Saturday, October 31, 2009

Anyone for a jog?

OK, you may not believe this, but I have felt like I could happily go for a run today. I am sure it won't last, but I am enjoying it while I can!!

Chemo yesterday was fine. It took a while to do, but the majority of that was hanging around waiting for the nurses to get themselves sorted out - from canula going into my hand (they were a lot more gentle with that than anaesthetists ever have been!!) to the last of the 3 drugs (FEC - 5Fluorouracil, Epirubicin and Cyclophosphamide) being pushed through it (a nurse uses giant syringes to do this, along with a drip which helps dilute it), probably only took 30-45 minutes. I did feel some immediate side effects: cold arm from the cold fluids going up it (they popped a heated pad on my arm to help, which it did); a tingly nose and a fuzzy head from another one, which didn't last very long at all; and red pee from one which goes in a red colour. That only lasted for the rest of the day.

After the chemo was delivered, I then met with a 3rd year Medical Student (Sophie - hiya, if you're reading!!) who needs to follow me for 6 months to get the patients side of what it is like being a chemotherapy patient. She'll have to write up a report at the end. We chatted for a while about what had happened to me so far, and how I felt about it, and we'll meet again at future chemo sessions so she can see how things develop. She was very sweet and polite, but I'd like to let her know that a bottle of wine is probably 9-10 units, and not approx.6 which is what we guessed at! Whoops!!).

After Sophie, I grabbed Michelle, the Breast Cancer Nurse, and she fitted me for my proper breast prosthesis. I have been given a fairly full C cup to match my other boob, and it does look better than the smaller 'softee' I had before. As long as I wear high enough tops, only an expert would be able to spot it! Michelle confessed she 'boob spots' everywhere she goes and can tell which ones have had surgery - but in her line of work, no wonder!

While I was doing all of this G had been sent away, so he took the Freelander and its sat nav for a drive around the Brecons, and then went to the camping shop at Raglan to buy fire-making equipment! He's such a boy! He noticed that garden centre (by the camping shop) had a nice cafe, so we went back there for lunch and I ate tons. We then had KFC for dinner. Oops!!!! I have eaten a little better today (except for snacking on the chocolates that the trick or treaters didn't eat!!).

Yesterday, after the chemo, I had a little sleep in the afternoon, but not sure if that was more caused by lack of sleep and anxiety the night before rather than the chemo, although I did also have a nasty taste in my mouth which seems to have gone now.

Had some trouble getting to sleep last night too, and woke reasonably early (6.30am? on a weekend!) and I think this is the steroids (dexamethasone)taking effect - oh, and impatience because I was waiting for a new laptop to be delivered - I ordered one this week, since my Mac died a few months ago and I want one I can link in to work from in case I work from home a lot more over the next few weeks. The steroids are probably also to blame for me feeling very awake and active. I have cleaned the house today (and will have to hoover downstairs again tomorrow seeings as G has managed to walk mud in everywhere already!! Grrrr) and went out for a quick drink with G and his mates tonight before leaving them to it (I'd only cramp their style!).

I have posted on an online forum asking about my good reaction to the chemo and I think it is more common than you realise, caused by the steroids (I have been given 5 days worth, marvellous!!). But I will probably fall on Monday or just after....if I do at all. Apparently, I have been given a good quality anti-sickness tablet too (ondansetron), which I had yesterday and today, and I have another milder one for the rest of the week if I need it.

Hair loss is likely to start in about 2 weeks time (so, today is day 2 and we expect loss around day 14), but here is a photo of my wig, and one of me today, so you can compare!!
Wig, all ready to go:

Me, today:

So, so far, so good. I am amazed.

I have also discovered that the pain down the inside of my arm, making it difficult to straighten my elbow, is more than likely cording. This is caused when the lymph nodes are removed. I have been gently stretching it (holding it at various stretches while sitting in front of the telly!) and this seems to be helping. Apparently, that is the advised treatment anyway, unless it is really bad in which case massage, and 'popping' the cord might be in order! Gulp! That 'popping' thing sounds painful, so we'll try and avoid that! I am definitely getting a bit better movement every day, so I will keep it up.

On a separate note, I listen to Radio 1 in the mornings and Carrie, the sports news reader announced she was pregnant this week, after having had a few months of scares. I just don't understand the reaction of some women who have miscarried, who are jealous of those who are pregnant. I know it is sometimes only a phase they go through from grief of their own loss, but I am just so, so happy when others manage to have a successful pregnancy. I had a few tears in my eyes of happiness for Carrie (if you think I'm soppy, if you're a regular listener, you do get quite involved in the 'teams' lives!!).

