opposite the venue and walking distance from the city, so was very happy with that. It was raining slightly and we both have colds, but we could cope with hat. What we couldn't cope with was (a) MASSES of people everywhere - we hadn't really een thinking about this being a saturday before Christmas, on a week when many people had been housebound due to the weather; and (b) THE SHOPS ARE ALL THE SAME AS ANYWHERE ELSE!!! So uninspiring. Even Selfridges didn't offer anything suitable for my friends or family. So we bought exactly nought. Well, a drink in a pub , a hot chocolate in Starbucks and a meal in Tampopo was as far as our spending went.

On to the gig, and we arrived in plenty of time to see both support acts. "Union" were a DJ set who seemed to think holding your deck and laptop behind your head while you pressed buttons was the equivalent of holding your guitar behind you back. Errr, no.

Example is more well known, and I was reasonably open-minded. If you like his music, you'd have love his set. The sound quality on the first song was a bit rubbish - I always theorise that the sound is set up for the main act, so the support always has a rum deal. But it seemed to get better, so maybe they adjusted some settings. But apart from "Kickstarts", we just aren't all that taken with his music. One of the songs just seems to repeat the line "We came, we saw, we killed the crowd" over and over again. Rubbish.

The Faithless set was totally amazing, as we knew already. This time we were 100% sober and in a seated area, which isn't ideal if you want to dance, but we managed! And we were very grateful for being pretty near the front too. The chap to Greg's left was a a little lairy, but in a happy, chatty way, not threatening. Greg reckons he and his mate has a certain type of 'bracelet' on that required them to be home by 10pm... and they did disappear early (but I thought it was because he pulled!).

The girl to my right was fine - except that she kept going "Whoop, whoop" right in my ear and was singing the wrong words/at the wrong moment all through!

The set balances old songs and new, and some serious upbeat tracks with some of the slower instrumentals, to give both us and Maxi Jazz a bit of a break. He talked to the crowd a lot more than in Cardiff, but it was a much bigger crowd and this one was being recorded and sold after the event. Amazing stuff. You don't need to have beer to enjoy this stuff. Faithless never put a foot wrong.

This one summarises it all for me (and please note, I would like it as my funeral song!!)

Seriously, it is worth a click!

Thursday, November 18, 2010

Still hectic and busy

I feel like I am always making excuses about why I haven't done x or y at the moment. I'm sure people must be getting fed up with me. But it does feel as if life has been a little non-stop for the past 6 months+, mostly all my own fault, I think!

As well as a few months where many workday evenings and weekends were spent doign DIY at Greg's house, I have also done a couple of small tidy up DIY jobs at my house (i.e. paint the kitchen ceiling, only 2 years after the wall between the kitchen and dining room was removed!!, and fill and paint the holes in the wall where a curtain rail used to be). So the working day often hasn't finished until 8pm or later due to that, and food has been take aways or 'quick' meals rather than relaxed and nutritious.

I was also determined to implement more teaching at work. It was something I had wanted to do last year, but treatment meant it would be foolish and unfair on the rest of my team to implement it. This year, I have been present and so could do my share, so we did it. I also needed to have reasonably high teaching hours, as I am doing a course called the "Mini Academic Development Programme" which supports academic (teaching) staff to become better teachers. The 2 modules of the course could count towards a PGCE (post-graduate certificate in education), if I wanted to continue it on. I need to log 45 hours of teaching.... I haven't counted them up yet, but don't think I'm quite there yet...

At work we are also one member of staff down compared to last year, and although no-one is dropping any balls - everything is getting done, customers are getting served - we have had to reduce the opening hours of the library and the remaining team are much more customer facing than ever before, which can be exhausting. Saying the same things to students (be quiet, turn your phone off, take that drink/food/attitude outside etc) day in, day out is very tiring.

We're also preparing for me to leave the team in January. I'm trying to get some things done before I go so that I can leave everyone as prepared as possible, and they are fretting about what is going to happen when I have gone. It's not going to be ideal: I won't be replaced by a new manager, as it is probable that the whole team will be transferred to the College's management at the end of July 2011, so there is little chance of getting someone in at the right level to manage the team for just 7 months. Instead, my current boss will look after the team and I'll keep a hand in to support her as much as I can. We'll get someone else in to take on the day to day subject support work that I do, and to relieve some of the remaining team so that they can concentrate on any work that needs doing in preparation for the transfer.

It's not ideal. I am still torn about leaving. I will miss everyone so very much, and will probably always feel guilty for leaving them - but I was given an opportunity to stay with my current employers and it was (and is) the right decision for me to take it. The team I am going to are also great, and will be a pleasure to work with - and I suspect it won't be quite as stressful a job.... but only time will tell!!

Oh, and buying a house while selling two others. That's why I feel a little busy at the moment. If I don't return your call or email instantly, it's not personal. xxx

Wednesday, November 17, 2010

Another item nearly ticked off the 'to do' list

Well, we have been working very hard to get Greg's house ready for sale, and now it is (all bar putting in some carpet, which will be done this weekend). Mine is now up for sale too.

