Remember remember the 5th of... er... January

Yesterday I was off to see my surgeon to schedule my surgery, and I'm due to go in on the 5th January, which means I should have a fairly healthy few weeks over Christmas and New Year.

I've decided to go for an implant based reconstruction, which means that I should only be in hospital overnight and be mostly recovered within a month. In the initial op a temporary saline implant will go in, and be replaced later with silicone. The reason for this is that radiotherapy can distort the skin and damage an implant, so a better cosmetic result is achieved by going back after all the treatment is complete, but means that most of the skin is preserved. During the gap, I can change my mind and go for a flesh based reconstruction.

When I spoke to the surgeon (who is based in Essex rather than Berkshire) he was very surprised that the plan was to give more chemo after surgery. He rang his oncologist colleague who gave the opinion that it wouldn't be necessary, especially if I'd had a good response to the previous treatment. I don't need to take a decision on further chemo for a while yet, and I suppose it will be informed by the result of the tumour analysis, but it's very confusing to have 2 such contradictory opinions. Hopefully once the 2 sets of doctors have spoken after these results they will come to a mutual opinion.

I drove myself over to Essex yesterday and have stayed today. Glad I decided to have a rest day before heading home as for some reason I'm especially tired today. I may have been over doing it again!

All Change

I'm now just about recovered from the last treatment, and it has been noticably harder this time around. More tiredness, more achiness, more sore feet and hands. It's also taken longer to start feeling better. I have at least managed to make it out to the office Christmas party and a leaving do, although I was only able to stay a little while at each. It was nice to get out of the house and dress up though.
Last Wednesday I was back to the hospital to meet the oncologist to discuss the biopsy findings. Not unexpectedly, the biopsies were not able to yield enough cancer cells to be able to do an HER2 test. In fact, they didn't get any cancer cells, only pre-cancerous ones. This means that my treatment regime is being changed, and by quite a lot more than I expected. So here is the new plan of action:

• Surgery will be next, probably within a few weeks - most likely straight after the New Year, but earlier is also a possibility. I'm going to see my surgeon tomorrow evening to get it set up, so I'll know then when I'll be going in.
• After I'm recovered from surgery, the plan is to give me another 3 chemotherapy treatments, Taxotere only. The reason being that the FEC had no effect, and 3 effective chemos is not really enough. As they know that the Taxotere is effective, and given my age, it is better to over treat than under treat.
• After the 3 chemos is still a bit vague, and will depend on the outcome of surgery. If the HER2 test is positive, then I'll have herceptin (some of which may be given in cobmination with the chemo). Herceptin is usally a 6 or 12 month long treatment - given as an injection once a month. My understanding is that the side effects are not too bad, so wouldn't stop me from working.
• Radiotherapy is still likely to happen, after the second round of chemo. Again this will be decided on based on what happens when I have surgery.

So, I'm obviously very happy that the treatment now seems to be going very well, but a little dissapointed that the treatment will be going on longer than I thought. It means I probably won't be back to normal until April rather than March. Most depressing is the though of another 3 chemos (although its really only 1 more in total than were originally planned) to go, and that they'll be post surgery when I'll be feeling quite ill already (with my Mum there was a 3 week gap between surgery and start of chemo, they may give me a little longer as I've already had some).

I'm also starting to get worried about the surgery, it being moved up and the fact that time seems to have flown by means that its snuck up on me. It's not just a physically tough experience, but a psychologically tough one, and I'm starting to get anxious about it. I also have a fear of general anaesthetic, I find the concept of being chemically knocked out quite terrifying. Still, I've had 2 so far and woken up from both...

More Hospital Time

The blood tests I had for blood clotting came back before I'd even finished receiveing my chemo treatemtn, despite the fact that they had to be sent over to a different hospital. The results were borderling, so it was decided to send me for a CT scan in case of a pulmonary embolism. Apparently there was some debate on whether to send me over to Slough immeadiatly, or if it could wait until morning, but in the end it was decided to be OK to wait, and I was given an appointment for 10:30am yesterday.

I was a little worried about this, but the oncologist reassured me that it was most likely nothing, they just wanted to be certain. I was also worried about spending another day in hospital, but as it turned out I was in and out of Heatherwood hospital in just over half an hour. And within an hour, I had my result - no indication of any blood clots. The tightness in my chest is most likely a low level infection or a result of lower heamoglobin levels, so just something to keep an eye on.

So rather than a day in hospital, I spent the day in Reading with Kate having a girly afternoon, we went to see Twlight - not exaclty the greatest movie ever, but a nice few hours of escapism.

Penultimate One

Long day in the hospital today, in part because of strikes but mostly because I've had a lot done.

First up was meeting with oncologist to discuss my latest MRI results. The word used was delighted at the change to the tumour. Also discussed the biopsies- I said I was happy to go ahead if the pain could be controlled. Doctor said no problem to have some sedation, but chat to the radiographer first.

There was a bit of a wait to arrange this, as it was pretty busy, but I went for another mammogram and to see the head radiographer who explained that she has a new technique of getting samples that is much less likely to cause pain- its faster and goes through less tissue. I also had another ultrasound, which is the first time I've been able to see the change to the lump and it really is quite striking. It's obviously a lot smaller and a lot less dense.

Next I was back in the mammogram machine but rather than sitting up, I was laid down on my side and given a big dose of anaesthetic. I barely felt the biopsies this time and they managed to take 10 (vs 4 last time before being in too much pain to carry on) and I only felt the last 2, and that only mildly, which was a big relief as I was really nervous.

Given the change in the lump, the chances of getting enough cells is pretty low, but probably worth it. The oncologist mentioned that they may bring forward surgery if they can't get anything from the biopsy, and then have some more chemo after.

Next it was back to the chemo suite to go back to the oncologist for a quick check of my side effects. I mentioned that I've been getting breathless and have had a little chest pain, and the next thing I knew I was being whisked off for a chest X-ray. Thankfully I didn't have to wait more than a few minutes, and then I was back again to have my blood pressure taken and prepped for chemo. After a pause to confirm that the X-ray was clear, I was set up with my needle which went in first time, thankfully. They took a blood test as well to confirm that I don't have a blood clot on my lung, unlikely but they have to check. I should get the results this evening.

Then it was back into the oncologist to set up an appointment for next week when they should know if they have enough cells for the HER2 test and if not to discuss bringing forward surgery.

So now it's 10 past 3 and the Taxotere has just started going in. Considering I got here at 10am, it's been a long day. It's been a pretty good day as far as treatment days go as things are looking up. Glad I've had Kate with me for company. Going to pop into town to pick up dinner and then I'll vegetate on the sofa for the rest of the day- I think I've earned it.

Some Good News at Last

I received a phone call this morning from my breast care nurse. Initially I panicked slightly, as they usually ring to impart bad news, but today was different.

My MRI results were reviewed this morning at the weekly meeting to discuss all the breast cancer patients, and apparently my response to the new treatment has been described as excellent. So the improvement in the lump that I felt wasn't just in my imagination and it appears that the lump is shrinking well. Better response = better prognosis, so I'm very happy.

On the other hand, my response has been so good that there's a concern that by the time I get to surgery there'll be no cancer cells left to test. As its not yet clear if I have an HER2+ cancer, this could cause an issue as they can't give Herceptin without a positive test. There is some debate as to how effective Herceptin is for my stage of cancer, but frankly I'll take any small statistical advantage that I can.

This means I have to go and speak to the head oncologist before my chemo tomorrow to discuss having a further biopsy. There were so few cancer cells (as opposed to pre-cancerous cells, of which there were a lot) that they simply weren't able to test. Now the chances of getting more cells are still pretty low, but it could be the only chance of getting the information. I'm quite happy to have another set of biospies provided that they can manage the pain for me - which most likely means being sedated rather than a local anasthetic. I'm not sure if I can cope with having it done like last time - especially as I know up front how painful it is. Something to discuss tomorrow...

More Scanning

I've been back at the hospital today for another MRI scan to check how the lump is responding to the new Taxotere treatment. I will get the results when I go in for chemo (penultimate one...nearly there!) on Wednesday morning, but from having a feel this morning, I'm glad to report that when I went to check the lump, I couldn't find it. I've noticed that it seems to have been getting both softer and smaller over the last few weeks, and the tissue is still more dense than the other side, but it feels like I've had a lot of improvement over this treatment, which is a great relief.

