It's Been A While (the actual blog)

OK folks, well, posting a blank blog was NOT something I intended or even did by accident. This is what happens when you have a kitten that's obsessed with trying to catch the cursor on your computer screen! The cat has managed to walk over the keyboard and not only delete the blog I was doing (two paragraphs of it) but she's also managed to publish it! Some of you may say she is very clever, well you're probably right but it's an evil sort of genius!

So here it is again, as much as I can remember (or be bothered to write):

I apologise for not writing much recently. I was going to try for once a week blogs but to be honest not enough has been happening. Following the previous blog, I had another appointment with Mr D the following week and it was for a wound check. It was lucky for us because the clinic was running at least 2 hours late (pretty much standard for the NHS although so far it hasn't been that bad), and what happens usually is that a Healthcare Assistant comes out and calls you in but Jane, my Breast Care Nurse poked her head out and called us in instead. Looking back I realised that we'd probably skipped the queue a bit. We'd already waited an hour and a half so I didn't feel THAT bad about it but that is what happens when you are a nurse and staff. It was a five minute appointment and the wound was fine, healing nicely. Mr D said he wouldn't need to see me again until the fifth cycle of chemo when we would discuss further surgery (to put the implant in again and reduce my left breast).
The schedule is now as follows:
IVF
Chemo
Surgery
Radiotherapy
Tamoxifen (the 'wonder' drug that's been in the papers)

OK, the cat seems to have gone to sleep so I think I'm safe. I'm going to attempt to post a picture to prove it! (See above. She keeps waking up when I try and take a picture of her - poser!)

After the appointment with the Oncologist I was referred to Guy's Assisted Conception Unit (ACU) for the IVF treatment. I had been waiting for a phone call and had heard nothing so I got Jane to chase it on the Monday and the reply was that my appointment had been at noon that day. Well, that's not a lot of good when they don't tell you that you have an appointment!!!!! I had been waiting to have that appointment so that I could go and visit my mum in Cornwall for a few days, maybe a week.
Another appointment was made for the Thursday and I arranged to catch a train that afternoon from Paddington to Liskeard.

Ash and I went up to Guy's, got lost in the hospital (it's MASSIVE!) and eventually arrived at the clinic (still 10 minutes early, thankfully). They made us wait for over half an hour (as there were other patients coming in that had to go first apparantly) and I wasn't even on the list properly, I was an annotation on the side (I think because they had had to rearrange the appointment).
We finally got in to see the doctor (an associate specialist not a consultant) just after twelve noon. She was rather vague and kept talking to us as though we were having regular IVF. She told us the procedure which I mostly knew but said that they didn't use a General Anaesthetic but used sedation. They ultrasound you on the inside (a transvaginal scan) so that they can see your ovaries (which look like shadows on the screen) and then use a big needle to extract the eggs. I'm not 100% on how they actually do it but if it's not a GA then I'm happy. I had a transvaginal scan on the day of my appointment which was uncomfortable but not as horrendous as a smear test!
The doctor said to me that usually for IVF treatment they will not accept people with a Body Mass Index (BMI) of over 35. Mine is 37. What happens when you are fatter is that your ovarian function is not as good so they advise you to go away, lose some weight and then come back and your chances of conceiving with IVF will be better. Well, I don't have the time for that as I have to crack on with the chemo. They also usually do a blood test when you have your period which determines at what levels your hormones are and then they can top you up to over-stimulate your ovaries. Then once you start your period you have to inject yourself with hormones for 10-14 days and then they go in and take the eggs.
We left the appointment concentrating on getting to Paddington (and having some lunch) but we were both feeling like the doctor had been a bit offish with us and that she'd left the situation very vague as she said she would have to speak to her senior doctors to see whether they would do the IVF anyway.

That afternoon I went down to Cornwall. It was heartbreaking leaving Ash as we have been apart since we got together but not since my diagnosis. The journey was smooth but pretty dull as it was dark and I couldn't see out of the window.
I spent Thursday until the following Wednesday at Mum and Dad's. It was lovely getting fresh air (not that you have a choice, fresh air gets blown INTO you in Cornwall in January!). I did lots of walking and had a proper pasty mmmmm.

I had been waiting for a phone call from Guy's to tell me whether or not they were going to go ahead with the IVF. Nothing. I had coffee on the Thursday with Susie (and Ben) and breakfast on the Friday with Gemma (and Phoebe and Ruby) - both at shockingly early times in the morning! I mean, what normal person is out at 9am!!! Don't they know I'm sick! Anyway, I guess that's what happens when you have kids. It was already mid-morning for them although it was early for me :).

On Friday morning I woke up and my wound was quite painful, red and swollen. The classic signs of infection. After breakfast I put a call in to Jane for some advice. She said to get an emergency appointment at the GP and get on some antibiotics and she booked me in to see her at her Seroma Clinic on Monday.
My GP surgery is BRILLIANT. I got an appointment and saw I think the last doc at the practice that I haven't seen yet (I have a full set now!) and he prescribed me some strong Augmentin which is a penicillin-based antibiotic. All the doctors that I have seen in that surgery have been absolutely brilliant. They are all friendly and even though I have to give everyone the 'story so far' when I go in there they are always patient and understanding. A couple of patients and staff recommended the surgery to me and I am so grateful that I am there while this is all going on. When I think of how rubbish my old GP was I breathe a sigh of relief.