Right, off to see if I can find anything interesting on the web or TV while I wait for a call from G to go and fetch him from his night out in Ross-on-Wye. I am still wide awake and it is now 11.17pm. Love to you all xxxx

Tuesday, October 27, 2009

Chemo #1 (and off-roading!)

OK, a new entry to cover whatever is going to happen with my first chemotherapy treatment, scheduled for this friday.

I have been to the clinic today, as they like to see you on the Tuesday to check blood and general health before the chemo is given on a Friday clinic. I also haven't seen them for a while, and wanted to know about my CT and bone scans.

The good news is that I am ALL CLEAR on both scans, so that is amazing news. I have a reasonably aggressive cancer, so I was really worried that it may already have spread, but it looks like it has not. Phew.
The Registrar even gave me print outs of the results!!

Last time I went they confirmed that my cancer is Oestrogen and Progesterone receptive. This means something like the cancer cells divide more quickly when they meet an oest or prog cell, and I originally thought this was a bad thing. However, a bit more reading and checked with the doctor today, and apparently it is a GOOD thing, because there is much more they can do about it - hence, this is what Tamoxifen does. I am strongly progesterone receptive (which I think is rarer) and weakly oestrogen receptive.

The bad/good news though, is that my cancer is also receptive to the HER2 protein. This is generally an "aggressive characteristic" but the good news is there is a treatment for it: 18 injections of Herceptin at 3 weekly intervals. These will start halfway through the chemo. It can affect heart function though, but they will do heart scans at regular intervals to monitor this. Apparently the worst diagnosis is what they call triple negative - neither oestrogen, progesterone or HER2 receptive as all they can do is surgery, chemo and radiotherapy.

Radiotherapy will start 4-8 weeks after chemotherapy and will be 3 weeks of daily (weekdays only) treatments to both the chest and an area just under the neck where any lymph nodes might be lurking - ones they didn't find/couldn't reach during surgery.

The tamoxifen starts when the chemo stops, and they have agreed that I can have the gonapeptyl depot injections (the monthly ovary suppression & potential protection drug) at my local hospital instead of having to go to Cardiff for these. Phew. They mentioned they are just about to start a proper clinical trial about this particular therapy, but I can't take part because I have already had the first dose. THANK GOD!!! Otherwise I would have had a chance of receiving a placebo and not the real thing!!!!! I have read too many good things about it to not want to have it!!

I have agreed to help with two other trials though: the first one is simply a new way of training student doctors on their first hospital rotation. They assign a student to you, and this person goes with you on your chemo journey, so will be present at most of the chemo sessions and will want to talk to you about your experience and how it makes you feel. I think it is aimed at ensuring they see things from the patient's perspective. I have no problems with that, anything that can help them understand the range of responses they might come across!!!

The second is a proper trial but also not a medical one. A nurse is doing a Masters degree and doing a trial to see whether telling chemo patients the information they need during their therapy is better delivered on the day of treatment (Friday) or on the day of the pre-clinic (Tuesday). I have signed up and am (randomly, I had to pick a card!) part of the Tuesday gang. I automatically think this will be better as you have time to think about it, formulate questions and then can ask for anything you have thought of or forgotten to be repeated on the Friday. Otherwise you won't see them for another 3 weeks.

So, chemo (FEC) starts at 9am on Friday and will take 1-2 hours. I will be given steroids (protects your tummy/digestive system - but also makes you hungry and therefore fat!!) and anti-sickness tablets to take away with me, but essentially, everyone reacts differently, so we will just have to wait and see. G will be coming with me to that one, but if I don't have a bad reaction, I may be able to take myself in the future. We shall see....!!!!!

On a positive note, anyone who was a bit worried about me because of my last few posts (they are added as comments on the 'Egg Wednesday' entry for anyone who missed them), G and I went ot visit one of his old school friends at the weekend and took the Freelander 'green laning' in East Devon. It was great! These are unmetalled roads, therefore it is legal to drive on them, but they have no tarmac and are generally a bit wet and overgrown. I did the driving to start with, and G sorted out the buttons on which 'terrain mode' we should be in. The car also has a Hill Descent Control function which allows you just to steer it - it will control the speed and braking on its own to get you down a tricky hill safely! The car is amazing, as it totally looks after you. Jay did try and get us to drive through a river, but seeing as he has a modified and raised Jeep Wrangler, and we have an unmodified vehicle that I need for everyday use, we declined that one!!!