However, I think I said that it was smaller before the last scan, and it wasn't, so I'm just tentatively pleased until I get the scan results. The more it shrinks, the better my long term prospects are, so fingers crossed.

I've also been for my blood tests today, which will be used to determine if I need a blood transfusion before my next treatment, as last time my haemoglobin levels were low. I guess that they'll either plan that for tomorrow, or perhaps Wednesday morning, but I think it takes quite a long time to transfuse. I may also be affected by the strikes on Wednesday - they're saying all urgent treatments will go ahead, but I'm not sure where chemo falls within the definition of urgent.

A Few Pictures of my Handiwork

Pink Ribbon

Mooses Welcome

Work in Progress

So it's been just over 2 weeks since the last treatment, and I'm pleased to report that the side effects have been easier this time around. Although I still suffered with a mouth infection and sore joints I didn't feel nearly as unwell as I did last time, although I think I've been a little bit more tired.

It's actually been a relatively busy few weeks for me, and its been nice to be occupied. First of all when I went to stay at my parents directly after treatment, my grandparents and my aunt came down to Essex for a visit for a few days - I've not seen them since my diagnosis, and it was great to be able to catch up with them. Simon decided to take a few days off whilst I was down there, so he joined us on Friday night and we stayed until the following Tuesday.

Once we were back home, I decided to start making some Christmas decorations, so I've been pre-occupied with lots of cross stitching projects, which works well for me as something to keep me occupied even when I'm feeling quite rough. I've made a couple of decorations so far and a pink ribbon design - I'll try and post a few pictures later.

We spent this weekend up in Milton Keynes, as my old theatre group were performing Merry Wives of Windsor - I had a fabulous time seeing everyone, and very much enjoyed the aftershow party, which went on until 4am on Sunday - I've spent quite a lot of the time since then catching up on sleep. The show was fantastic, and I felt quite jealous being in the audience rather than the cast for a change. Once I'm better, it's a hobby I'll have to pick up again.

Number 5, Still Alive

Treatment number 5 yesterday went well, apart from a long wait to see the doctor -  my regular oncologist was out so I saw a different doctor, who had a long queue.

Things of note:

• Lump is noticeably smaller and softer - hurray!
• No return of the lump under my arm - also great news.
• My white blood cells have recovered well, but I'm running a little low on haemoglobin, so there is a chance I may need a blood transfusion before my next treatment.
• No flu jab until after chemo, as it's too risky - all my family have had theirs though, so that should give me some protection.
• I'm going off for genetic testing - partly for me, but also for peace of mind for Kate, who is also going for genetic testing in the new year.
• My side effects from the Taxotere were nothing out of the ordinary, but they've made some alterations to my drugs that should hopefully make this round a bit easier - specifically to try and prevent a recurrence of the mouth infections I've been having.
• Just 2 more sessions to go after this, and I'm starting to be able to look forward to retuning to normal life. I'm hoping to be able to get back to work by the end of March.

After I'd seen the doctor, it was into the chemo suite to receive my drugs. Due to the mix up in dates, I had to have an extra steroid dose as well as the Taxotere.  The nurse managed to get the cannula into my hand again, which was a relief as the vein in my elbow has gone very hard. I was lucky enough to get the bed in the suite rather than the chair, so once I was up and running I was able to have a little nap. I get insomnia the night before chemo, so having had 2 nights in a row of little sleep, I needed a rest.

After the session, Kate treated me to lunch out at a Thai place in Windsor, before she drove me over to my parent's house, where I'll be staying for a little while. Simon is taking a long weekend, it's Kate's birthday on Monday, and my Grandparents and Aunt are coming to visit, so it should be a good couple of days.

At the moment, the side effects from the treatment haven't kicked in yet, so for now, I'm feeling pretty good. Last time it was 2 days out that I started to feel ill, so I should have another good 24 hours yet.

A Brief Reprieve

I was expecting to be posting today on my fifth chemo run, but my appointment is tomorrow rather than today. I wish I'd known this before having to get through rush hour traffic to the hospital...ah well. So I thought I'd give an update on what I've been up to for the last 2 weeks, given that I started writing a post a week ago and never got around to finishing it... I'm a bad blogger :)

So, 3 weeks out from the Taxotere and I'm feeling much better than I did when I wrote my last entry.

Overall, it took me about 10 days to get over the worst of the treatment, versus about 5 on the FEC. I'm not sure how much of that was down to the infections I contracted or the treatment however. I also had 2 reasonable days directly after the treatment. I felt feverish for a days or so beyond my last post, and by Thursday afternoon, I was feeling pretty well again. On the Friday I even managed from 10-4 in the office (although that did include going out for a team lunch, which was very nice - thankfully my taste buds have mostly returned).


I had a bit of a treat last Monday night - through work I'd got hold of a ticket to a private viewing of the Wildlife Photographer of the Year at the National History Museum. Simon drove me into London and we had dinner at a nice tapas place and then I went to the exhibition - if you have the opportunity to go - take it, there were some truly amazing shots - especially some of the landscapes (my particular favourite was a starscape - breathtakingly beautiful photograph http://www.nhm.ac.uk/visit-us/whats-on/temporary-exhibitions/wpy/visitorVote.do?photo=2769&category=12&group=1)

I've been splitting my time between home with either my sister or my Mum for comapny and my parent's house this time around, as I've been a bit too poorly to be on my own all day. I've been helping my Mum make curtains for my living room, and am becoming quite good at hand sewing. I hung the first curtain up yesterday, and it looks great apart from the fact that its tied up with string for the next few days to help set the pleats. I've also become a jigsaw puzzle fiend and a mean embroiderer. I have to pace myself though as I get very tired very suddenly. I have a habit of "just closing my eyes for a few minutes" and waking up a few hours later (usually covered in cats - they like an ill person, we're warm and still).

Speaking of which I'm just going to close my eyes for a few minutes to make up for my early get up.

The Perils of Speaking too Soon

Yesterday evening I posted on Facebook that I was feeling almost human again - which was true - apart from a sore mouth and a sore throat I was doing OK.

In the middle of the night I woke up feeling really achy, particularly in my arms and back, and I was cold. I woke Simon up as I was trying to find my glass of water to take some pain killers, at which point he noticed that I was a bit feverish, which is not a good sign. If my temperature goes above a certain point, I have to go straight to hospital.

Simon managed to both find and operate the thermometer, which declared my temperature to be 37.1 - a bit high, but not so high to determine a trip to hospital. By now I realised I actually felt quite sick, but we weren't sure what to do. My Mum is staying with us, and we decided to refer to her wisdom - Simon and I neither being in a position to make a rational judgement. NHS Direct was called, paracetamol was taken and in the end we all managed to get a little sleep.

It surprised me however, how quickly I went from feeling fine, to feeling really quite ill. Went to the GP this morning and have been prescribed various germ killers, so should be back to feeling OK again in a day or two.

New Treatment Verdict

So, nearly a week out from the start of the new regime of Taxotere, and its been... interesting.

I'm definitely suffering more with this treatment than the FEC, although in a very different way. On the up side - no nausea or sickness, which I consider to be a big bonus. The tiredness has been a little more extreme as well - this is the first day I'm not feeling exhausted, so I've bounced back much more slowly than on the previous drugs. Usually by the Friday after treatment, I'm feeling OK-ish, so it's taken an extra 3 days to return to relative normality. In fact, I felt better the day after than I did on Saturday (which was the worst day of all - I even stopped feeling guilty about people doing things for me - a sure sign that I'm poorly).

The main difference has been the pain however - one of the side effects of Taxotere is joint pain, and I have been suffering with it. It's not so bad that it's unbearable, but just enough to make it difficult to relax - and to fall asleep. I'm pretty much able to keep on top of it with a combination of paracetamol and ibuprofen. The wost pain is in the balls of my feet - they feel like they're badly bruised, so walking, especially first thing in the morning can be quite painful. I've also been getting a lot of tumour flare, which is a bit like being stabbed in the chest with needles every few minutes.