We have located a house to buy already.... and in fact, have made an offer and had it accepted. With the amazingly kind support of my parents, we are able to purchase a house before we have actually sold our existing homes.

The new house is a little bigger than my current house, but is based on the side of a hill with fantastic views (and a deck from which to admire them), no overlooking neighbours - in fact, only a handful of houses on the no-through road, all to one side of our new property, wood burner, Rayburn, and much to Greg's delight, an enormous workshop AND a garage! It is a 100 year old cottage that has been beautifully extended and renovated. After all of the DIY that we have done at Greg's house, not having to do anything at the new place is such a huge relief!

The only downside is that it is a little further away from Bristol than Monmouth is, so my commute from January is going to be a little longer. Even from Monmouth today, it took me 1hr 20 minutes to get to the University's Glenside campus. 50 minutes of this time is sitting in traffic on the M4 and the ring road. I will be getting the train from Gloucester some of the time, methinks....

We could be moved in by Christmas, if all goes to plan. Watch this space!

The kindness of strangers

A lovely lady from the online cancer forum that I chat on has arranged for me to have free tickets to see Faithless in Manchester! How amazing is that?

She had read the blog, seen that they were on my list of things I'd like to do, and as she works for the venue is able to get staff complimentaries.

I have the tickets in my sticky mitts, and am so very grateful for her kindness in arranging this.

The power of the internet, and the kindness of strangers is a wonderful thing.

Herceptin at home

I had my first "Herceptin at home" experience yesterday. After being told that this would happen, I hadn't actually been contacted by anyone to find out what was going on. Coincidentally, while I was playing telephone tag with the contact at Velindre hospital, the Bupa coordinator left a message on my phone about it. She had apparently been phoning me regularly but not getting an answer (indeed: I work, and am not waiting by my mobile phone 24 hours a day) - and not leaving a message!!! Funnily enough, I had no idea that it was her or I would have called her back. Apparently, she doesn't like to leave a message because of patient confidentiality. She could have said something like "This is Cathy from Bupa, please call me back on xxxx" couldn't she? Sigh.

Anyway, it was all arranged, and I received two calls from a more local coordinator and the actual nurse on Monday evening (they were brave enough to leave messages, thank goodness!) to confirm it was all set. The drugs will be arriving at 8am, and the nurse will arrive at 8.30am to get cracking. Great.

You can probably tell from my tone that it didn't go quite to plan! Sonia the nurse did indeed arrive on time, but the drugs did not. In fact they didn't arrive until gone 11am, so it was past 1pm before it was all done. Sonia was not happy - she had not been informed there was a delay, and the delay to my treatment also caused a delay to her next appointment and a couple of wasted hours. I had to call into work, as I was now not going to be able to go in and cover my sessions on the Enquiry Desk. Luckily they were able to arrange cover, and I worked before and after the treatment from home. Sonia was able to do paperwork while we waited, as well as make numerous calls to people to see what had gone wrong with the delivery. We never did quite get to the bottom of it, but she said she would put in a formal complaint.

Apart from that, having the treatment at home was absolutely fine. She had forgotten to bring her drip stand so we improvised with a coat hanger over the kitchen door, and didn't bother with the pump. Apparently, it was unusual to adminster it in kitchen/diner as most people do it in front of the telly - but I wanted to do some work as it was done, so the kitchen was better for that!!

Sonia was really lovely and easy to talk to, and she has arranged for my next treatment to be on a Wednesday, which is much better from a work point of view. Let's just hope the drugs arrive on time next time!!!

Delayed results

Apologies again for having neglected my blog. I am sure everyone will have stopped checking for updates now!!!

Anyway, I was supposed to have seen the surgeon, Mr Ghosh, on 5th November but received a letter cancelling that appointment. I had to call to make another. And the next date they can do? 3rd December! This is rubbish - I don't get the results of my mammogram until then, thats a full SEVEN weeks of waiting!! I know that I should call and see if I can get the results over the phone, but I admit that I am burying my head in the sand a little and working on the assumption that if there was anything to worry about, they would not leave it for 7 weeks before telling me. I'm pretty sure they would call me back sooner if there was anything to worry about.... wouldn't they?

Thursday, October 14, 2010

Squished and Squashed

Today was my first annual mammogram. I won't lie to you, it is a touch uncomfortable. Having your boob sandwiched between two blocks of perspex as tightly as possible, while you hug the machine and have your face pressed against the cold metal, while they hand tighten the screws to get it that little bit closer, isn't the most pleasant way to spend an afternoon, but in reality it only lasts seconds. And yes, you do want them to get it right and get as much flesh in there as they can, so you get the most thorough check possible.