You can see photos on Facebook here:

and here:

Tuesday, October 20, 2009

Egg Wednesday (with 3 'comment' updates and a photo)

Just a quick update to say that egg collection is definitely tomorrow. Monday's scan was looking good, and the consultants have a meeting in the afternoon to confirm when they will do the collection procedure, and agreed on Wednesday. I'm first on the list apparently, so will have a light brekkie before 7am, then nothing for 2 hours. We have to be there at 8.30am to start the procedure at 9am. It is all quite precise as you have to take an injection of HCG hormone exactly 34 hours before - get it wrong and you ovulate and the collection can't be done.

They give you a conscious sedation (woozy, given painkillers, but awake - gulp!) throughout, but I am expecting to be sleepy in the afternoon. Quite looking forward to an afternoon on the sofa...!

Work continuing as usual. Went to Frenchay campus today for a meeting and ended up being 20 minutes late as it took 40 minutes to get through the last junction. I could see the campus from the queue at the lights, but the traffic was crawling along. It's been bad before, but never known it that slow!! Most amusing bit of the meeting was when we were talking about the revised staff appraisal process which is now called the Performance and Development review - one person commented that people might think we were looking at whether they were doing their job! No! Really?!!! I was chuckling to myself. And when another person wasn't impressed the feedback they might give would not be anonymous, in case they get 'attacked' about what they have said. Methinks that person needs to learn how to give feedback constructively!!

G and I are both a bit anxious about tomorrow, and I am feeling on and off sick (usually immediately after eating something), so our response to that is to order a curry!!! Best go and place that phone call..... Will update tomorrow (about the hospital stuff, not the curry! lol) xxx


Friday, October 16, 2009

A mini egg update

Surprised Laughing Be careful where you read the punctuation in that title!! Laughing Surprised

Anyway, what I mean is, here is a small progress update on the growth of my eggs for fertility treatment (it is definitely too early to be talking about Easter!!).

I've been on the fertility drugs for 8 days now (9th dosage will be done later tonight) and haven't had too many side effects - slightly snappy to G on some small occasions, and crying at some silly things (Stacey in Eastenders when she was sectioned, and seeing two little girls today in the hospital - spotted each other in the pharmacy and started blowing friendly raspberries and giggling at each other. One was clearly having/had chemo as she had no hair. They were probably 2 or 3 years old. So, so cute. I had to hide my tears from their mums!).

Had a further scan today (with a Sister, rather than the consultant) and she saw that the follicles had grown a lot and took more time to look for a few of them instead of just the one the consultant bothered to look at. Today, the largest was 15mm and she spotted 5 or 6 on each side. All on target for a collection next Weds, Thursday or Friday. Another scan on Monday morning to check further progress.

G also received his results and all is healthy there too!! Phew! He is relieved, as I am sure all men will understand! Razz

Work has been good this week. It makes me realise how much I really do love my job and the people that I work with. I can see myself working in a university library for life, if they'll have me! My team of senior staff have told me in no uncertain terms that they will not allow me to get too close to germ-ridden students over the next few weeks, and will lock me in my office if they have to!! But they appreciate why I want to work through - it is SO nice to feel normal, I can't tell you.

Had my flu jab this morning so I have a slightly sore arm (like a bruise), but otherwise it was no bother. I asked about the myth that the inoculation gives you a small dose of flu, but apparently that really is just a myth. Those that think it does were probably just coming down with a cold anyway!!!

So next week will be more scans, another wig fitting (of the ones specially ordered for me to try) and hopefully egg collection... another sedative/anaesthetic! Oh, and work. Nice, normal, busy days at work!

Tuesday, October 13, 2009

Feeling normal again

Have now been back to work for a couple of days, and it has massively helped with making me feel like a normal person and not a 'sick' person. Hurrah!!

Have also been extremely fortunate in that HR have approved an exception regarding my sick leave entitlement and given me 3 months leave entitlement at full pay. I'm only supposed to get 1 month in my first year of employment (which ends in January), and was very likely to go over that before the end of December even if I used all my remaining holiday instead of sick leave, so it is very generous of them. No worries about any days at only half pay now. Phew!!

The team has been coping well at work - which I knew they would - but I also do feel as if there are some things they need me for here and there!! They keep things ticking along well, but my job is to move things forward and help with the decision making, clear up oddities in policy and procedure etc. I managed to delete about 200 emails, and just have a handful now to still read in detail and respond to.