The overall effect again though, is much like you feel when you're coming down with the flu - just this lot I'm a bit closer to the flu than the last lot, and with aches and pains rather than sickliness. Another new aspect has been that my taste buds have gone into hibernation - nothing tastes of anything, with the exception of citrus and chocolate (that I have discovered so far). Chilli is a taste of the past, and salt is a foreign country - mostly everything tastes of cardboard, so most of food sensation comes from the texture. This is a standard side effect to the drugs I'm on, and can take some time to recover from even after the end of treatment - which for someone who loves good food, fills me with horror.

Part of the deal with the new drugs are 5 days of injections administered by a nurse who comes to my house, and from the discussions I had with the weekend cover nurse yesterday, part of their function as well as the injections is to keep an eye on my weight, as when people stop being able to taste food, they have a tendency to stop eating enough as well. It's really important for me to maintain a decent weight through the treatments (although I still despair that my clothes are getting a little snug), as I need a cushion in case I get sick.

In other news I went to see another surgeon this week, to discuss my options. He is based in Chelmsford near my parent's house, so logistically it may well be easier as I'll need a lot of care immediately after the op. Chelmsford also has one of the biggest and most well regarded plastic surgery units in Europe. My original understanding was that my only real option for reconstructive surgery would be to have a full implant, as I don't have enough fat on my stomach or back. However, the surgeon I went to see last week has been developing a new procedure to take fat from the inner thighs for reconstruction. I'm not sure how I feel about having a more major surgery than might be necessary, given the risks of nerve damage/scar tissue, but it's good to have more options than just one. I'm going to look further into it and weigh up the pros and cons, but I'm considered to be an ideal candidate for either procedure (i.e. there's not much they need to reconstruct).

An Interesting 24 Hours

So, its been a fun-filled 24 hours since my last post. First off, I got so annoyed with my hair falling out that I shaved it all off. It turned out that I had quite a lot of hair left, but in patches, so even though it's down to a grade 1, it looks somewhat patchy. Simon and little sis Kate both commented that it looks a bit like I have mange. So now the wig and the beanie hat are being used in earnest. My scalp is quite tender, so the wig is uncomfortable for long periods as I discovered today, but I'm hoping it'll get better.


Next up, first thing this morning we (Kate and I) were off to Wexham Park Hospital in Slough for an urgent blood test to see if my potassium levels were back to normal. We managed to get there by 20 past 9, but they was already a queue of about 30 people waiting for tests. However, because of the urgency of the results required, I was able to jump the queue, which was a relief - I get super paranoid about sitting in waiting rooms in case I pick up a bug.


Then it was back off to Windsor (via Simon's office for my parking pass and Wokingham for provisions) for my chemo appointment. The first piece of news was that my potassium levels were back to normal, so that once I'd seen the oncologist I was OK to go ahead with treatment. Once the usual vitals were recorded I went over to see Dr Adams, who was able to see me pretty quickly.

My MRI scan threw up some interesting results. While the lymph nodes have shrunk nicely, the breast tumour is not shrinking as much as they would like (although this may be a timing issue also - normal hormonal changes affect the appearance of the breast quite significantly, so this could be why it doesn't look as good as maybe it should). So we have a new plan - rather than having the last of my FEC treatments, I've been moved on to the doxetalal. This works in a very different way to the FEC, so hopefully there will be a better response to this treatment. I'll have 2 cycles of this and then a further MRI scan. Depending on the results of that we may then continue with 2 further chemos, or they may move up surgery.

So, while it's not good news, I'm not sure that it's bad news either (apparently it's not unusual, and the lymph node progress in many ways is more important), so it's just news. It also means that my timings will change somewhat - I'll now have a maximum of 7 chemos rather than 8. There is still no news on my general prognosis - this will have to wait until after surgery.

There was some debate over if I would be able to have treatment today, as their general procedure for the doextaxil is to give steroids the day before, but as the decision to switch was only taken this morning, that obviously wasn't possible, and they'd ordered the original set of drugs from the pharmacy. After a few phone calls it was decided that we could go ahead, but with a super steroid dose before the chemo drugs went in, but it would take a few hours to get the new drugs prepared.

So off Kate and I popped to eat our lunch, and then wandered into Windsor and did a little shopping before heading back in for treatment. My veins are getting increasingly difficult, it took the nurse 3 attempts (hand, wrist and finally elbow) to get the needle into a decent vein. It wasn't as painful as on the second treatment, but it was no fun at all. However, once we were in and going there were no further problems.

Hopefully there will be a better response to this treatment, and that the side-effects will be as minimal as with the FEC. One new thing is that I have to have 5 days of injections from this Friday to boost my immune system. These will be administered by a district nurse who will come over to my house to dose me up, which does tie me to the house somewhat. I will be going down to Essex still, as luckily my Mum's next door neighbours are a surgeon and a nurse. This treatment is worse for infection, so the injections are designed to boost white blood cells. It can also cause joint pain, so I'll need to keep on top of that with painkillers. On the plus side, it causes less nausea and less vein pain, so I;m hoping my veins will now recover.

Feeling pretty tired after all of that, so I'm looking forward to a restful week.

Almost halfway through

Hopefully, tomorrow will mark the halfway point in receiving my chemotherapy, and the last of the FEC treatments. I say hopefully - I received a phone call from the chemo nurses this afternoon to say that there is an issue with my potassium levels, and I need to go for some further blood tests. Likely that this is nothing to worry about - it can be caused by diet, or because the cancer cells are dying and transferring their potassium in my blood, although it can also be an indicator of kidney function problems. We shall see. My chemo appointment is due for 12pm, so if I can get the bloods done nice and early they'll be able to make a decision on the day.


Since my last update, I've been keeping myself busy, although arguably a little too busy. I've worked out that if I overdo it on one day, I need two full days of rest before I feel better again. I completed all the things on my first to do list, and have carried on trying to stay productive. I'm still making my own bread (which goes very nicely with the homemade jam), although I've given up kneading by hand, and transferred that job to the food mixer, which makes it much less tiring. I've also, 4 years after getting married, printed out some of our wedding photos and put them up in the house, along with some of our other pictures. Making progress on the house, and it's starting to look much more like home. My next task is to start sewing the curtains for the living room. Most of that is hand sewing, which is time consuming, but can be done at my own pace, which is good.

My parents came over to visit this week and helped out with the house updates, and, provided that I have my treatment tomorrow, I'll be going to Essex for a few days to recuperate.

My hair is now falling out in earnest - I doubt that it will last much longer than a week. In fact, given the amount I've lost already I'm amazed I have any hair left to speak of at all. Still, the wig is waiting and ready to go, so it's not too much of a bother for me, although the continuous shedding is annoying.

I should also get my second MRI results tomorrow, and with any luck that should give a better indication of my general prognosis. It seems that the tumour is shrinking, but it can be difficult to judge, so I'm looking forward to seeing the results.

Not Taking Things Lying Down

I had an interesting chat yesterday with Emma, who is the lovely lady who comes round to clean our house once a week. She reminded me that it's OK to admit you're having a bad day, and that not doing much is not a sign of failure. This got me thinking a lot.
Yes it is OK for me to have bad days where I do virtually nothing, yesterday was one of those days (where even the act of getting up and dressed was more effort than I could muster without having to lie down again). However, I find these days very frustrating, for 2 reasons.

1. (The psychological one) I'm quite sensitive to accusations of being lazy. My perception when I was growing up (which may or may not be accurate), was that people thought that I was lazy, so I've tried quite deliberately not to be, although I'm not sure I always succeed. I like to be doing things, and I feel guilty doing nothing. I feel bad that in the last few weeks I've not been doing anything "useful", I've not been able to continue working as much as I would have liked, and I've not been doing anything else particularly constructive either. I know that this is a bit silly, given my circumstances, but it's difficult to change your conditioning.

2. (The slightly darker, morbid one) I feel I should continue to be as active as possible, because, quite frankly these may be the best days left to me. I may not get better, I may get worse, and look back on these days of relative leisure and wish I had done more. It's not a thought that comes to the front of my mind very often, but it's there lurking in the background.

