Part 12

So 5 years on and a few more operations down the line and life carries on as it tends to do.
After the radiotherapy I was tired for quite a few months. I'd do the school run, come home and sleep most of the day til it was pick up time.
It took quite a long time to get my stamina back, maybe a year. But now I am teaching piano 4 days a week and have been learning Japanese for 2 and a half years. And guess what? My hair is halfway down my back (and been dyed all colours of the rainbow!) And I have been back with Luke for nearly 2 years.

About 6 months after radiotherapy finished I had my tissue expander and port changed to a permanent implant. I was only in hospital a couple of days, but unfortunately more bad experiences of rude nurses. I told them it was not going to go well giving me a blood test and I'd rather they didn't. And when I passed out and they had a whole team round me, putting an oxygen mask on me, I bet they wished they'd listened.

Then about 5 months ago I had the first of 2 operations taking fat from my thighs and putting it in my breast to try and smooth the wrinkled skin where it has contracted. More nurses pushing me to leave barely hours after the op and leaving me to stagger out of the ward not even offering a wheelchair. I was still heavily under the influence of the drugs I'd had. What is happening to the so-called caring profession!

I have not heard from oncology for years and am approaching the end of my tamoxifen meds so I guess I'll have to get in touch with them. After the first year my periods returned so I have been on monthly injections in my thighs since. They sting a bit and make my leg ache but I actually don't mind them too much. They stop my ovaries working so I am now in the menopause and luckily the mild symptoms of hot flushes have passed and don't bother me any more.

The last step in my journey is acceptance of my body as it is now. I still feel ashamed of it and embarrassed and I am struggling to know how to deal with this. I did more charity fund raising by doing a cancer survivors body painting photography shoot. It was nerve wracking getting naked in front of everybody but once I had a dragon painted across my body and breast I felt covered. At one point we ran giggling in to the chapel across the corridor from the church hall where we'd been painted, and posed on the altar for photos wearing just our knickers.

I seem to have become more and more self conscious since then however and still don't really look at my body at all. Councilling failed after a few sessions and then I went into ignore it and don't deal with it mode which has continued for these last few years. But I am now starting to get regularly upset about my body so I think now it has to be addressed and dealt with.

So how am I going to do this? Big question.

Self love of who I am, my body shows my story. May you read it there and know my trials.
Self acceptance of what has happened to me and my inability to change it, life has given me this lesson to make me a strong warrior. I fought. I conquered.
And finally and most importantly I do not need to feel ashamed. I won my battle. It was an epic and painful battle but I fought as valiantly as I could and I survived. Some friends I met along the way didn't.

I vow to wear my battle scars with Pride. Little Blue Dragon transforms into Dragon Warrior and rules the world.

Part 11

Ok, well let's start on the few positives before I go spiraling down into the depths (which won't take very long). So there have been some improvements in the last two months. My PICC line is finally out (I think there will be a small scar, it is very purple still). It was in for about three weeks after my op in the end. I didn't even notice when they took it out as I was looking the other way and mid-conversation. My arm has an almost normal range of movement now after painful daily exercises to stretch all the tendons out, and the bruising has faded and the tenderness gone from my ribs. And I have a full head of very short hair. Ok that is it I'm afraid. The scars are very pink and ugly. I still try to avoid looking at my body. I can't quite put into words the disgust I feel for myself at the moment. I'm feeling pretty low. Somehow I have to get through all the jolities of Xmas and New Year and the cold, depressive winter of loneliness after my brief month of happiness. This whole year seems like one horrible dream. I want to wake up.

It's been about two and a half months since my op. I went back to ballet after five weeks and couldn't keep the smile off my face afterwards. It was so nice to manage more or less a whole class, though the strength and suppleness have gone from my legs, a few months hard work and I will get it back. See, underneath I am a determined young lady!

I'm still in a bit of pain but it is getting easier. My arm doesn't feel quite so much like it has a friction burn running down the back of it, and to the well-meaning people who reach out to squeeze it I no longer have to hide my wince of pain. There will always be a numb patch and I don't know if I will ever get any feeling back in my breast. I always have to be careful of lymphodema (swelling of my arm) and not lift heavy things or massage it with creams, but I guess that will become more automatic as time goes on. They have fully expanded my implant over four sessions and it is now solid, immovable, tight, but a 'c' cup. Each time they did it meant a weekend or more of extreme pain doped up to the eyeballs on every painkiller I had. And I have a lot!

I have finally started on the Tamoxifen after a horrid afternoon going back and forth between the oncologist and the hospital pharmacy trying to find an alternative without lactose in and failing, followed by a painful injection in my tummy that bruised for three weeks that I was meant to have once a month! I'd not slept for more than a few hours each night for three weeks and I broke down in tears at that point. Severe lack of sleep causes such depredation of the mind I wasn't able to cope with anything. The doctor prescribed me sleeping pills and diazepam which sometimes helped and sometimes didn't. Still it gave me a bit of much needed sleep.

