"The first one is usually the worst"

That is a quote by one of the Oncologists. A new one which I saw on Wednesday. I went to see her to discuss how the first round of chemo had been and what my side effects were and how I had coped with it. It was one of those horrible afternoons in the unit where everyone was delayed. We had already waited about forty five minutes and the rather prim volunteer who helps out with the waiting lists told us it would probably be another hour. Usually at this point we head up to Costa and get a coffee but we had to go to the allotment after the appointment and time was dragging on (it was about 4 o'clockish by this point) so we decided to go to the allotment anyway as it was only 5 minutes walk away from the unit (handy or what??). I told the volunteer this and she just looked at us funny and said, 'I don't think there's time for that', 'it's only over the road' I said, 'not even as far a walk as Costa' which is over the other side of the hospital. 'Well, I just put down that you are going for coffee dear'. Hospitals have a very strange set of etiquette rules!
So we went to the allotment, we didn't do much just a few bits and bobs. When we came back in one of the Healthcare Assistants said that we could wait another hour to see Dr Sawyer or go in and see this other doctor that I hadn't seen before. We opted to see the new person, there was no way I was going to wait another hour. I know they are all going to tell me the same thing. Bit of advice if this happens to you: unless you are seeing one doctor because you want to ask THEM something specific (say if it was Mr Desai and he was the one operating on me I would want to see ONLY him), then wait. If not, don't bother, they all have your notes in front of them and generally the other docs are on hand if they need to ask a question. Don't ever be afraid to question a doctor, don't forget they are there to look after you but YOU are the only person who truly has your best interests at heart and if you are AT ALL unhappy or confused or unsure about anything they say then get them to explain it. Anyway, that was a bit of a rant wasn't it. I just think that if I have problems understanding them sometimes then how on earth do non-healthcare people manage. My other bit of advice is to take someone sensible in with you, with a notebook if necessary because Ash has been great at remembering the things that I conveniently forget!

Anyway, after all that waiting the appointment was about 5 minutes although I did try to drag it out as long as possible as we had been waiting a while. She just asked me how I had been feeling and about my side effects but since they were nothing too horrendous (it's all relative I suppose!), she said they would not change the chemo dose and that it "The first one is usually the worst"!!! How I have clung to those words!

I had blood taken that day too, it was to check my white blood cells, specifically the neutrophils. There are several types of WBC but these are the important ones for chemo. The numbers were good so my second session was booked for that Friday.

Mum took me in on the Friday, we went a bit early to see the Wig Lady. The Trust pay for one wig for you (they are about £100) and if you want a back up hairstyle you can buy another one with a discount. The previous week I had tried on quite a few but they were mostly old lady styles which is SO not me! Ash couldn't stop laughing at me. The thing is when you try them on when you still have hair you have to wear a bit of old tights to prevent your hair from falling off into the wig. Very hygienic etc. I had just washed my hair that morning so it was all lovely and shiny. NOTE: this is not good when trying on wigs! Mum helped me with the bit of old tights (bandit mask) as it wouldn't stay on my head but she ended up pulling it over my face most of the time so I looked like a bank robber! Ash came down too and we looked at the wigs that I had ordered the previous week. One was long and curly - the hair I've always wanted! It was a tad girly though and I don't think I could have maintained it. We chose a two-tone one (I might be going back to blonde again!) and I'm going to pick this Friday which one I am definitely having. There is a funky one with kind of pink bits in it which I might buy, you know for parties and things! Here's a pic of one I tried on that was the closest to my real hair as it could get (colour etc) but waaaaay too long and thick!
PS I CANNOT GET THIS PICTURE TO ROTATE!


The second lot of chemo was nothing major, the Dexamethasone was weird again. The old nettles in the knickers feeling hee hee! I didn't feel sick at all this time. We went home. That was it. I was VERY pale when I got in and a bit tired.

I'm going to wrap this blog up and start a new one to try and keep them short and sweet. I think I'll be able to get them out a bit more regularly then (miracles COULD happen!)

See you all soon
Liz
xxx

One down, seven to go!

After that first bout of chemo I did feel grotty for about five days. I was tired but not sleepy, headachy without actually having a headache (like the precursor to a migraine), nauseated but not sick (well, just once - projectile onto the toilet hee he, Ash had to clean it up). We actually managed to go up to Westerham on Saturday for a cream tea (which is what I threw up later) and it was nice to be out and about although I was tired and couldn't walk too fast. These are the times I wish we had a car. The weather was just too glorious to stay indoors though and I really wanted some fresh air. Usually at the weekend I would open all the windows to the flat to let some air in but now that Dora is here and is VERY curious about the outside world, we can only open them a little bit or not at all. I think we have to accept that soon she is going to make a run for it outside, just to see what is out there.