Yesterday, G and I first of all went back to the hospital in Cardiff: me for a scan and him for, ahem, providing a sample. My bit was easy, but my dosage was increased so it looks like they are a bit concerned things aren't growing as quickly as they want. Biggest egg was 10mm, and they want them to be at 20mm. Another scan on Friday morning to check progress, but I don't know how long they keep going before they decide it isn't growing enough and have to abandon... the consultant is very matter of fact, but perhaps a bit casual about it, so I didn't think to ask everything and she didn't seem bothered either way!!! I felt terribly guilty as well - I had dropped one of the needles on Sunday so it had to be thrown away. I confessed to the consultant and she joked (I hope!) "Oh well, just as well you're not paying for them!". How bad did I feel!?

G's sample had to be given in a different department.... suffice to say he hadn't been looking forward to having to do it in a room where lots of men had done the same thing over the same magazines (yes, apparently the pages were stuck together!!!), but he managed it! At least he only has to do his thing twice - once to be tested for quality, and once for the real thing (if we get to the stage where the eggs are big enough!). They should be fertilizing the eggs and freezing them as embryos, as apparently they freeze better in this state.

Luckily, we had something nice to look forward to after hospital, which was picking up the new car. Took bluddy ages!!! The salesman had forgotten to ask the accountant to prepare the invoice, so he was pee'd off to be doing that at 5pm in the afternoon, and then someone else had to come in and try to persuade me to buy GAP insurance, tyre insurance, special interior scratch resistant insurance, break a fingernail insurance.... etc etc. I am an "insurance averse" kinda person (yeah, yeah, I know. I'd have had my mortgage paid off by now if I had had some kind of life/critical illness cover...) so I wasn't going to sign anything there and then!! We eventually got the car, and it is totally lovely. Cruise control, Bluetooth, 6 speed gear box, 6 cd changer, aux input for ipod, electric windows, chairs, 2 sun roofs... so easy to drive. I just have to learn how to park it now!! It has front and rear sensors, but none on the side. Rubbish!!! ha ha ha!

It is SO nice to have my freedom back, as I can drive this car really easily and am actually more comfortable in the drivers seat due to where the seatbelt falls.

Tuesday has been a normal day. Work, food shopping, and then a visit to friends Hannah & Patrick (to give their daughter her birthday present and meet their new kitten - so lovely - bonkers and friendly, just the way we like them!), and then popped in to see Charlotte & Marcus to see how their house renovations/extension building are going (they found a water main leak and the plumbers still haven't switched the hot water back on - its been off for more than 2 weeks!!). Oh, and to show off the new car!!! Well....

Righto, got to read an article on green laning, apparently, in the Land Rover International magazine that G bought. See ya'll again soon. xxx

Sunday, October 11, 2009

New car to look forward to

So far so good on the injection front. I have done it twice now - Friday and Saturday, and on Saturday the second drug had to start so that was two injections. I'm not finding it too uncomfortable, although the Orgalutran was a bit sore for a while; the Menopur doesn't seem to hurt at all now. However, the side effect of a dodgy tummy is making an appearance.... will keep an eye on that!! I have also lost my appetite which is fairly unheard of!! I am still eating (have no fear!), but just don't fancy anything much.

On Friday afternoon I went to the GP's and got my sick note for work. Another one who thinks going back next week is too soon (except G, who can now see I am more than capable!)!! He nearly signed me off for a bit longer, but could see I fully intended on going back on Monday so gave me the dates I asked for!!! I also asked about having a flu jab. I had been invited as I have very mild asthma, and it is standard for the GP to ask all asthma sufferers to have a flu jab at this time of year, but the clinic dates were during my surgery and first week of recovery, so I didn't go (and never have, to be honest).

I have read that as your immunity is so low during chemo, it is best to get one done before starting - especially at this time of year. He agreed, but neither of us knew whether I should have the jab at the same time as being on the fertility drugs, so he recommended I ask at the hospital on Monday and see what they say. He also advised an extra exercise for my arm (which I am doing and trying to push that little bit more now), and recommended that I take regular paracetamol as after 2 days it builds up to a decent pain relief and will make the exercises much much easier. I haven't had any pain relief since towards the end of week 1 after surgery, and it does get sore, especially when I move it... so maybe I will.

I drove to the doctors surgery (G's car, as it is more comfy than mine) and felt fine driving, so getting that bit of freedom back is a huge relief!!