Feeling a bit more normal after that, my brain actually began to function again and it dawned on me that there was possibly a liquid form of Tamoxifen without lactose. A bit of research on the internet, a phone call to the doctor and a week for the pharmacy to order it in and I finally had a bottle that would last two weeks. The repeat prescription process was almost disastrous as the doctors didn't hand over the prescription to the pharmacy, so when I popped in after ten days at almost running out point, they didn't even know anything about it. There were frantic phone calls and panic. But the pharmacy were brilliant and sorted it out within two days and I now have a massive carrier bag of eight bottles to see me through four months of my five years.

I haven't noticed any side effects of being menopausal but I have been rather emotional. This is probably mostly due to a certain person who is again no longer in my life. And this time I hope he is out of it permanently. I may have lost my best friend and lover all over again but I can't keep dealing with all the emotional upheaval. It is so very painful though. I had bought some beautiful bras and felt sexy again, snuggly movies, held hands, dinner cooked, long nights and lazy days of intimacy. Now to deal with the hurt all over again, block out the memories.

I have done two weeks of my radiotherapy, one more to go. It is pretty tiring, I'm struggling with one school run let alone two. The kids' Dad now takes them in the mornings so I have enough energy to cook in the evening. The journey to Brighton every day and trying to park and the waiting in the waiting room full of old men and ladies with short or little hair like me is depressing. Yes there are a lot of depressing things in my life at this time. I'm finding it hard to see the happy things because all I want is underneath it all to look normal again.

Radiotherapy. It's all a bit Doctor Who-ish! Green lazers, weird machines. I have to lie very still while they call out numbers and get me into position and then they leave the room. 4 high pitch blasts later (the 2 longer ones being about 20 seconds) they come back, I get dressed and go. It all takes about ten minutes if that. I can't wash using soap or shave my armpits and I have to use a specific moisturiser every day. My skin may look a bit sunburnt by the end but the coconut oil (well I'm not using the E45 or aqueous cream they recommend) seems to be keeping it fairly at bay at the moment. Fabulous stuff.

And finally, now I have got fed up of my wig after 8 months, I can look back on photos of me during chemo and share them with you. I can't believe I looked like that. I still can't believe I look like this now. I just want my hair to grow as quickly as possible. Maybe then I will feel more like a normal person and not one who has had cancer.

 .........

Reading this back at the end of today, I sound very negative. I've had a serious talking to from JJ & Mary. It's really hard at the moment but I am going to make a concerted effort to learn to love myself as I am. It starts now. I can't go on hating myself and wishing I looked different. Life has dealt me this hand and yes its shit, but hey I'm alive and I have a lot to live for. I'm going to have short pixie hair and visible scars for a while but actually it's not forever. "Can you not see that you are still beautiful". Okay I'll say it everyday til I believe it deep down.

Loki

Part 10

This time last week I was just waking up from going under the knife. I was full of morphine, codeine and numerous other drugs after the 3 hour operation. What I would give to feel that numbness of the first few hazy days again, full of blissful sleep and unremembered waking. At the moment I am struggling emotionally and also getting fed up of the pain every time I move. I feel extremely delicate and a bit helpless. I couldn't look at my body for the first week. I was kind of in denial because I knew I would lose it emotionally when I did.

Adjustable implant

I forced myself to look today and I sobbed for hours after. It's messy. My ribs are bruised, my breast is yellow, both scars are bigger than I thought they would be, one where my nipple was and one under my arm. I have 3 big holes from the drains, a lump on my ribs from the port (so they can inject saline into the implant later to expand it) and I'm covered in plasters and dressings surrounded by smeared blood. My body is too tender to get the marker pen off properly too. Not the prettiest of pictures. It hurts pretty much every time I move but I've stopped the painkillers now as anything other than morphine doesn't really do much. I could've easily gotten addicted to it!

My operation was delayed by nearly a week as I had a bad cough and cold to the point where I lost my voice for 3 days. I don't think I was quite ready either so I'm grateful to have been able to have a good skate 2 days before whilst I could. By the time it came round to Monday I was very calm. I went to the hospital by myself and sat and read a book on my ipod inbetween consultations with nurses, the anaesthetist and the surgeons. I met the other surgeon for the first time and he measured me and drew all over me with marker whilst the other 3 stood and watched. At 2pm I was wheeled round to theatre, tears rolling silently down my cheeks, and various drugs injected into my picc line. I had to take my arms out of my hospital gown and lie back down and that was the last I remember.

