The Waiting Game

Chemo was fine is the first thing to say. We arrived a bit early despite leaving a bit later than planned. I had a really important form to fill in and post, worrying about how I would feel afterwards, I did it before. They said they were running about 45 minutes late but I think it was longer. The waiting room conversations got to be interesting and helped pass the time, except for the first person who was talking who kept going on about benefit fraud. My fault, I asked how he reclaimed the car parking charges and other expenses he'd just been moaning about. And whilst we're there, I don't think patients should be charged for parking, ANY PATIENTS. My hospital uses a plastic card ejected as you enter the car park, it knows how long I've been there, so how hard could it be to programme a chip to tell the machine I get it for free. Not hard. It could track it is me and impose sanctions if I gave it to someone else. Anyway, we met someone in the waiting room who lives next door to someone I work with, bound to happen I guess. I also saw another colleague who I knew had been in hospital, walking into oncology with 2 sticks. I said hallo but not sure he realised I was leaving after treatment, he didn't want to stop which was fine. I had no idea what was wrong with him, and still don't of course, but good to see he had obviously got there under his own steam. Well I think he had as he was walking from car park to cancer building. 

The infusion went well, veins held up. I have good veins generally but the chemo is toxic so hoping that lasts. There were a number of HUGE syringes containing the different drugs and they go into me via a canula along with saline to dilute and protect my veins. The nurse administering it was great and we all just talked, OH was with me for the first time. I'd expected to feel something straight away but didn't. We went to M&S on the way home to do some impulse food shopping. Not in the budget really but when you struggle to eat, sometimes there need to be some really lovely things to tempt you away from toast and peanut butter or marmite, it isn't exactly your 5 a day. The whole thing took about an hour and we were tucked away in a corner of the chemo suite which was nice. I did sleep when we got back, but think that was probably due to lack of sleep last night. I have antiemetics to start taking tomorrow so responses are clearly always delayed, hoping to avoid nausea but I get sick easily so we shall see. Nurse said nobody escapes the fatigue, and it is a real exhaustion, but it varies when that comes on. Some people are tired straight away and some know they have a few good days before it hits, same people with same condition and drugs react differently. In cancer world I am young and fit so we can only hope the side effects are not too bad. Apparently what happens on the first cycle is likely to be repeated for all the others, although that isn't what has happened to people I know, but it will a template of sorts I guess. I also have to inject myself for 5 days from Tuesday which was a bit of a surprise, but something to increase my white blood cells, so that's good. I was offered a district nurse but I think I can probably manage - I have to pinch an inch on my tummy and inject. 

In other news, now I have short haircut I am rethinking wigs and wondering how greedy I can be. I think in this bit during chemo I will need my long hair. But I like the cut, and think when I got back to work it might be time for a change and will be easier to manage, going to see how I get on with wig lady when the other one comes in. I like this one. 

D Day Eve

First chemo tomorrow and I'm scared, but not as scared as I have been previously, because we saw the professor of oncology on Tuesday and she gave me the answers I needed. I'd got to this point in time understanding what my treatment plan was, and what the chemo is, but not really why my treatment is right for me. We went through all the stats and outcomes for my histology, as a result, I've stopped being angry or upset about it. Looking at the predictor tool the NHS use, my histology presents as quite high risk, primarily because of the grade/stage of the main tumour and lymph node involvement. Whether multiple cancers are an additional risk is not known but ought probably to be considered likely to be. Chemo does nothing to affect the risk of secondary cancers, which is not quite what I thought, it just deals with this lot now. Professor recommended lymph node removal over radiation, which I was thinking already, but said I would need to have radiation to the chest wall for 5 weeks after surgery. I'd thought I'd get to skip radiation if I had lymph nodes removed but it seems not. That will be every day for 5 weeks at a city centre hospital. I am just really hoping I will be able to get an early morning appointment so I can just go to work from there... Obviously it can vary, but the side effects of radiation are mainly sore skin, and I really won't be wanting another 5 weeks off work after all the weeks off for chemo and surgery... Once again we had to hang around after the appointment for something nobody had told us about, it's all important, but we are never able to get an appointment at the start or end of the day so it can fit around work. You can't book in advance for the next appointment so there is always just the middle of the day. OH doesn't have to come to all of them but the ones with the Drs are important for him. People are very understanding at work but with me not working, we really don't want OH to have any problems with his job. Anyway, professor was probably the loveliest most normal person we have seen in all our time, we had a couple of laughs in the appointment which is always nice, and she also had very good shoes. 