So, I am trying to stay active and do useful things, but I think I have to admit that not coming up to my fairly high standards is not the end of the world at the moment. I've decided to start writing little To Do lists, to cover stuff to do on a particular day, or in a particular week. I like lists, I love the feeling of crossing something off as done. I will (try) not (to) beat myself up over not completing everything. Some things will be simple, some thing will be fun, some things will, knowing me, be completely unachievable, but it will give me a feeling of purpose.

Today on my list I have:
Make plum jam
Make apple crumble
Write blog post
Research curtain fabric and shower screens

And I can almost cross off one already. My lists will often have food based items in them, as my brain files these as both useful and fun (and tasty, food is very important to me at the moment, even when I'm not feeling well).

Aside from my self-analysis, I'm feeling OK a week out from chemo number 3. Again more tired than rounds 2 or 1, and recovered from the sickness that afflicted me on the first day. My hair is still largely in place despite not using the cold cap, but I'm, expecting quite a lot will fall out before the next treatment (there seems to be a 3 week lag between treatment and shedding). Yesterday I was simply exhausted all day, but today I have woken up feeling much perkier.

Third Time's the Charm

Yesterday was Chemo number 3, which also involved a visit to the oncologist for the first time for a while.


In between last post and treatment I started to feel a little better as my ulcer finally healed. We also spent a nice relaxing weekend at my parent's house, had my bloods dine and made some nice bread. Making bread is surprisingly tiring I've discovered, but worth it.

My sister came up on Monday night so that she can keep me company over the next few days, and also brought some rather lovely Red Velvet Cupcakes. We're a bit of a baking family...

So, as for treatment #3, it started as always with taking my blood pressure and weighing me in the chemo suit. I'm managing to maintain a steady weight, which is good, although my blood pressure has been lower each time I've been in. Maybe it's because I'm less stressed over the treatments, but 94 over 48 is pretty low!

Next up was a trip back over to the Parapet to see Dr Adams, and thankfully I didn't have to wait too long. He went through the symptoms I've had over the treatments, and recommended an ibuprofen gel to help my vein pain. He also examined me - it seems that the lump under my arm has gone, and the lump in my breast appears softer, which is good news. He has requested another MRI scan for before my next treatment so that they can check the progress of the tumour - it also can see blood flow, so hopefully they'll be able to see a noticeable change to show that the chemo is working. I'll see him next time round as well for the results.

Then it was back to the chemo suite for the treatment. Simon and Kate were with me, but apparently I'm only allowed one person accompanying me, so Simon said he'd wait elsewhere and Kate stayed with me. I was quite worried that because my veins were still sore in my hand that it would be more painful than last time out. However, they put a warm heat pad on my hand to help bring up the veins, and used the other side of my hand to insert the cannula. It was still painful, but not as bad as last time round. I also kept the heat pad on my arm through the treatment to stop my veins from contracting, and extra saline was pumped though to try and preserve my veins as much as possible. I also decided against using the cold cap this time round, which means that the rest of my head hair is likely to fall out over the next few weeks. It was pretty uncomfortable last time round, and as I'm not too bothered about being bald, I decided it wasn't worth it. Other than that the treatment passed without incident, and we were all done my about half past one.

We headed into Windsor for lunch and a little shopping. We found a nice Thai place doing a 2 course lunch for £7, and had a little wander around town until I started getting tired. Unfortunatly, I'd forgooten to take my sterois with my meal, so took them when I got home, which may have contributed to how sick I felt once I woke up from my nap. I took some more anti sickness tablets, but they didnlt seem to have any effect. By 8:30 I was feeling really sick, despite 3 lots of anti-sickness tablets, and I soon found out why. I was pretty violently ill, and given that it appeared that I hadn't digested lunch, so its likely that the anti-sickness tablets weren't absorbed either. After that I felt abot better, but couldn't manage any dinner. I have some tablets that go under your lip rather than swallowing, so I took those just before I went to bed, and as such I managed to sleep through the night.

This morning, I'm feeling a lot better. I'm enjoying feeling less tired thanks to the steroids, and I feel a lot less sick than last night. I've even managd to have a little breakfast.

At home with Mrs Grumpypants

I've started writing several posts since my last one, but never finished them or got around to posting them. I've been a pretty grumpy Sarah for the last week or so - an epic combination of chemo tiredness, a massive mouth ulcer and PMS.

The tiredness has not been helped by the builders (we live on an under construction housing estate) who have come along to fix up all the pavements along the road outside my house. Which is great because the pavements were a mess, but it's bad because they start with the pneumatic drill and circular saw at 8:30 and finish about 5 - although the last few days they've packed up earlier. This doesn't make being in the house very restful, unless I close all the doors and windows and switch the TV up loud - which again is not very restful. I managed to have lie in this morning though, so I'm feeling a little less tired today.



The mouth ulcer has really been getting me down - it's a common side effect from the chemo, and I used to suffer from them a lot as a kid. This one is just inside my bottom lip and about half a centimetre across, it's been there about a week now and just won't heal - it's appearance coinciding nicely with the low point for my white blood cells. It hurts to eat and to talk and generally has made be very grumpy.

I've also been having some bad vein pain over the last week or so. It started out as a sore elbow (I thought I'd tweaked a ligament), but the pain began to spread all down my arm and up to my shoulder. It's apparently quite a common side effect of the chemo, and is another that can get progressivly worse over the course of treatments. It seems to be the Epirubicin that causes it (the same one that causes necrosis if it goes outside of the vein) - it may be that there wasn't enough saline going through at the same time it was being injected. Thankfully in the last day or so it has got a bit better - its still sore around my elbow and wrist  - as it hardens the veins I suppose it makes sense that it hurts more around the joints. I also got in trouble because I didn't ring the nurse as soon as I knew it was an issue - Simon had to keep pestering me to speak to them but I didn't want to bother the nurses with what might have been a stupid question. Simon quite rightly pointed out that they're there in part to answer the "stupid questions" to stop you worrying.

I have managed to do a few useful things though - in particular I've hired a cleaner to come once a week, which will help a lot. Also, the lady is lovely and very easy to chat to. I've been continuing to make bread and have baked some nice cakes as well. I had a visit a few days ago from my friend Sam, and we walked to the pub for lunch and generally had a good natter which helped to cheer me up. It surprises me how doing little things like that can tire me out though - yesterday I was pretty much wiped out and feeling very low. I'm feeling a bit cheerier today.

The Big Wig Debut

I seem to be pretty much over the worst of treatment number 2, and the overall verdict is that I felt less sick, but more tired. I cope better with tired than sickly, so I don't mind too much.

My hair has started to fall out more, and was becoming a pain, so on Thursday night I took the plunge and Simon and Mum helped me shave my hair off - not completely, just down to an inch or so, but it means I won't clog up drains everywhere I go. I can't say its the most flattering hair cut I've ever had, but it's serviceable. My hair defaults to vertical when short, so I look a bit like a fluffy hedgehog.

There was a leaving lunch for some guys at work on Friday, and I decided that I felt well enough to head into the office a bit to say hello and sort out a few admin bits. I decided to debut the wig to see how I got along with it, and found it quite comfortable. People didn't point and stare either, so I'll take that as a victory. I did feel slightly self-conscious at first, but got such a nice reception from people in the office that I quickly felt at ease and stopped worrying. I had a lot of comments to say that I looked well and had a very pleasant afternoon catching up and getting a few bits done. By the time I got home though, I was knackered and had to go to bed, but I was glad to get out and about.
It's one of those weird things when you're ill - you feel perfectly fine and well whilst your curled up on the sofa or in bed, and then as soon as you try and do anything, it hits you again. So you end up feeling lazy for not doing anything, but as soon as you do something you have to stop. The worst is when you get up and get ready, and simply the act of having a shower and getting dressed has tired you out so that you have to have another little lie down.

Round 2 Report

Second round of chemo is done, as my white blood cell test came back looking "very good". Appointment was at 9:15am, so with it being the first day back to school and a conference in the centre on Windsor, it was a bit of a slog getting to the hospital.