When I woke I was offered sips of water through a straw and each time promptly passed out again. Eventually I woke for a bit longer and decided I needed the toilet. I had drunk a lot of water up until 11.30am so I wouldn't wake feeling nauseous and it seemed to work. I had even managed a piece of toast at 7.15am. I called as best I could to the nurses standing around chatting amongst themselves and one of them came over saying they would get me a bowl. I refused saying I wanted to sit on the toilet and they replied there weren't any toilets in recovery and that I would have to wait until I got to the ward. She wandered back to the group and resumed chatting. My voice was hardly audible, probably from the tube that had been down my throat, so I waved my good arm as best I could to attract their attention again. I heard comments like “Is she trying to get our attention?” “No I think she's just itching” “Oh no I think she does want something” and eventually a couple of nurses wandered over again. I demanded to be taken to the ward so I could use the toilet. They wheeled me round on the bed and somehow I got up and sat on the toilet, holding my drains full of blood in my hand. The 2 nurses stood there chatting amongst themselves completely oblivious of me. I was desperate but I couldn't go so I asked them to leave, which they did still chatting and squeezing past me. Needless to say I was fine seconds after! This was my only bad experience of the nurses but I found it quite disturbing to have been treated in such an insignificant way.

So anyway, lets continue... I got up onto the bed - I think this may be quite unusual as everyone else I saw didn't move out of their bed until the next day – and then for the next couple of hours 2 lovely nurses spent all their time trying to find my bag which had been sent to a different ward. It had my new laptop, phone, special dairy free food, clothes, toiletries, and debit card in so I was ever so slightly worried at this time! It was pretty late and I couldn't call Maia to say I was okay. My friend JJ always says ask the angels, be specific, and they will help. So I asked please can the nurse bring me my bag within the next 5 minutes. 3 minutes later... It was probably 11pm by this time. I called Maia anyway but she was too sleepy to wake up.

I don't remember much of Tuesday to be honest. Wednesday I tried to cut out the morphine but by the afternoon I was begging for release and had some on top of the codeine. I cried myself to sleep. I cried a lot Thursday too. I had to have daily injections again to prevent blood clots (still suffering from the bruises on my thighs!) and wear constricting stockings until I got home. My blood pressure now has to be taken in my leg as my left arm can never be used for that or have blood taken from it or be massaged (due to the lymph nodes being removed which may cause problems with drainage and result in swelling at any time) and my right arm has the picc line. I'm not sure if its because my calves are quite developed from dancing and skating but I find it very painful most of the time.

I didn't move much really, only to go to the toilet. I had to carry my drains in a bag every time I moved anywhere, even round the bed. I didn't have much coming out of my 3 drains – 75 ml, 75 ml and 60 ml over 3 days, some of my fellow 'inmates' were 160-180 every day, so because it was well under 100 they took them out on Thursday lunchtime. Probably not the best time to take it out right before lunch!

No it wont hurt said the nurses. Well the first 2 didn't really but the third one under my arm had obviously started to mesh with my body and I felt the most painful ripping sensation that I cried out to stop. It took 2 goes before it came out. I lay down and sobbed for the tenth time that day. Lunch sat there for 3 hours. I cried a lot in hospital. It was very tough.

The nurses on the ward were really lovely. They took the time to chat and help you and even gave me a hand and foot massage and painted my finger and toe nails purple to cover up the horrible yellow ridges left from the chemo. The head chef came and spoke to me a couple of times about what food I wanted and prepared me special dishes, and most of the other ladies on the ward were lovely too. There was 5 of us, 3 of them elderly, 1 younger but didn't talk much and 2 of them I felt particularly comfortable with. We would sit on each others beds and chat and listen and encourage each other to do our thrice daily arm exercises. By Wednesday my arm had stiffened up a lot and I had less movement. It is slowly getting easier every few days. A week on and I can just about lift it to horizontal in front of me. There are small, tingly but quite sharp pains in my arm where they have removed my lymph nodes and a numb patch under my arm half way down to my elbow which I think will be there permanently but to a lesser extent.

Maybe I should start a Pharmacy! *

I went home on Friday at 2.30pm armed with lots of painkillers, vitamins, iron, and the most foul tasting antibiotics in the whole world I swear! They left my picc line in but the dressing hanging off – well I wasn't waiting for it to be sorted out when they'd had all day! I just wanted to be home. I'd have to ring the district nurse and wait around on Saturday for her to come and flush it and change the dressing but at that point I didn't care.

So I stand here with a thin covering of hair now growing on my head, my eyebrows thickening up a bit but still no eyelashes, yellow fingernails and toenails, bruised thighs, a tube going into a vein in my right arm all the way to my heart, and a yellow and bruised left side with 2 big scars, a bump protruding from my ribs and a fairly useless left arm at the moment. How the last 6 months has ruined my body! And is trying its hardest to ruin my mind. I'm fighting it all the way but it is getting fucking hard now. 