Wednesday was a busy day of errands in the city centre and being filmed having a wig fitted. I thought Wednesday morning would be quiet and I expect it was compared to the weekend, but the Apple store was v busy and it took ages to get my new phone battery sorted out (this is important because phone keeps dying when I need to let people know stuff like when they can come and get me). The filming was Cancer Research who are filming people's real life stories to reassure others about getting through cancer. I'm not entirely sure I was who they wanted but everyone was very grateful I'd agreed to being filmed, so much so when they had NO wigs I wanted, they ordered me one which I don't think they normally do. I wanted a spare, and the NHS one will cost £70, as opposed to the £200 I spent on mine. I always knew NHS range would be limited, so no regrets about getting the first one, I also probably wouldn't have got one until after my hair fell out. Since none of the other styles seemed to work, I am getting the same one in a slightly different colour. I think the crew wanted a bit more pathos about hair loss; and I am sure I will mind it when it happens, but the other losses are more significant for me. I spoke about that very fluently outside the filming and they wanted to capture it on film, but wig lady didn't ask me the right question despite 4 prompts and when I just had to say it without a question (think they'd given up on her) I wasn't as fluent at all. We tried on the wig I'd already bought last, mainly because I needed help putting it on, and wig lady was really helpful. Afterwards cameraman said he'd got it framed on camera and it was exactly like it had been meeting me walk in with my own hair so that was nice. I am lucky one worked, it's all you need. Wig lady advised wearing it now and getting used to it so I feel confident when I leave the house so might start doing that soon. It was all as distracting as I had hoped and friend who accompanied me was able to help the people in the Macmillan office whilst she was avoiding being captured on camera. 

Today I was at the hospital early with the lovely registrar at the nice hospital, feel like I know everyone there now. Stitches are out and everything seems to be healing well, hoping the chemo doesn't undo that. Now I am just off for a pre chemo hair cut, from shoulder length to bob, and another walk. This week has been full of friends visiting and help with the garden and daily walks. Nobody is ever going to get me to say that there is anything good about cancer but it is always good to know your friends are the people who are around when you need help, they have been brilliant. It feels like tomorrow is D day, and yesterday I spoke to one person who is fit as a fiddle during chemo, and another who has been in hospital nearly ALL the time with stuff due to low blood count and infections. Here's hoping I'm the former not the latter. 

Update with actual pre chemo haircut. Haven't had it this short for years, but may never grow it as long as it was again ... would never have thought that.

Reality Bites

I don't know what I was thinking about the chemotherapy talk on Thursday but I'd done my reading and I knew what they were going to tell me. We arrived in good time and it wasn't quite clear where we should be so I was lurking by the treatment ward door, not knowing if I should go in. A kind nurse helped me and took me in to sign in, at which point I walked into a bank of very poorly looking people. I walked straight to the desk and gave them my name but I had broken down and was ushered into a side room, my husband being fetched for me along with a cup of tea.

 

I am scared of chemotherapy and it was a shock. Because of where the desk and quiet room were I don't think anyone particularly noticed, last thing I would want poorly people to know is that they upset me, I just wasn't prepared. I was ok after about 15 minutes and it was time for the talk so we went out to join the others in the main waiting area. I got looked after by being taken into the talk room first, which was exactly what I would have been ok walking into. A wall mural of lavender and NHS plastic chairs in rows of various hues of pink and purple. Tea and coffee to hand and cakes. There wasn’t anything very new in the talk, but husband hasn’t done the reading I have so it was useful for him. There were about 6 patients, all with someone, and after the talk we had a 1:1 with the same person who’d given us the talk. One person had little people to collect and they’d looked terrified all through the process, I felt like there was bad news in a young family which was awful. Everyone was chatty, the person that was on his third round (terminal but shrinking tumours type treatment) gave some helpful advice and I was sat behind someone who worked in pastoral care in a school so we had lots of common ground and knew some of the same people.