Still, I think everyone was running a bit late, so it didn't cause a problem. I sat myself down in one of the comfy chairs and started to adjust it, but got told off by one of the nurses, as the chair got tangled with the IV stand... After getting settled in, blood pressure taken, side effects from the last treatment noted and speaking to the pharmacist it was time for the needle to go in. My veins have never been particularly robust, and this time round it was much more difficult to get the cannula in, not helped by the fact that the newbie nurse was doing it. He's very nice, but not particularly skilled unfortunately. It was quite painful, I may have cried a little, but I'm good at that at the moment.

Still once it was in it was only a little bit sore, mostly when the cannula was inspected to change drugs, or check that it was still in the vein. Steroids went in without any problems though, and from the side effects they give you (one makes you a bit dizzy, the other gives you ants in your pants for a minute or so), it was obvious that the needle was in OK. It took a bit longer than last time to get all the drugs in, and as it was colder yesterday, the cold cap was more uncomfortable than last time. The drugs are also refrigerated before they go in so I ended up with a cold arm as well as a cold head - I was glad I'd brought a blanket with me.

I was all finished by about 12:30, and feeling OK, so Simon and I headed into Windsor to get some lunch and run a few errands. By the time we'd done this though, I was starting to feel a bit ill, so we headed home and I had a nice nap.

As the treatment was in the morning I was able to spread my drugs out well, so didn't feel as sick overnight as I did last time. Today I'm suffering a little with a headache, but I have the nausea under control. Again, I'll be taking it as it comes, but so far, I'm feeling no worse than last time out. I think keeping pretty active has helped, even if I did overdo it a little last week. I'm actually less tired than I was before the treatment, as the steroids boost your energy levels. I think I'll probably still treat myself to a nap later though.

Also, just a quick note to say thanks again to everyone who has sent me messages,I know I've been rubbish at replying, but it's been lovely to hear from so many people, it really does cheer me up. I've also opened up the comments on here - the default was set to people with Gmail IDs, but they're now open to anyone.

Getting ready for treatment #2

Chemo #2 is scheduled for 09:15 tomorrow, assuming that the blood tests I've just had show that I have recovered enough white blood cells and that my liver isn't failing. I'm hoping that the side effects are no worse than last time, but that may well be a vain hope.

Generally, I've been feeling pretty well the last week or so, although I get very tired. I had a busy few days last week - my friend David came over on Thursday and we went to Wisley gardens. We took a picnic and must have walked miles, but it was lovely to be outside in the sunshine. On Friday I met up with my bosses from work for lunch and caught up on the latest office intrigue, and on Saturday my sister-in-law and her fiancée came to visit and we went for a walk in Windsor Great Park (nice enough but noisy from the planes) and cooked dinner  - Simon was in charge of the main course, I looked after dessert. I've also started making my own bread, which is going surprisingly well, and doing some studying.

Yesterday I mostly spent asleep, as the previous 3 days had pretty much exhausted me.

In other news, my hair has begun to fall out. Body hair started first, but now the head hair is staring to fall out as well - not much so far, and you can't tell by looking, but it's definitely started. With the cold cap, it may not all go, but depending on how much comes out at some point I'll bit the bullet and shave what's left off.

In Support of Breast Cancer Awareness

A few weeks ago I received a message in my Facebook inbox asking me to help raise awareness for breast cancer. This was a few days after my diagnosis, so I was feeling pretty raw at the time and did nor respond, but now I feel I must, but it made me angry. This is probably not the most coherant argument against these things you'll find on the internet, but I need to get it off my chest, so to speak.

Most of the ladies I know will have received something the same or similar in their email inboxes, maybe the gentlemen have too, I don't know. You see similar stuff happening on twitter - make #xyz trend to raise money for something or other. My immediate question to all of these has been: How? How will retweeting a hashtag raise money? How will posting an iniane status, designed to "confuse the men" (really?!?) will raise awareness of breast cancer.

Most people are pretty aware of breast cancer. I don't think people need to be made aware of something that affects 1 in 8 women in the UK.
The key about breast cancer awareness is being able to notice something abnormal in your breast and going to see your doctor about it straight away. The being able to notice is especially key. Since my mothers cancer diagnosis 3 years ago, I've been pretty vigilant about checking my breast for abnormalities. The problem is that I didn't know what I was looking for, and so when I found the lump it was already 3cm across - I'm only a B cup, so that's a pretty significant chunk of volume. I was checking, but I didn't find. It may have cost me my life - I don't want it to cost any one elses.  My cancer has (it appears) only just switched from pre-cancer to cancer. If I'd've found my lump 6 months ago, I might have saved myself chemotherapy, and given myself a much better prognosis. Hopefully I have found it soon enough - only time will tell.

A secondary point about "confusing the blokes" - men need to be just as aware as women - they may notice a change in their partners breast as well - after all they spend more time with them, and may have more points of reference to refer back to, so guys you need to be aware as well.

So, to all my friends I say this: instead of posting an inane status on facebook or retweeting something usless, post this instead:
http://www.breastcancercare.org.uk/breast-cancer-breast-health/breast-awareness/
Also, click on the link, read it, watch the video and check yourselves or your partner. You never know, you might save someone's life.

If you feel passionatly about something, do something useful - sprea information rather than mis-information or donate rather than posture.

Thanks for your time, and sorry if it sounds like a rant - I've tried to restrain myself ;).

9 days Out

I've been at my parents house since the weekend, suffering from a lack of laptop and a flaky interweb connection. Still it's given me the chance to relax and become almost surgically attached to my Kindle (started reading A Song of Ice and Fire series following watching the first 2 episodes of Game of Thrones - I'm still two episodes into the series, but halfway through the second book. If any one has any good book recommendations let me know).

Physically I feel pretty good, the sickness feeling has past as have most of the headaches (although they were mild). I'm feeling tired though, but I am sleeping quite well - some days I have a nap but most days I resist. Technically however, the next few days I'm the most ill - it kills white blood cells as well as cancer cells, and statistically the next few days my immune system is at it's weakest point  it takes about 10 days for the white blood cells to die off as they're not being replaced by my bone marrow at the moment  as I understand it. The bone marrow should start to recover over the next few days and then the white blood cells will come flooding back - which needs to be tested before I can have my second dose of chemo. Emotionally I'm feeling a little strung out and delicate, but I suppose that's to be expected. I think I'm mourning for my youth.

My hair is not yet falling out, but this usually starts happening about 2-3 weeks, or sometimes longer after treatment.

I came back home last night with my Mum (Simon joined us in Essex for the weekend, but then had to go back to work) and today I'm off to hospital for another test. When they did the chest CT a few weeks back, it was noticed that there was some sort of abnormality on my ovaries. This is almost certainly due to an abnormality I am already aware of - I have PCOS - which is mostly harmless, but they don't want to take any chances and give the ovaries a good going over with the ultrasound to make sure there's nothing new and sinister going on there. I've had this done before, and its a fun test - they use your bladder a bit like a lens, so you have to drink 2 pints of water before you go in and not go to the loo. They then press the ultrasound wand into your belly for what seems like an eternity. Still compared to some of the tests I've had done to me recently, it should be a walk in the park.

I was also planning to get out in the garden and do some weeding to get a little exercise, but sadly today the good weather is broken and it is properly pissing it down outside. Maybe I'll wander up and down the stairs a bit instead - living in a 3 storey house is good for the heart. I'm considering taking up yoga - to do at home rather than a class to give me a little exercise and maybe a little inner peace.

So Far, So Good

Nearly 48 hours in from my first lot of treatments, and I'm feeling pretty good. Yes, I'm quite nauseous, and tired, but nothing like as much as I was expecting - more like a general feeling of being a bit under the weather, rather than being all out ill. This bodes well as the reaction to the treatments is usually cumulative

I'm managing to keep the nausea largely under control at the moment with the drugs they've given me. I'm starting to come off the stronger ones though, so we'll see how I carry on. The worst reaction so far is to chilli - apparently my stomach lining doesn't like it any more. I think this is a side effect of the steroids though, which I only take for the first 4 days after treatment, so hopefully my stomach will recover towards the end of the cycles. It's mainly a problem because I'd estimate that 2/3 dishes that Simon and I cook regularly contain chilli.