On Saturday, G and I went back to Cardiff to collect the remaining fertility drugs that they hadn't got enough of on Thursday, and then found the FedEx depot to collect the new cordless phones I had ordered. I want an answerphone to tell callers that the Brakewells don't have this number any more!!! When you're at home, you really notice those annoying wrong numbers! I've had this phone number for 3.5 years, and STILL they call for Mr & Mrs Brakewell!!! I should have asked for another number from BT at the start, but it's too late now!

We then went back to the Land Rover garage that we popped into last saturday, and negotiated to buy a Freelander II. I had intended on getting a fairly basic one, but there was one there with all the added extras at a decent price.... so we went for it. I didn't quite get the price for the Z4 that I wanted, but we did push as far as we could push them and the sales manager approved the last £250 that I wanted even though the salesman was trying to deny me!! G will be happy if he gets a free Land Rover umbrella!! This is the one I'm getting: (not sure how long this link will work for, so look, quick!). I collect it on Monday after our next visit to the hospital in Cardiff. It is so much more comfortable and very easy to drive, so I think I will really enjoy it, especially when we can fit in all our camping gear next Spring!!

So, back to work tomorrow, if only for the morning due to our Cardiff appointment at 3.30pm. I am looking forward to having something else to think about, and am sure my boss won't mind if I work from home some days - she called on Friday and we had a brief chat, so we just need to identify what tasks I can do and see how it goes. Being able to drive (for the time being, anyway - don't know what Chemo will bring!) is a god send.

Let's just hope these extra hormones don't make me a nightmare to work with! I am already being snappy with G regarding his driving (but then, I was prone to this on occasion anyway!!), and was crying my eyes out when Stacey in Eastenders got sectioned the other night!!! ha ha!!

Saturday, October 10, 2009

A week of injections and scans coming up

Originally written: 9th October 2009.

It has been non-stop this week, or so it feels. The roller coaster trundles along at a decent speed!!

Monday was nice and quiet - I probably overdid things a little, so took things more easily on Tuesday.

Wig fitting was a bit of a disappointment. I was hoping for some camp fun, but the chap kinda took over and was all set to give me back the hair I already have!! I don't want this, I was growing it, so I want something nicer and longer!! He got the message eventually, but the ones we tried were too boxy so he has sent off for some nicer ones. I'll have to go back next week to see if these new ones are better.

On Wednesday, I had my filling fixed (no anaesthetic as it wasn't too sensitive and he didn't need to drill it), and then G and I went to the fertility clinic. We really didn't know what to expect. As it was, they were lovely, and after chatting to us to confirm our details and situation, got on with taking blood and giving me a scan to see what stage of my cycle I was at. Normally, they start you on cycle suppressing drugs at day 21 of your cycle, but I am too far along for that so have given me Menopur to stimulate the ovaries and develop the eggs, and Orgalutran to suppress my natural cycle. This second drug starts on Saturday.

I have to inject myself in the stomach. The Menopur is 5 vials of incredibly fine powder that you mix in the syringe with a teeny vial of sterile water, and then inject. The Orgalutran is a ready-loaded syringe. The nurse did the first one, and it was a little sore for about half an hour afterwards, but otherwise not painful. I have been jabbed so much lately that I am quite used to the sensation!! First one done by me will be later today...

I have to have another scan on Monday to see what the hormones are doing to me. It'll all probably only take 7-11 days and then they'll do the egg collection and fertilization, and let us know if we have any embryos worth freezing.

It has all happened so quickly!! We're stunned and amazed. I know we have massively jumped fertility clinic queues, but quite simply, I only get one shot at this and it has to be done soon as we need to get started with chemo! My chemo has only been put back by 1 week, which is amazing.

Oh, and they are also happy to give me ovary suppressing drugs (a monthly injection) during chemo which puts them into hibernation and may protect them and give me a better chance of coming out the other end still fertile. Research in this area isn't very conclusive yet, but they feel it can't hurt to try it.

Also yesterday, and at a different hospital (so we spent the day in various waiting rooms and driving across south east Wales! Thanks to mum and dad for doing the taxi job again!!), I had a CT scan. It was supposed to be last week, but the machine broke down. I had to drink some gastrogrubin or something, a contrast fluid that smells like Sambuca (but doesn't taste as nice!), the night before and an hour before. When I got there, they made me have more, which I drank like it was a shot! Then you lay on the machine's bed, and get whizzed under a doughnut style scanner. At one point, they add a clear dye via an IV in your arm (another stab!) and this makes your whole body feel hot and feel as if you are wee'ing yourself - its a bit like putting the heated seats on full in the car!!!