Sunday, Monday and Tuesday I just felt tired and mostly stayed in watching television or playing Wii games. I did force myself to go out and mooch round Orpington, I even went for a walk in the park but I was shattered when I got back.
When I left the unit on the Friday after the chemo they gave me a big bag of drugs to take home. They weren't anything major just a lot of sickness and bowel-orientated medications. Chemo really constipates you and since that is never something I have a problem with that knocked me for six. The rundown is as follows:
Day 2 (the first day after the chemo): In the morning I took 3 Dexamethasone, 1 Ondansetron (both anti-sickness), 2 Dioctyl (anti-constipation), 1 Omeprazole (protects your stomach), 2 Paracetamol, 2 Ibuprofen. Also (Ashley did this) I had to have an injection of something called Neulasta which is a small amount of a solution which prevents your white blood cells from disappearing. The major side effect of that is bone pain! I didn't get that though luckily. I then had to take 2 more Dioctyl before bed.
Day 3 and 4 the Dexamethasone, Omeprazole and Dioctyl continue plus more painkillers for headache.
Day 5 and onwards just the Omeprazole and Dioctyl.
The reason for the sickness, diarrhoea/constipation and mouth ulcers (which are common with chemo) is that the chemo drugs attack fast-regenerating cells and your gastro-intestinal tract has lots of those. So top to bottom that's where the upset is. To be honest, of all the systems in the body, it's not bad - I'd rather have my GI tract upset than my liver, kidneys, heart or lungs.

Before I take any painkillers I have to check my temperature. This is because if you get an infection, one of the first signs is a raised temperature and painkillers mask that as they bring your temperature down (which is why you take Paracetamol-based products when you have the flu - it deals with pain and fever). Pharmacology lesson over for another week!

OK, it's now Tuesday and I really should get this finished as I'm due to have the next lot of chemo on Friday. Am not looking foward to it - I think it's the knowing that I am going to be ill. Maybe worse than last time. Before I have it I am seeing the Oncologist tomorrow - I think to talk about how it was last time and maybe rejig the doses, I don't really know. Then they are going to take some blood from me, I think to test WBC (White Blood Cells) but again, I'm not really sure. I'm not being VERY helpful here am I???!!!!

I just checked my MySpace page for the first time in ages as I am mostly on Facebook now and I got a message from a guy that I went to uni with.. THE FIRST TIME!!!! Well, I graduated in 1998 so it was quite some time ago (man I'm old!).
Incidentally, I had my birthday at the weekend, Me and la famille went to Downe village to have afternoon tea - it was awesome. Here's the rundown:
Sandwiches (I had smoked salmon and cream cheese)
Toasted teacake or crumpet
Scones, jam and cream
Cake
AND as much tea as you can drink!!!!!!! All for £8.50 - what a bargain!

As I write this, Ophelia is out, Ashley is asleep on the sofa downstairs and Dora is sleeping on my bed. It's a bit quiet (probably why I've gotten around to blogging).

Ash and I went to the allotment after he finished work today and planted our first plants in!!!!! On Sunday we took my mum and dad there and we planted my Bay tree (which mum's friend Rosie kindly nursed back to health after the hot summer of 2003 and my neglect!) but that doesn't count. Today we planted rhubarb, asparagus and raspberry. Watch this space in a few months to see how they grow. I'll pop some pictures up.




Thank you everyone for my cards, presents and birthday wishes

Liz
xxx

Enough Already!

OK so I updated you all on where we were as of the beginning of this week.
I went in to see Jane on Monday for her to check the wound and make sure it wasn't a seroma. She had already asked me on the phone whether it felt like a seroma, she asked whether it felt squishy like a hot water bottle and was the fluid all moving around. I was like 1. Ewwwwwww, that's gross and 2. No. There was another nurse there who was learning breast care who was really nice - it reminded me of when I was a student. Ahh, those carefree days when there was no responsibility or cynicism about the NHS!
When I went in she asked me the same questions and I'm convinced it's just because she wanted to get her big needle out and aspirate it (draw out the fluid with a big needle!). She said it was definitely an infection and to go back to the GP on Friday when the antibiotics finished to get it checked out and maybe have another course of antibiotics.

The doctor from Guy's called and said that they were not going to give me any IVF treatment. They had discussed it at their unit meeting and decided that the procedure was too risky for what would be not a good result. I called Jane straight away and she said she would follow it up and that I should come in and see the Oncologists on Wednesday

My next appointment was Wednesday with Dr Sawyer, one of the Oncologists. She was remarkably young (usually female consultants are ladies of a certain age but she was from Guy's and I think they probably have a higher turnover of staff. Unlike Bromley where the consultants last for ROUGHLY 100 years).
I was actually at that appointment with my Mum as Ash had to work and afterwards I was going to see Mum and Dad's new flat (which has taken them 9 months to buy!).
The doctor gave us quite a bit of information:
1. They are not going to give me any IVF treatment. What the doctor at Guy's had failed to mention to me before was that even if I had tried to get pregnant normally at this stage, the chances are that it wouldn't have worked. Something to do with not very good follicles or something. I got a copy of the letter that Guy's sent to the PRUH but I don't really understand it. I spoke to Jane about it and she just said that with those results it was a no go for the procedure. I just wish someone had told me that to start with!
2. Dr S discussed chemo options with us. Again, it was all a bit complicated but there are basically two cycles of chemo. The doctor went through the studies that they are participating in at the moment and said that it might change the way I get the chemo i.e. it may be once every two, three or four weeks; it could be pills rather than IV and that I might be put on a drug called Zolodex to suppress my ovarian function in the hope that the chemo will not damage them and I will get full fertility back.