Simon is able to work from home as required during treatment. He stayed at home yesterday but has gone back into the office today. It's great that he's able to be flexible. We managed a walk, but mostly I played computer games whilst he worked. I was hoping to do some work in the garden today, but its raining, and I am a fair weather gardener - at least at the moment, I think it's only fair!

One Down...

First chemo session done. Nothing unexpected happened and I'm still feeling pretty OK - a little nauseous and a bit of a headache, but other than that I feel pretty good so far. I understand however that the drugs can take a few days to really hit you, so I'll just see how it goes from now.

I was booked in for 2pm, and we arrived a little early. I didn't need to see the doctor before the session, so that sped things up somewhat. First things first the chemo nurse took me through exactly what she'd be doing for this an further sessions. I'm pretty sure that part of the requirements for working anywhere near cancer patients is to be super nice.

She took my blood pressure (which was low, so I wasn't as stressed as I felt maybe), and then put a cannula in my had to administer the drugs. Saline goes in first to make certain they've hit the vein. If one of the drugs hits outside the vein it can kill the cells it touches - so they're constantly checking to make sure its in the vein correctly, and then that it hasn't shifted. I was given an anti sickness steroid to start with - which she warned me gave you a feeling like having ants in your pants. She was right - a very odd sensation, but thankfully it passed quickly. It also made me very dizzy - but again that's a common reaction.

I had the cold cap fitted to try and prevent hair loss, and it wasn't as uncomfortable as I'd worried about. In fact, given that the room was quite warm, it was almost pleasant. The hat has to go on 20 minutes before they administer the first chemo drug - which is also the one that causes the hair loss and the cell death (its a lovely substance). This has to be administered manually by the chemo nurse rather than through the drip because it's so dangerous - it gets mixed in with saline and slowly pumped in. I remember this one from my Mum's treatment - it's bright red. You don't really feel much as it goes in, just a coldness and slight tightness in your veins -- the drugs are refrigerated before going in so they're quite chilly, and this causes the veins to constrict. After that the drip was hooked up to two further drugs, each of which took about 15 minutes to infuse.

The cold cap gets replaces every once in a while - they're just cold packs fitted into a helmet shape - so quite a cunning solution, but they melt so have to be redone. I looked like a jockey apparently. I didn't let Simon take a photo.

The pharmacist came round as well and explained the drugs they give me for after the session. I have some steroids and other anti-sickness drugs to take over the next few days, and then some other anti sickness medicines to take after that if I need them. I also have a mouthwash to try and prevent mouth ulcers, as these are a common side effect, and I've suffered from them a lot in the past.

So I was in and out of the hospital in just over 2 hours, which isn't bad, and we now get free parking there, which is a small bonus. Got home and had a nice cup of tea and a relaxing read on the sofa. Simon and I have just been out for a short walk as well, which did make me feel a bit better, although it has made me feel distinctly warm - not helped by the fact that I've now got the laptop on me.

Physically so far so good. Mentally - I'm feeling a little delicate but it hasn't hit me like a tonne of brikes like I thought it would - at least not yet. I was pretty nervous before they started putting the drugs in but the nurses put me at ease. In both cases it's now just one step at a time. I am however very glad that I've now taken the first step.

The Calm Before the Storm

So here we are, my first chemo session starts in a few hours time. I'm both scared and looking forward to it, it will be nice to feel like I'm doing something towards getting better - even though I know it will make me feel worse. It's quite an odd feeling.


Bone scan last week went well - I won't get the results from that for probably another few days, but to a geek like me was a fascinating experience. First you're injected with a radioactive isotope (gamma ray emitter), you wait 3 hours (I went shopping as it was done at the hospital in the centre of Reading - bought myself a Kindle, which I'm already inseparable from). Then you go back and lie under a detector that picks up (and polarises using a lead mesh) the gamma rays, and counts how many are detected. In a similar way to X-Rays, the isotope is absorbed more or less by certain types of tissue - more by bone than flesh, and most of all by cancer cells. So they're looking for hot spots of gamma decay. It also gives you a semi live picture of your whole skeleton, which is very cool.


I've not been sleeping too well of late, but I did get a decent nights sleep last night thanks to having spent the day in London. The standard process for getting a wig through my hospital trust is overly complicated, so I decided to cut out the middleman and head to the supplier directly (sadly no cost reduction was forthcoming however). That meant a trip to Paddington, and I was accompanied by my good friend Haydn, who had the good grace to only laugh at me in one of the wigs I tried on. I've got a picture of me in a long wig - but not the one I chose. If I can figure out how, I'll post it up here.

The wig I've chosen is short and dark, and looks like one of the many haircuts I've had in the past. And unlike some others I tried on it didn't itch too much.

I also headed over to Covent Garden to meet another old friend, so all in all it was a good day. Especially as I had 2 ice creams bought for me ;).

5 days to go

The call from the chemotherapy suite came earlier than expected - I had a call this morning to confirm that I'll be starting my treatment on the 16th August - next Tuesday. So I have 5 more days of relative normality left. My last treatment will be (if everything goes according to plan) on the 10th Jan - 3 days before my birthday.

As far as I can tell, I should start to start feeling pretty normal again 2 weeks after that, so I should have another month of normality in Feb, depending on when the surgery is scheduled.

Before Tuesday I'll be going for my bone scan, Friday I'll be at work, on Saterday I'm going to Castle Coombe to watch some racing with some friends, and to a ball. Sunday is looking like a free day, and on Monday I'm planning on heading into London to find myself a wig. Anyone want to join me?

The worst is the waiting

Back to the Parapet (Windsor Breast Care Clinic) today. Appointment was written on the card as 11am. Now I've started to get used to the concept of NHS time, which is apparently set up entirely differently from time in the rest of the observable universe, so I wasn't expecting to be seen at 11. I can understand why time drifts so much there, especially as the people I'm waiting to see are the principle deliverers of bad news to patients, so I can't complain about the wait - I totally understand why the delays happen, and the service received so far has been awesome. When there's an emergency, the NHS really do pull their socks up.

I can however complain about the chairs in the waiting room. I was waiting with my Mum, who unlike me has some serious back pain issues (and I mean serious). After 2 hours in the chairs my back was hurting. The chairs are evil. Maybe I can try and raise some money for better ones... hmm something to think about.

Anyway, at 1pm I was lead in to see the surgeon. The second lot of biopsies have found some invasive cancer cells - not many, but they are there in the samples, so no need for any more stabbings. The results are quite odd, but positive, it seems like I have quite a lot of pre cancerous cells and very few invasive cancer cells (based on what they have seen so far, until I have surgery, this is all best guess stuff), in small little pockets, so it seems slightly odd that it's reached my lymph nodes, but there you go. The cancer cells have been given as Grade 2 (out of 3, 1 being, mostly normal, slow growing, 2 is moderately weird, medium growth rate, 3 is very different to normal cells, fast growing) In a way its a good job that they found the cancer cells in the lymph nodes first otherwise I may have been treated as if I had a pre-cancerous condition, which could have lead to delays and additional surgeries. She had also received some further blood results from me that show that I don't have any ovarian or liver tumour markers (v good news). Also my breast cancer markers came up as normal - which may seem odd, but these don't deviate from normal unless there is 'a lot' of disease. So generally positive news, or at least, no more bad news.

A further hours wait (on slightly less uncomfortable chairs) before I met the oncologist, a nice chap called Dr Adams. He took me through the specifics of my chemo treatment, and took a general medical history (mostly PCOS, dodgy tummy, no gallbladder). So madame will be treated to 4 courses of FEC followed by 4 delicious courses of T (mmm tea). FEC seems to be the standard breast cancer chemo (5 Flourouracil, epirubicin and cyclophosphamide), and is what my Mum has 6 courses of. Standard symptoms: nausea, hair loss, itchy eyes, tiredness, dry skin and almost complete suppression of the immune system.
T (taxotere aka docetaxel) is a newer treatment, and often used for younger patients, as it delays any recurrence of cancer if there is going to be recurrence. So if I do get cancer again, it would likely be longer before it happened, hence why younger patients get it. It also works in a different way to the other drugs, so its a good belt and braces measure in case the FEC doesn't work so well. The side effects for this one are: more profound hair loss (e.g. you don't always lose your eyebrows with FEC, but are almost certain to with T), more fatigue, and more suppression of immune system but on the plus side, less nausea. It also causes weight gain and bloatiness, but this usually reverses at the end of treatment.