It’s going to sound like another gripe, and I suppose it is, but the talk was at 2 and we’d been told that it took about an hour. We weren’t told about the 1:1 and seeing all 6 people would have taken the whole afternoon. The person with children to collect went first of course and the rest of us discussed what we all needed to do, so we went second. Husband hadn’t taken the afternoon of work because we hadn’t known so ended up going back v late and working very late. It was all fine, and people understand at work, but this thing about not having any thought for time except that of the health service is difficult to manage sometimes.

In the 1:1 I found out that in my chemo week, I would be seeing my oncologist, having a blood test, and having chemo. All appointments on separate days. Hoping to be able to do the blood test at the GP’s because the hospital is 26 mile round trip. I must just do everything they told me in the talk to avoid being at the hospital any more than that. People can make their own choices about what they do during chemo, but the risk of an infection getting serious is enough for me to know I shall be shrinking my world for now. Infections can also delay treatment and I think going through this till the end of December is quite enough for me. 

I also booked in for a wig fitting and got a number for benefits advice from the Macmillan drop in centre. Apparently they have a crew filming the wig person at my appointment time so I said yes to being filmed which they were v surprised about. They were a bit vague about who it was for, either Channel 4 or a cancer charity. I wasn’t really bothered about being filmed or not but I thought it might be a distraction, we are all about the distractions. I have heard the NHS can access the same wigs that anyone can, but they are cheaper with prescription, and I would like a spare that I don't have to pay £200 for if possible. 

I’m on leave at the moment and it’s been a good week, despite the ups and downs. I’ve only had a couple of days on my own and they were work days. I stopped being too sore to move about on Wednesday, so it’s been a week when could walk most days with a friend. We’ve enjoyed looking at all the new houses they are building in my village. There are notices up by the cricket pavilion protesting another development but I like them. Traffic doesn’t seem to have increased much yet and with more people we might be able to sustain more useful shops and services. Although the archery shop seems to be a destination people come to from far and wide. There must not be many of them!

The Wonders of Genes

Today I filled in a huge big form about family history because there is some and because there is some I have been referred to genetics. They don't always give you an appointment, they sometimes give you the big long form first, but they have me so they must think something about what they know already. Filling in the form, I had to check some stuff out about family history with my family today, and seeing it in black and white was quite hard hitting. It was a bit like the time someone at the Royal Marsden family history clinic asked me if that person was still alive, idiotically it was the first time I had ever considered they might not be. I'm sure you can work this out but I am being vague because the blog is about me and that bit is about someone else. I'm not expecting genetics to be particularly interested in me, there are some criteria, and I think they will punch my data into some kind of predicator tool to see if I meet that. It would just be reassuring in some ways to find out something about ovarian cancer, if there is likely to be a link between the two cancers for me, and to do something about that... 

Stitched & Sore

I was back at hospital today for the wound to be restitched where it had come unstitched. I'd had visions of me in a little room being swabbed with saline, a bit of local anaesthetic and a couple of stitches. It was rather more than that, I was gowned, in decompression socks and covered in monitors and drapes in theatre. I'd been given a 1pm appointment, I'm not driving yet, and there weren't many people around today except OH. When they rang and asked me to come in at 11am, they seemed nonplussed that I didn't know if I could. It all worked out but I didn't know until I asked OH because I didn't know where he was or what he was doing. It quickly became clear that being called in early didn't mean that they were going to see me early or I would be leaving early, so sent OH back to work, good job too as I wasn't out till 3.30pm. I had asked how long it would take, but was given the procedure time, so all the prep and recovery was missed out. I had to wait to be discharged as temperature and heart rate were a bit high but I wasn't bleeding a lot which was what everyone was most worried about. OH came to pick me up when I was ready, stitches out next week, but should be able to drive myself then. It all went v well except they had to move the battered and bruised part of me out of the way quite forcefully to do their work today. I am in post op pain zone now the local has worn off. 

Throw me a lifebelt please...

Today was not a good day, I was feeling scared and low about starting treatment, and couldn't make my mind focus on anything else so have faffed around reading the internet. Then the internet made me angry, or at least what I found out about chemo did. 

I was thinking about my appointment last week with oncology and how little they had told me. We are all different, a friend of mine just wanted to do whatever the doctor said was best to do, I want to know about outcomes and assess the treatment I'm offered. I realised the doctor hadn't give me any of that information last week and I was too preoccupied with being half naked with lots of people in the room to remember to ask. The NHS use a predictor tool which is very easy to use if you know your histology. The graphs below are my predictions with and without chemo, so I was interested to know how little impact chemo has on those stats. 