That's it, all done in about 5 minutes.

I will now wait to hear when I find out the results of this and the bone scan.

Finally, I had been hoping to go back to work and have an uninterrupted week next week, but it looks like the fertility clinic stuff will get in the way, so I may have to rethink it. I may ask if I can work from home on appointment days, as the clinic is in Cardiff when I work near Gloucester! It's a long way! Phew.

Bone scans, wigs and fertility clinics - and teeth

Originally written: 2nd October 2009.

Had ERPC on wednesday. It went without any problems, no bleeding to speak of afterwards, and definitely no pain. Went home and drank champagne. Well, why not!

Thursday 1st Oct was the first day since 20th September that I didn't have to go to the hospital for something, so mum and I went to a local fish and deli shop, bought sea bass and had a nice coffee, and then pootled about during the afternoon.

Today, mum drove me back to the hospital to have a bone scan. Now that I am not pregnant, they can do this - it requires a painless radioactive liquid with no side effects (except they advise you don't go too near small children for a while!!) to be injected so that the bones show in the scan, so that was done at 9.30am (she went straight into the bruise created by the bloods taken on Wednesday; well, might as well!!). We went home and walked about 3 miles around town to get some exercise, and then drove back again for the actual scan at 12.30pm. This entailed me lying on a bed which is electronically forwarded under the scanner, and then very slowly removed. It scans as you move outwards, moving millimetres at a time. You keep your clothes on, and it takes about 17 minutes, so I just lay still, closed my eyes and relaxed. Easy.

I was supposed to have a CT scan (similar, but you drink the contrast liquid and it scans the soft tissue and not the bone) today too, but the machine broke down so I am waiting to hear about another appointment when it is fixed!

However, I did get on and call the 'wig man' to make an appointment - "ex-TV star of makeover shows" and "Welsh hairdresser of the year finalist" so his card says!! He sounded lovely (and very camp) and I am due to go for a consultation next Tuesday evening. He says it is very relaxed, almost a party atmosphere, and you should bring one or two friends to give an opinion on what looks right. I have been growing my hair, so I'll probably just get one styled in the way I was trying to grow it - saves the trouble!! I expect my hair will fall out in the first month or two of chemo - mum thinks from the first clump coming out, the rest followed within a week, so you do need to be prepared. Mind you, she hated her wig, so I hope mine will be less itchy and more comfortable!! Otherwise, hats!!

Fertility clinic is next Wednesday, so we each have long forms to complete before we go. We have to take ID and photos too!!! The forms basically ask about your fertility history and whether you are a paedophile, violent or a drug addict! All the way to Cardiff for that...

And finally, as if you didn't think I had enough to deal with - I had a toffee from the selection a friend gave me to help me feel better, and it pulled a huge filling out!!!! So now I have a gap in the back of my tooth. Luckily, it isn't too sensitive, so I can afford to wait until next Wednesday morning to get it sorted it out. Having a dentist 30 miles away and not being able to drive, isn't the easiest thing...


Keep smiling Smile

A sad day

Originally written: 29th September 2009

I'm afraid the news from my scan is bad news. The baby didn't form - again. Another "anembryonic pregnancy", silent miscarriage, blighted ovum or whatever you want to call it.

Obviously, devastated to see the empty gestational sac on the scan, but could see as soon as it came up what it was. Back in for an ERPC tomorrow, just want to get it sorted.

Followed by meeting with the oncologist, chemo starts earlier than expected now (23rd October) and with 'normal' rather than modified drugs - 3 rounds of a treatment called FEC and then 3 more of Taxotere at 3-weekly intervals. Then radiotherapy. Then 10 years of tamoxifen!!

They are making me an appointment to see a fertility specialist to look into harvesting some eggs, which will be my fail-safe reserve. The chemo may or may not make me infertile, but if I've got the eggs then at least I have the option of IVF later on. Apparently, I can take a break in the Tamoxifen to have a baby and then go back on it, so that isn't as bad as I thought it would be - we could be trying again in a year.

On the plus side, the dressing was taken off my scar for good now, so I can have showers! And I can wear a 'normal' bra so therefore more normal clothes - the support bra thing they gave me came up very high and was visible under all but the highest necklines.

We spent the morning in tears, to be honest, but I feel stronger again already. There is only one thing I have control over in all this, and it is positivity and my own health and strength, so that is where the focus is. Lets crack on and get it sorted.

Making progress

Originally written: 28th September 2009

I am surprised how quickly you can recover from fairly major surgery! Today is my first day "home alone", which I was quite looking forward to even though I have loved having my parents here to help out and really needed them last week.