I don't yet know however, when this treatment will begin, but I should find out at the end of the week.

I can wear a cold cap to try and prevent hair loss, which I've agreed to try for the first few sessions, but it's not really something I'm that bothered about. Of more concern is the lack of immune system, so no visitors with colds allowed. Having said that, the oncologist recommended keeping as normal a life as possible - so I shouldn't stop going out shopping or to the theatre - but just take sensible measures to avoid coming into contact with infection. Also taking regular moderate exercise tends to alleviate symptoms and reduce the occurrence of infection. I've always planned to try and keep as active as possible during the treatment, but it's always nice to know that it's recommended. I went into the office yesterday, and will probably go back in another few days this week (although I'm having my bone scan on Thursday). It's nice to be around people and get out of the house, even if I'm not able to be super productive. I've also got a few projects I can dip in and out of through the treatment to keep my mind active as well. I'm hoping I don't get too bad a case of chemo-fog (my Mum described it during her treatment as 'a bit like having your.... you know...erm...brain...fall out of your ears' - it has since been recovered).

I then went and sat with Anne-Marie, my breast care nurse for a while, who was the one who talked me into trying the cold cap. She also went through the procedure for getting a wig (which seems overly complicated - NHS may be good at cancer, but they're still shit at procurement) and my Prescription Exemption Certificate - thanks to Gordon Brown, I get all my prescriptions free for the next 5 years, which is good. She also took me to see the chemo suite at the hospital, which was small, but similar to the suite I went to with my Mum (comfy chairs, pillows, lots of windows, flowers).

By the time we left it was 3pm. I hadn't had any breakfast. I need to keep a supply of food in my handbag from now on, just in case. We collected my Dad, who'd been planning of visiting his car nearby (the Cobra is poorly :( ), but ended up instead driving around Windsor. Dad judgement: more like Slough than what you'd expect of Windsor. Maybe he saw the wrong bits - I don't know, I've only ever driven though or been to the hospital. The bits around ythe castle (where we adjourned for lunch) were nice though. We bought fudge, which I then left in my Mums car, and they then went home - fail.

What I know, What I don't know

It's been a fairly quiet week since the last trip to the hospital on Tuesday. Did a bit of shopping, went to the cinema and out for lunch. It's been quite relaxing, although I've had a lot more pain from this biopsy round than the first.

I've been pondering on what I know/ don't know so far, trying to organise my thoughts

What I know (although some of these are probably rather than knowns):

• I have an invasive cancer in my breast which has spread to my lymph nodes, but it seems no further.
• I will be having 8 sessions of chemo, 3 weeks apart, most likely starting a week next Tuesday. That's 6 months of treatment. So most likely I'll be done with the chemo by next March (Some sessions may be 4 weeks apart depending on how well I recover between them.
• After chemo I will have surgery - a mastectomy and lymph node clearance. They may or may not be able to do reconstruction at the same time.
• I will never have kids. I never wanted children, but it still sucks that the decision has been taken away from me. I could have IVF treatment to store eggs, but this is complicated., takes time and involves a lot of hormones, which could accelerate development of the tumour.
• I'm stronger than I thought I was. Although its been a big shock and mentally I'm struggling from time to time, I'm coping much better than I thought I would.
• I can't get a cat during my treatment, much to Simon's relief, and the dissapointment of my sister.
• My hair is going to fall out. I'm going to get some awesome wigs.
• I cope better when I have company. My coping mechanism largely revolves around humour, so with no one to laugh at my 'jokes' I struggle more.
• And, most importantly of all, I have awesome friends - the messages I've received from people, some who I've not seen for years, have really boosted me. Sorry that I've not been responding very much, but I do really, really appreciate the thoughts coming my way. Thank you.

What I don't know

• What type of breast cancer I have - the latest biopsies may give more information, but I may not know more until the whole lot is removed and looked at. This will have a bearing on my mid-long term prognosis.
• What my odds of disease free recovery are.
• How long it will be before I'm back to 'normal'. I'm getting closer to knowing as best as possible, but these things are variable.
• How I will cope with chemo. Reports I've had are mixed, some sail through, some people are wiped out completely, some people find they get easier, some that they get worse as you go through. The general consensus seems to be that you get 10 bad days and 10 good days between treatments.
• What caused it. This I will almost certainly never know, and that annoys me.

Next up is the visit to the oncologist next week, where I should get the results of the second round of stabbings. I should get a chometherapy schedule and the date of my first treatment.

A Scanner Darkly

Yesterday, the chaos following diagnosis began, but thanks to some good results, seems to have paused for a week...

Simon and I deceided to take a weekend away, as it may well have been our last weekend of relative normality for a good while. Destination was The Vineyard at Stockcross, which is a 5* hotel which just happens to have a 2 Michelin Star restaurant attached to it. It also has a wine list printed on A4 paper nearly an inch thick. The sommeliers are however, more than happy to provide recomendations for those without an encylopedic knowledge of wine. We ate and drank very well.

It was off to the hospital bright and early yesterday morning for the first round of scans - MRI and CT. My sister Kate was able to join me for these, and will be staying with us for the next few days to help me keep sane. If anyone know much about the relationship between me and my sister, you might think that this would be an oxymoron, but so far I haven't had the urge to kill her ;).


MRI was first up, and I had a cannula inserted into my arm, as for both tests they need to inject you with a contrast agent to help show up what they're looking for. In the case of the MRI they were looking for the extent of the tumour and the blood supply to it. Thankfully, given that I get slightly claustrophobic I was to go in the machine face down and feet first. The table I had to lie on made me feel very dignified - like a masseuse table, but instead of a hole for your head, two holes to put your boobs in. It wasn't too uncomfortable however, and I brought a Tim Minchin CD to listen to during the test, as it was 30 minutes long. Aside from the weird noises and the fact that my forehead went numb (you have to stay as still as possible though the test), it was actually rather relaxing.

As they pull you out of the machine and unplug your headphones, the music starts piping into the room. So as I was getting up and making myself decent again, the song Fuck I Love Boobs came on over the stereo. Thankfully not too loudly, but it did give me an attack of the giggles. Tim for the win.

CT scan was up next where I had to drink a litre of another contrast agent within an hour. It didn't taste too bad - although given that the flavour was aniseed, not everyone would agree. Given my previous studies, I knew what to expect from the MRI scan, but I wasn't sure what to expect from the CT scanner. It turned out to look like a truncated MRI scanner, so just a short torus. And so for my scan I was passed through the hole of a donut while being injected with a liquid that makes you feel like you've wet yourself. Glad that they warned me about that beforehand.

By 1pm I was finished with my scans, but the blood lab was closed for lunch, so Kate treated me to lunch at Cafe Rouge, and we did a bit of food shopping before heading back to the hospital for my blood tests.

Given that I had my bloods taken at 3pm yesterday, I was happily surprised to discover that the breast clinic had received them in time for my 10am appointment (actual time 11:30). I'm pleased to report that my blood tests came back looking normal (no raised tumour indicators, inflammatory markers, liver function etc), which along with the CT scan showing nothing abnormal indicates that its unlikely that the cancer has spread beyond my lymph nodes, which is excellent news. Just the bone scan which I'm waiting to be booked in for to go, but given the results so far, it looks like (relatively) good news.

I did have to have some further biopsies - on the lymph node and on the breast lump. The lymph node one was done under ultrasound, and wasn't too bad. They gave me extra anaesthetic to try and counter the fact that it usually runs out quickly for me. This time, the feeling came back part way through the second core sample being taken. I think that the nurses realised at this point that when I say I run through anaesthetic quickly, I'm not making it up.