After seeing the doctor I went in to the Outpatient area of the Chartwell (where they give you your chemo) and Nicky the chemo nurse took some blood and they all had a good look at my veins to see what they were like. It was decided that they would try and give me a permanent line. This is a tube that goes into a vein either through your arm or through your chest. Yeah, it sounds bad. Well, let me tell you - I looked it up in the Royal Marsden Book of Clinical Nursing Procedures (every nurse's BIBLE) and it is pretty horrible! I wish I hadn't looked! The point of the line is that the inside end of it sits in your Superior Vena Cava, pretty much the biggest vein in the body. It means the cytotoxic drugs (chemo) are pumped round your body nice and quickly anyway!
So they put me into the computer to see which course of treatment I would get for the studies. Basically it is all randomly decided (which is the only way to do clinical trials). I am going to have 8 cycles of treatment. 4 of Epirubicin which will be every 2 weeks starting from this Friday (15 Feb), 4 of CMF which will be 1 every 4 weeks and I didn't get the Zolodex which is a bit of a bummer. I was pretty annoyed about this and Ash and I had a cry and cuddle later about the IVF. It's tough to think that we might not get a chance to have kids but we can't think about that now, we have to get through the chemo first and then see what happens. The stats are that if you are under 30 the chance of you getting your periods back after chemo are 60%. They they drop until you're 40 when the chances are pretty low. As I am only just 30 (OK, nearly 31!) my chances are still pretty good.
For the Epirubicin I am lucky to be on the trial of having it every two weeks as although I will still feel ill and lose my hair (more about that later), you tend to go neutropenic (when your white blood cells disappear) 10-15 days after each chemo session so because I will be having ANOTHER lot of chemo at day 14 I won't go neutropenic. I don't actually know why this is and I haven't asked yet but if I find out I will let you all know! This is a good thing as that was the thing I was most worried about because catching something even as minor as a cold if you have no white blood cells means that you can die and I am NOT going to die from a flipping cold!
For the CMF I am having the regular treatment that I would get if they weren't doing any trials. This is just going to be slow, once every 4 weeks is really spread out but hopefully I will be able to work in between sessions.

So that was last week, it's now Wednesday 13th February. Last weeks after my appointment I got my period which as usual I moaned about until the sobering thought hit me that it might be my last one...EVER. Weird and just a little scary. I think when I've got through this I just won't complain about my period ever again. I've always harboured a secret wish to get the menopause early as I hate periods (pain, PMT, general uncomfortableness) and I've not wanted kids. Things have changed now I've met Ash. When we thought we weren't going to be given a change to have kids it really upset me. I think I want to be the one to make the decision, I don't want someone else telling me that I can't have kids. Also it's not going to be a natural thing that I lose my periods, it's being induced by drugs (that I don't really want to have anyway!).

It's now Friday 15th Feb and I'm going to wrap this one up pretty soon. In the last couple of weeks I've been in to work which has been nice, at least seeing everyone makes a change from just being at home all the time. Thank you Lindsay for continuing to be inappropriate and tactless and making me remember that sometimes there are just more stressful things in life than having cancer :)!!!
Yesterday I had the Hickman line put in. They were going to try and put a PICC (Peripherally Inserted Central Catheter) which goes in at the anticubital fossa (inside of your elbow) and up the vein into your SVC but they couldn't find a vein.
Having the Hickman put in was horrible, there was no sedation just local anaesthetic and a lot of pushing and pulling which was quite uncomfortable. I got quite upset but I was thinking about how much I didn't want to have the whole thing done, chemo etc. Ash was on a bit of a busman's holiday as he works in Radiology where they do the procedure but he knew everyone and they were all lovely to me which is nice.

The first dose of chemo was this morning. It was nice not having something going into your hand as usually you can feel it and with the Hickman line you can't feel anything going in at all. They put a small bag of saline up and then used about 4 large syringes of pink fluid which was the actual chemo. I had some anti-sickness drugs first (Ondansetron and Dexamethasone). The Dex (when it goes in IV) makes you feel as though you have "stinging nettles in your private parts" to quote the Sister. It really did as well, as it went in I was like, 'yeah, this is OK' and then I started wiggling in the chair - it was a weird weird feeling!!!
The chemo made me feel a bit nauseated at first but soon settled down and it was all done in 45 minutes. Had coffee, went home, Tracy gave us a life and came in for a tea and catch up which was lovely as I haven't seen her for AGES!
Today I have felt a bit off-colour, just on the edge of nauseated and a but tired and weak-feeling.
What they never told me was that when I went to the toilet my pee would be ORANGE! And not regular orange but Sainsbury's Carrier Bag orange! It had faded through the day but it was weird - I had to get Ash and Tracy to witness it!

Thanks to everyone that sent me texts and messages today for encouragement. I'm touched that so many people remembered that it was today.

Will update soon, I promise...!

Lots of love


Liz
xxx