I can now bath, wash and dry my hair and dress on my own (albeit slowly!), and can potter around the house and kitchen. My right arm has much more movement in it, and although far from back to strength, is much more useful now!

I still have my drain in, but it will have been in a week today so it is definitely coming out tonight. Finally there is a lot less fluid in it: it has to be below 40mls to come out, and has been more than that every day so far.

So I went for a walk today, into town and pootled about a few shops. I took it very slow, and did feel a teeny bit wobbly, but was slow and steady and got myself back home again. I had to put a cheque in the bank, buy a few birthday cards and also got myself some new hair clips (might as well enjoy my hair while I can: I've been growing it - ironic that it is likely to all be gone in a few months!) and I bought a mastectomy bra. I am still wearing the support bra/top thing that the hospital gave me but hope that once the drain is out, I can try wearing a proper bra again. The only difference with a mastectomy bra is that they have pockets for a prosthesis, but this seems often to require thick straps and a very high centre, which shows under some clothes. I bought a pretty brown one, where the straps are wider but lacy, and the top of the bra is pretty enough to be on show if my top is a little low!

I've also been busy buying things online: another bra, some higher necked tops (my whole wardrobe is full of lowish V necks!) and I am getting our weekly shop delivered by Tesco to save G a task.

So all in all, I am doing really well. The only down point was last week, with the results of the pathology tests. My cancer is a grade 3 (more different from normal cells that lower grade cancers - there are only 3 grades). It had also affected all of the 23 lymph nodes they removed. This basically means that there is a higher chance of it having spread, but as yet I don't know how you find out whether it has spread or not! A question for my meeting with the oncologist tomorrow, when I'll find out what chemotherapy they are going to recommend. The news knocked me back and I spent the afternoon sleeping and crying, but bounced back the next day, determined to get fit enough to fight it off. Radiotherapy and hormone therapy will follow the birth of my baby (I am feeling more and more sure I will get that far!!)


Originally written: 24th September 2009

I haven't had access to a proper computer for a few days, but it is now time to report back on progress.

I had surgery on Monday which went well. I went into hospital on the sunday afternoon which did feel a little pointless, but got me settled in and I met my "ward-mates" before being too groggy! I went down to surgery at about 8.30am and finally my tears came while I was waiting for the anaesthetist - it felt very scary down there right then, even though logic tells you they are doing everything they can for you and you really don't have any other option.

The anaesthetist was lovely, he was honest when I asked whether he was changing anything he did because of the pregnancy by replying that almost every drug is contra-indicated during pregnancy but he would check with his boss to see if there was anything. I think he said they might not give me the anti-inflammatories for instance, and there were some things that are often down to anaesthetists discretion, but that I'd get all the things I had to have. His wife is 16 weeks pregnant, so I know he understood.

My surgeon was also lovely - for a consultant he is very human! He squeezed my hand a few times before I went under.

I came round a couple of hours later, and then spent the rest of the day in an out of sleep and throwing up in between. The awake periods gradually got more lucid and brighter, and I stopped upchucking at about 7pm. It was just little amounts, water to start with, which became bright green due to the blue dye they had put in me to find the lymph nodes. Turns out they took all the lymph nodes out as they looked a little misshapen and it also saves me going under twice while pregnant, so I am grateful for that.

I was allowed to go home on the Tuesday afternoon, which was marvellous, and my parents have been looking after me well ever since. I hope this has relieved G considerably as he is still going to work through all of this, and is finding it hard to sleep/wake and concentrate as it is, let alone worrying that I am not coping on my own or trying to do too much. Mum has helped me dress, have a bath, wash my hair etc, and dad is cooking up some lovely dinners.

On the pregnancy side, I am feeling fairly nauseous! I have a funny taste in my mouth a lot, and can't decide what I want to eat to stop the nausea! While this is 'good' in that I didn't feel nauseous a lot at all in my last pregnancy, and is hopefully a sign it is clinging on, it is also fairly miserable. I can't exercise much, I can't even lift a kettle or a pint glass with my right hand, so needing to eat will leave me very fat! I feel sick and also hungry at the same time, even if this is about 10 minutes after having eaten my dinner!! Strange.

Back to the hospital this afternoon to have my drain checked - it is under the skin of the armpit and stings if you move wrong, and needs emptying every day. And then to see the consultant to hopefully get the results of the pathology on what was removed. I have no idea what news that will bring, so lets hope it is good.