Unfortunately this didn't really help me for the second lot of biopsies, which were done under mammogram (so as well as being harpooned with a big needle, you're being squashed into the imager). By the time that they were able to get the needle positioned for the biopsy the numbness was wearing (or in one case completely worn off). The plan was to take 7 samples. In the end, they only needed to take 4, as they were able to confirm that they had got the samples they needed quickly (they were specifically looking to get samples of the calcification in the lump - which can be where the primary cancer is located, but also generally will give more information on the type of cancer). I honestly have never experienced anything so painful before. I suppose that as the intention is to drag small lumps of flesh out of you, its not surprising. Hopefully I won't need any further biopsies, but I am likely to have to go through similar procedures. I'm hoping that there are alternative local anaesthetics available otherwise, unless they knock me out, its not likely to be painless.

Still, over all, today has brought good news, so I can't complain too much. And the staff looking after me were very kind and understanding and continually apologising for my pain, although it wasn't their fault.

Diagnosis

There was just over a week between my initial appointment at the cancer care clinic and the follow up to receive the results of the biopsies. It was a tough week. I found myself not able to think straight or concentrate and found myself crying at the slightest thing.

Immediately after the initial appointment I came home with Simon and my Mum. I took some codeine for the pain following the biopsy, which turned out to be a big mistake, as it doesn't always react well with my stomach. So it made me quite ill, and then I went into shock. Which was fun.

I mostly stayed in the house for that week, but we went to stay with my parents for the weekend, and my Mum returned with us on the Sunday night to keep me company until the appointment came around. She kept me sane during the last few days, which were the worst, and also meant that she could come to the follow up appointment as well.

So, the diagnosis.

My appointment was for 10am on Wednesday. That's 10am in NHS time, so I actually saw the doctor around 11. The first thing I noticed when I booked into the appointment was that my files were now in a pink folder, rather than a clear folder that they were in the previous week. I was also put into a different queue than some of the other people coming into the clinic. I guessed correctly that this did not bode well. Panic began to set in.

One of the nurses came over just before 11, and asked me to go with her. She explained that I would be seeing a different doctor from last week, who I happened to know (having done some research beforehand) was one of the surgeons. Again, not a great sign. We waited (Simon, Mum and I) in a different little waiting area to be called through. When we were, it was the breast care nurse who called us in, and in addition to her and the surgeon (also a lady), there was another nurse.

My surgeon, Ms Predolac, sat me down, looked me straight in the eye, and immediately told me that "it's not good news". Although they had only found pre-cancerous cells in the breast lump, the biopsy of the lymph nodes showed fully cancerous cells. This means that there are fully cancerous cells in the breast tumour, but they haven't been found yet. As such, although she could tell me that the cancer is invasive, without further tests, she was not able to give me much further information about type/prognosis etc. However, given the results so far, my most likely course of treatment will be chemotherapy, followed by surgery (mastectomy + lymph node clearance), followed by radiotherapy - so I get the full house of treatments.

(If there is no cancer in the lymph nodes, chemo is not necessary. Chemo usually comes after surgery if they are not sure if the lymph nodes are affected, but as they know with me, it is best to start with the chemo straight away to catch any pesky cancer cells that may have spread anywhere else.)

I like my surgeon, she is very straightforward and explains things precisely, clearly and without talking down to you. I think I took the news quite well, considering. She explained that I'll need some further tests - specifically an MRI scan, CT scan, bone scan and blood tests, which will be able to tell them more about the cancer, and will help to determine exactly what my treatment will be. She then examined me, and the three of us were taken into a little sitting room to digest the news, accompanied by the breast care nurse.

Unsurprisingly, it was a lot to take in, and it's at this point that I broke down in tears. Simon went into shock and my Mum's face was grey. I think that experiencing their reaction was actually more upsetting to me than the diagnosis itself. A lot of people say after a diagnosis like this, that they knew already that it was going to be bad news. I didn't, it was a big shock, but one I'd also had the two weeks since finding the lump to start to digest as a possibility, so it wasn't as big a shock as it might have been.

Anne-Marie the breast care nurse was truly lovely. She set up all my appointments and gave us some information leaflets and generally was just there for all of us. She'll be my nurse through the whole process and I'm glad. I'm also happy with my surgeon, either she understands how different people work and take in information, or she happened to deliver the information I needed in the manner I happen to respond best to (facts and data).

I'm devastated by the diagnosis, and frustrated that I don't have all the information yet. I think weirdly though that it is easier for it to be happening to me than happening to someone else I love. It's something other people have said to me as well, and having also watched Mum go through this it seems to bear out. I can rationalise something happening to me better than I can when it's someone else, there are fewer unknowns for a start - I know how I'm feeling for a start. The very worst point of a very difficult day was when I was sat next to my Mum as she rang and told my Dad. I was close enough that I could hear his heart breaking over the phone.

Pre - Diagnosis

So. Two days ago I was diagnosed with invasive breast cancer. That means that is has escaped the tumour in the breast and has traveled into my lymph nodes. Hopefully it has gone no further. I am just 30 years old.

I've decided to write this blog to help me process what is happening to me. I am not a good writer (so apologies if this looks like a stream of consciousness - it is), but I find writing things therapeutic. I also know that people will be curious about what I'm going through, but may not not feel comfortable asking, so it may kill 2 birds with one stone.

This is what happened in the lead up to my diagnosis...

I found the lump on a Saturday morning a few weeks ago. I was a little worried, as my mother has recently recovered from breast cancer, but assumed that it would be benign. But I did the responsible thing and went to see my GP (after finding a GP, having only moved into our new house a few months ago), she gave me an urgent referral to the Breast Care unit at a hospital in Windsor. The urgency of the appointment was due to family history rather than anything particularly worrisome about the lump.

The appointment came around within a week, and I went along for tests etc with Simon  (my husband) and my Mum. The first test is to ultrasound the lump - this rules out cysts, which are harmless and can be treated on the spot. I had assumed that this is what the lump was, as they are quite common. So the first sign that things were perhaps not going to go well was the diagnosis of a lump rather than a cyst. I spoke to the consultant, who said that given my age it was most likely something benign, and he examined me - which is when the lump under my arm was found. I'd found this lump earlier, but as I couldn't always find it, I thought that it was probably my bleak imagination going into overdrive. But no, it was real, it just moves around a lot.

I don't really remember much about the chat with the consultant other than getting really annoyed that he kept talking to my mother rather than me (more used to talking to middle aged ladies, I assume), and that I wasn't sure if he was giving me good news or bad...

Next step was the mammogram, which was an odd experience. It was once described to me as like taking your breast and slamming in the fridge door, and I think that's a good summation of what its like. Not really painful, but no fun at all either.

Finally on the initial visit was the biopsy. If you go to get a lump checked out and it's not a cyst, most likely you will end up having a needle core biopsy, which is done with the aid of ultrasound. The word core here is more important than the word needle - its more of a tube with a pointy bit. Thankfully this is done under local anaesthetic. It's also quite interesting as you can watch what they're doing on the ultrasound screen. However, I process anaesthetic quickly, so while at first I couldn't feel a thing, the second pass was painful. A bit like having your boob harpooned. They gave me more anaesthetic and took a further 2 samples.

The worst bit of the whole experience was  the biopsy of the lump under my arm. It was decided not to do this with local anaesthetic, as its "just a needle prick". My arse it was. My underarm felt like it was being plungered by an angry wasp. No fun.

The breast care nurse came to speak to me after I'd spoken to the consultant. The lump was given a score of 3-4 out of 5 (5 meaning looks like cancer, 1 meaning definitely doesn't look like cancer). 3-4 is borderline - i.e. think its probably OK, but need to look closer. Anne-Marie is my care nurse and she is lovely. I was feeling a bit freaked out and upset by this point, and she managed to calm me down without giving the impression that there was nothing to worry about. At this point, everything is based around likelihoods and statistics, so the advice was "try not to worry, it's most likely benign, but if not we have great treatment options". Until the biopsy results are in, there is not really much more that can be said.

I was given an appointment for the following week, when the biopsy results would be ready, and after the weekly meeting at the clinic where all the results are discussed. I went away feeling very nervous, but pragmatic, and it was at this point I decided I had to tell my bosses what was happening. Up until this point I hadn't said anything to anyone other than my direct family and my lovely friend Rachael. Thankfully my boss is incredibly understanding, and told me not to worry about work and to work from home (as much as I felt able) until I got my results.