I walked into the hospital with my usual confident stride, read some exciting papers about the Browne Review while I waited to be called, and was happily chatting to to radiography nurse as I undressed and got into position. It was only as I was leaving and she commented that "the first one is always the worst" that I realised that it was and shed a couple of tears. I could put the possibility that the scan might discover more cancer to the back of my mind before. Now that they have taken the image, I can't quite so much. It's quite scary. I don't get to see Mr Ghosh for the results until 5th November so I asked whether if they found something, would they call me back sooner? I can't imagine them leaving it more than 2 weeks, butI may phone next week to ask if there are any preliminary results...

In other news, last week I had my 7th Herceptin treatment. As before, it was a loading dose given at Velindre, and I had no reaction to it, so just spent the day reading (work stuff) and relaxing. Next one on the 26th October, and then the rest from home. I have yet to be contacted by Bupa to see how that all works, but am still living in hope that I can have the rest in the evening at home.

This last couple of weeks have been very hectic. We are still working on getting Greg's house ready for sale. It shouldn't take much more now. Some grouting, bathroom washbasin, wallpaper and painting to do, plus a few smaller bits and bobs, but the bulk of the work is done now.

This week, ma and pa visited on their way to Devon (Monday), then we went to a Groove Armada gig in Bristol (Tuesday), then worked late (Wednesday) and today was boob-squashing day. I've also had my house valued today: not worth quite as much as I'd like, but its not too far off my estimates. Will get some small things done like painting the kitchen ceiling (it is still has raw plaster where we had the wall taken down!) and then get it on the market, so that we are ready to buy somewhere new... Exciting!

More decorating at Greg's at the weekend. Hopefully a final push...

Tuesday, September 21, 2010

One year. Done.

Today, 21st September 2010,  is the first anniversary of my mastectomy.   Some might expect me to be sad about that, but I am not.  What's done is done, and I can live with it quite easily.  No psychological damage, my fella still fancies me, I've adapted my clothes to fit.   Doesn't mean to say I won't have a reconstruction when I can, but it isn't causing me any day to day issues.

If anything, I want to celebrate that I have made it to the first anniversary and I feel absolutely great.  I have withstood the treatment reasonably well, my hair is coming back thick and fast (literally) and so far (keeping everything crossed here) the cancer has been beaten.  

I have an appointment for my now annual mammogram check on 5th October, followed by a meeting with the surgeon (to discuss results, I guess) on 4th November. Not brilliant that those dates are a month apart, but I am confident that if there is anything worrying to see on the scan that I would get to see him a bit sooner!

The other reason to celebrate today, is that I saw Dr Iqbal for the results of my latest heart scan, which I had yesterday.   Initially, the result was not available on the screen when he looked for it.  They had promised me that an appointment the day before the clinic would be OK, but obviously they hadn't quite got around to updating the system yet...  My appointment with Dr Iqbal was at 5pm, so he rang and rang (then got his registrar to ring) and there was no answer to be able to get the "unvalidated" result.  Then, Magical Michelle rang - and of course, someone answered, and they gave the result.   I now have an ejection fraction of 53%! Yay!  So this means Herceptin treatment can recommence.

I had 6 treatments out of 18 before it got stopped, so now have another 12 to have.  The bad news is that I have to have two loading doses again, which mean a day at Velindre Hospital each time to check there is no allergic reaction.  The good, nay, BRILLIANT news is that they are now able to offer the remaining treatments from home!  Yes, indeed.  Bupa have been subcontracted to deliver treatment from your own home.  So I guess they will rock up with a drip, the medication and a nurse and hook you up in your living room!  Apparently, this is saving the hospital a lot of space and time, as there is less of a crush in the waiting and treatment rooms. For me, what I am hoping it means - and Greg shakes his head in despair at me - is that I can get a more convenient appointment time and still do a full day at work on treatment days.  Seeing as it doesn't cause any ill side effects (apart from giving you a dodgy heart, for which I had no symptoms), I don't see this as a problem.

12 more treatments at 3 weekly intervals will take me another 9 months. So if they start in October, they'll be finished in June 2011. So, still a long way to go.

The other sad news, is that Dr Iqbal is definitely leaving, so this may have been the last time that I will see him.  I thanked him for everything he has done for me.  I also quizzed him on what his plan for us trying again for a baby would have been.  The detail of the plan is this:
- 9 more months of herceptin (until June 2011)
- then 6 more months on zoladex (December 2011)
- then come off the zoladex and wait for my periods to come back (sometime early 2012)
- then come off tamoxifen and try and get preggers (2012...)

Lets hope we get that far without any more hiccups.  I'll be 39 by then.... eek!!

But I am happy.

Emma and Greg 17 Sept 2010
p.s. Photo courtesy of Jenny Grodzicka - sorry, I should have asked permission before I stole it! xx

Sunday, August 15, 2010

I've had a haircut!

Actually, I had it cut last Tuesday but haven't had time to update here since then.

It actually looks as though it is meant to be this short now, rather than all fluffy around the edges!!   And it has made it look a bit less grey, which can't be bad.