So, I have another infection. Great. I don't feel THAT unwell. I am a bit tired and my right chest sort of aches. It's still uncomfortable to lie on my right side as I would normally when I go to sleep so going to bed isn't much fun as it takes a while to get comfy and fall asleep. Inevitably I wake up with backache too, that is a long-standing problem. Usually I would go
to an osteopath and get them to sort it out but they have to really twist you and move you and I can't take that risk with my arm as I could get a seroma. Jane has sent off a referral to the Pain Clinic at Beckenham Hospital. I know the doctors as they run one of their clinics in the Day Surgery so I although I don't know them that well personally, I feel confident to ask for what I want, which is some acupuncture. I had some before on my back and it was marvellous! (Also I fell asleep on the table I was so relaxed!)

I have been writing this for about 3 days (not constantly of course - I don't type THAT slow!) and more has happened as I had some more appointments. I will update you all in another blog, I'll just let you catch up with the last couple of weeks first.

Love to everyone
Liz
xxx

It's Been A While

Still (d)raining

Hello everyone,

Sorry it's been a while since I blogged. Not a lot has really happened as I have just been at home recovering from the second lot of surgery. I STILL have a drain in although the amount of blood/fluid that is being drained every day is decreasing - just not fast enough for my liking. I cannot WAIT to have this thing taken out. it is uncomfortable and I can't sleep on my right side as I can feel it under my skin - it's difficult to describe but it's like a pressure inside.
Also, it doesn't seem to have stopped raining for AGES!!!

Anyway, on to other news... we have a kitten! Her name is Pandora (nicknames: Pan or Dora the Explorer), she's about 6-7 weeks old, white with tabby patches. Also she's a bit mental!

Update: It's now Monday 14 January. The dreaded drain came out yesterday although I have to admit that it was because I ACCIDENTALLY caught it and it came out! It feels great to have it out and Ash and I went on a hike to Downe village to celebrate. I managed to walk there and back and felt really good (it was about 4.5 miles altogether). We did stop of course for tea and crumpets in the cake shop!

I had two appointments last week, one with the consultant surgeon and one with the Oncologist Dr Harries. Mr Desai said that my tumour had only been a Grade I, of the 9 lymph nodes only 1 was affected so that was removed and none of the blood vessels were affected. Good news all round. He looked at the scars and pronounced that they were healing well. They don't look too bad, when you consider that I have had a breast removed.

My appointment with Dr H wasn't very interesting, he told me that a Grade I in someone so young is unusual as the younger you are the more likely you are to have a more aggressive type of cancer. So that was good news. Trust me to be unusual! In fact I had read (on Wikipedia - the source of all my knowledge!) a list of celebrities that had had breast cancer (including my namesake Betty Ford). It seemed to me when I read it that the people that had had the cancer younger also died younger. That theory was confirmed by Dr H. I hope I don't become one of those statistics.

To be honest I still don't feel as though I am going to die. Even when I was ill with the infection I still just feel groggy. I guess I might change my mind when the chemo kicks in! Yeuch, I am not looking forward to that. I was quite ill on Friday with what I THINK was the virus that's doing the rounds in the UK. The diarrhoea and vomitting one. Ash and I were going over to my brother's flat to watch Star Wars Episode III. When Steve had come over to mine we had only managed the first two films as I was not feeling well (that was just before I was re-admitted to hospital). We got on the train and I didn't feel too good but I thought it was just tiredness. Got off at Penge East and we were walking along and I suddenly had the urge to puke so I did. In someone's garden - hee hee! I called Steve and he just took us straight home. I was sick as a dog for the rest of the night, a little bit wobbly in the morning but after that absolutely fine! Weird.

So, back to the important info. The Oncologist also introduced me to my Chemo Nurse who showed me the cooling caps that they used and the bit of the Chartwell Unit where they do the chemo. Bleugh, I think I'd rather lose my hair than wear those things. For one, they are not AT ALL fashionable and goodness knows, I like hats and some of them even look quite good but these are like helmets with a big coil on the inside that goes all cold and stays cold for 3 HOURS!!!!! I took one look at it and knew immediately that it would give me a migraine. Hmmmm.
At that appointment they also talked to me about having my eggs frozen - basically going through a cycle of IVF. It does involve another operation as they wait for the first day of your period, then you have to inject yourself for two weeks with hormones, then they go in laparoscopically (through your abdomen with a camera) to remove the eggs from your ovaries. NICE! (That was a sarcastic 'nice' by the way!). I don't like hormones anyway. The Pill makes me psychotic and depressed and I am NOT looking forward to this process at all. It's something I am going to do JUST IN CASE. I'm not one of those people who would do anything for a baby but Ash and I have been talking about it and I am seriously thinking about having children (sorry, A CHILD) with him. We'll see what happens. It won't be for a few years anyway, until I am over the whole having cancer thing.

They talked to me about types of chemo too as there are some trials going on at the moment which means that my treatment might not be the traditional way of having chemo. Usually you receive 6 to 8 cycles of treatment which means going into the Chartwell to have chemo drugs injected into you. That happens about every 3 weeks. One of the trials that is happening means that instead of IV (intravenous) drugs you get given the drugs in pill form. And you get them every 2 weeks. This has its benefits because a) you definitely don't lose your hair and b) you get through the chemo quicker. I'm hoping they'll put me on this trial but it is all randomly decided.

I'm off to see Mr D again today to check my wounds and I should have my appointment to the Fertility Clinic at Guys at some point this week too. After that I'm hoping I can get down to Cornwall to visit my mum for a while and take in some of the country and sea air.

All I can say at the moment is that I am feeling MUCH better than I was, I can move around more freely and am starting to feel more like myself. The sun's come out too and I can see blue sky out of my window - that always cheers me up.

Thank you all for your continued support, presents, cards etc. It makes it all easier to bear knowing that there are people out there who care (and who are reading this!). Please feel free to leave any comments, I'd love to hear from you.

Love
Liz
xxx