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