PS. The obstetrician sent a copy of his consultation last week, which said that on the 15th Sept I was 5+6 according to dates, too early to give a proper gestational date, and due date was 12th May. So according to that I will be 7+1 today, and 7+6 when they do the next scan, next Tuesday.

Confirmed diagnosis

Originally written: 17th September 2009

This has been an interesting week, you could say. Monday brought the confirmation of invasive cancer diagnosis, and a date for a mastectomy of Monday 21st September, a week away from notification. I had all the pre-op checks on Tuesday, including meeting a lovely obstetrician, Mr Dawson, who will keep a close eye on the baby's development. He did a scan and reckoned that I wasn't quite 6 weeks. He could see the gestationasl sac, measuring half a centimetre, and that is what he would have expected to see. Too early to see a heartbeat.

I'll be 7weeks and 3 days when they do the next scan.

Tuesday also brought telling my team at work, and confirming with my boss. Everyone has been very understanding and I feel very loved and looked after without being too overwhelmed by them. I think they can see I am the practical sort and don't want to be molly-coddled.

G's mum came over on Tuesday, and my own mum had been with me on Monday evening (after we got back from the hospital) and Tuesday morning appointments. Although it was lovely to have them here, I was glad when it was just G and me again. That said, I have also had to spend a good part of the evenings on the phone telling friends. I'd quite like a night off from talking about it, but I expect that won't happen any day soon.

I am glad to say work is all under control and up to date. The team are very capable of running things without me, and my boss is coming over tomorrow so we'll sort out any extra cover we might need and she will support the team over the next few weeks while I am away.

I may be being naive/overly optimistic, but I hope only to be off for 2-3 weeks, and not 4 or more. I'll get fed up being at home, reading and watching tv and DVDs, I just know it.

So thats me for now. Still OK, although I think anxiety is starting to build a little bit.

I also wonder if morning sickness is starting to come along too - mouth keeps filling with saliva and has a metallic taste to it a lot of the time; appetite is all over the place. I expect the combination of things going on are probably working together!

That said I am still 'glowing' (I was told that today by someone who didn't know I was preggers!!) and feeling well and happy.

First visit to the breast clinic

Originally written: 9th September 2009

OK, well I found out last Friday that I was pregnant, and knew at that point that I had a breast lump which was about to be checked out. I expected to be told off for getting pregnant when I knew I had a lump.

I had that lump check up last night (Tuesday). I wasn't told off, not yet, but I have been told I may face some difficult decisions.

It looks like my lump is breast cancer. The biopsies have been done and the results should come back next week, and they'll be taking a blood sample tomorrow which should also give more information about the type and stage, but the mammogram was fairly conclusive ("only 95% sure" said the nurse! Oh, great!).

However, I am trying my best to remain optimistic, as I've been reading about women diagnosed with cancer during pregnancy - some in early pregnancy like me - who have gone on to have their baby. I suspect doctors would rather it wasn't there as a complication, but I will try and fight to have it. I am worried this might now be my last chance.

From what I have been reading, a mastectomy and then chemotherapy once (if!) I make it into a 2nd trimester should be do-able.

I don't care so much about losing a boob - I'll get a reconstruction straight away if I can - but I do care about not being able to have children. I expected to get this in my 50's, not at the age of 36...

Welcome and introduction

Hi folks
I thought I would create a blog to keep people up to date on my progress, as I know friends and family are interested, and it is hard to know what is going on without repeat emails, texts and phone calls (either to me, or my immediate friends and family).

I hope this works for you. I really just wanted to be able to reassure you that I AM FINE, and relieve some of the burdon of telling you the latest from my parents and others.

I love you all, and I know you love me, and I know I can call on you if I need to. Please rest assured I am not going to be brave, or try and do too much when there are people there that can help me. But also that I need to do some things for myself and not feel like an invalid or victim!!

Can I also take this opportunity to say thank you for the various cards and notes that many have sent. These have been lovely. I don't have them on display as they are a constant reminder that I am now a 'sick person' when I neither want to be, nor feel like it!! But they have been appreciated. It'd also be really nice to hear how YOU are getting on, as news of everyone else is a lovely distraction from me, me, boring me.

I have called this blog A Year in My Life, but I hope it will be less than a year really. It is just a phase we have to get through and then life carries on.

This blog will include some stuff I wrote elsewhere so that the story starts from the beginning, but I'll also update it every few days.

Hugs to you all
Emma xxxx

PS. Don't be afraid of asking questions. I am happy to answer what I can.