All the way along, I have said to everyone that I don't want chemo. I knew I would have it if I had to but I would almost do ANYTHING else. The impression I had been given is that at my age, with my histology, it is the best way to prevent secondary cancers. You think you are zapping everything so there's a good chance it is nuked. But no. I was a bit taken about to find out that chemo is indicated in a treatment plan if benefit is > 3-5%. There is no knowing if you will be the 97% that chemo doesn't work for or the 3% that it does. 

As the  doctor points out, you have to take that risk because otherwise you would feel terrible if you got secondary cancer and hadn't tried chemo. I just cant quite believe that there is so little certainty about the use of such toxic treatment, when the impact of the treatment itself can be quite terrible for some people, and can last long afterwards. I can really understand why some people choose not to have it, when that is a very poor chance of either predictability or success imho. There just isn't an alternative... 

Hairy Stuff

One of the things that will definitely happen when I start chemo is that I will lose my hair. I don't think I can bear even the thought of a cold cap and its ice cream headaches. So today we picked up the wig and picture above is me with the wig and brows (see below) on the right and me pre BC with similar length hair on the left.The wig was the first one I tried on so couldn't be bothered to schlep around or have fun with trying on different ones when it looked enough like my hair to me. 

I also went to one of those places that injects things into people's faces to have my eyebrows tattooed. I don't know if I will lose my eyebrows completely but you can't have it done during chemo. It was something I'd considered doing before because my eyebrows are thinning and there's a lot of grey! I'm not someone who would normally inject things into their face and I couldn't justify the cost, but now I can. It might be just appearance but there's not going to be much normal in my life now chemo is starting and I don't want cancer staring back at me every time I look in the mirror. I've got turbans and things for home to be comfy in, not sure how I'll warn the postman. Maybe I'll keep a towel by the door and pretend I've just washed my hair. 

The hair strand eyebrows tattooing was painful, we had to stop a few times, even with a topical anaesthetic cream. It is semi permanent and will fade about 40% in the next few weeks. We've done it so that there will be something there if hair falls out of those follicles, which it hasn't done yet so I've got more prominent brows than I normally have, which is fine. The brow at the inner and outer eye is only hair strand tattoo, there was no hair there at all, and I just think it is really clever. 

We returned to a letter so I have dates for everything now. I have my chemo talk on Thursday this week, see the professor of oncology on the 13th and first chemo on 14th. They do chemo on Thursdays and Fridays, so I'm going to ask if I can do it on Friday. I'm scared of being on my own the next day, husband has had to take a lot of time off to come to things with me, and if I'm v poorly I want the person being at home with me to be my husband. 

Thinking Positively or Not

I know I've been here before in other posts, but the pressure to stay positive increases, apparently I have to do it. Being told I have to do anything is a bit of a pain, after all if I can't am I failing something. If it was you that said it, don't worry (most people have after all) it was what you thought and it might be what you would do. This is just what I think.  

I am very positive about everything in my life, my friends, my job, my home, my husband - not in any particular order. I am not positive about ANYTHING to do with cancer. The treatment is vile, the surgery leaves you maimed, and my whole world has been trashed. I'm not unique, and lots of people have something, but this is my thing. I am losing things that matter to me. The job I love with the team I love, I can't do that any more. The money I earn doing the job I love, I don't have that any more. My hair and my eyebrows, soon I won't have them any more. The toxicity of chemotherapy, that's around the corner, along with the reduction in my immune system that'll be shrinking my world. Oh I could probably think of others, the point is there aren't any gains. 

I think positively about having all of those things back at some point but that is about next April, it's quite a long haul. I'm not very positive about how long this will take, any of those losses, and nor am I someone who can be in denial about secondary cancers. All that pinkification (I hate it in toy shops too by the way) softens the blows of what is a complete conspiracy of silence about how aggressive breast cancer is. They throw the kitchen sink at it because it all gets very frightening if it goes elsewhere, and there is no cure for that. Nobody knows which statistical group I will fall into "Sometimes people with a poor prognosis live for a long time. Equally, breast cancer can come back in people with a seemingly excellent outlook." When this life gets lived again it gets lived with a guillotine over its head. It isn't ever actually all fixed, much as we would like it to be.