* (30 Dihydrocodeine, 84 Codeine Phosphate, 120 Tramadol, 84 double strength Ibuprofen, 132 Paracetamol, 63 Cyclizine Hydrochloride plus Iron and Vitamin C) 

Part 9

This week I will be mostly lying in bed in an attempt to avoid the pain in my legs getting too bad. This means planning a list of things to do all at once to avoid unnecessary walking, e.g. if I need lunch what else can I get too? In the meantime I'm watching cartoons, sewing, reading, making braids for my wig, chatting on facebook... I don't want to take too much Tramadol if I can help it. I hate feeling out of it. No kids this week though (they're on holiday with their Dad) so I can take it anytime I need to without having to worry about being able to look after them.

I thought I'd feel more ecstatic from my last chemo yesterday. I feel relieved, yes, but apprehensive about the side effects this week, not being able to sleep properly, the jittery feeling and restlessness from the steroids, the pain in my legs and the horrid taste in my mouth that makes all food taste sour. Still its only for a week or so. And I have rosy cheeks from the steroids which makes me look well. I think I have just got to the point where I am fed up of all this. Four and a half months of chemo, a month of tests before that, three months more with the first operation and probable radiotherapy. That's nine long months. It's like having a baby but it's your own life on the line and not a little baby inside you.

I'm fed up of having to wear a wig or scarf all the time, although some of my body hair and hair on my head is starting to grow but very finely so it scarcely makes much difference at the moment. Still, its a start! And I did manage to keep my eyebrows and upper eyelashes. The bottom ones have mostly fallen out but with a few long ones left in the middle and careful use of thick black eyeliner you can hardly notice. It makes me look pretty much 'normal' with my wig on (even with blue hair!). The only give away that I have been ill is the bandage on my arm. Even then it's hidden if it's cooler and I'm wearing a cardigan. If I pretend there's nothing wrong with me then I feel healthy and its all just a mild inconvenience. I can get on with my life in a more relaxed fashion than I was used to, but maybe my body was telling me I needed to slow down. Ballet, tap, kickboxing, 3 nights skating a week, 3 kids to run around after, 6 miles in school runs a day... something had to give. I will definitely slow down after this. Someone please remind me if I start going overboard again!!

At least I won't have to sit in that horrible enclosed room with bright artificial light and no view out the tiny high up window, sitting opposite lots of people connected up to drips and staring into space or sleeping. It got quite depressing the last few times. It was sad to say goodbye to the lovely nurses though. I gave a few of them a hug. Special mention to Jo who I hope I'll see again at the dance festival next year. Her daughter and my daughter performed this year but sadly I missed being able to go and watch them perform.

So I've had what feels almost like a guardian angel save me from the depths of my worry about the forthcoming operation on 25^th September. Two weeks ago a lovely lady doctor came to my house to sort out some pain relief for me. I was worried about not being able to have much pain relief after the op seeing as I've thrown up on codeine and morphine, but she pointed out that they should have given me anti-sickness drugs. She prescribed Codeine Phosphate & Cyclidine & I was fine on them. This greatly relieved my feelings about the operation along with the fact that after an appointment with the surgeon, my op will be much less severe. My tumour has pretty much shrunk to nothing – I CANNOT FEEL IT AT ALL NOW! This from starting off at 5  x 4 x 3 cm approx. Thank goodness for the change in treatment plan at the beginning! My hair will grow back sooner and I will only have a little scar where my nipple would have been compared to the massive scar from underarm to centre chest and a further op which would have made three in total. I'm going to get a nice flower tattoo later on in place of my nipple. Similar idea to this picture but maybe a hibiscus flower.

Six months after radiotherapy has finished they will give me a permanent reconstruction on both sides so they match. The most difficult decision? B cup or C! (Have to bear in mind the dancing). So I get to take Fyhren to school for his first two weeks, get my birthday party & clubbing bash out the way, relax on my birthday and go in the day after for a five day stint in hospital. Just need to moan about the food on my pre-op assessment and make sure they sort it out properly this time.

I know this time next week I'll be much better rested and all the side effects will have gone. I can start enjoying the rest of the summer with one hurdle out of the way. I made it through chemotherapy, losing my hair, some pain, a little nausea, half a stone weight gain, taste change, heartburn (my fault for forgetting to take my pills for a few days), insomnia, tiredness, a 7 week cough I can't quite shift due to my low immune system, daily injections (9 more to go!!) a PICC line in my arm (I didn't even notice the bandage any more after the first few weeks. People would stop me in the street and ask what I'd done. I'd always be quite surprised and found it hard to know what to say to strangers. I decided on a brief sentence explaining 'its a tube going into my arm which they put my chemotherapy drugs into'. Well if they were going to ask...!) and a couple of extra stays in hospital to finish off... mostly not too bad. My visions of constant nausea and vomiting and sleeping all the time were groundless. You can have a life on chemotherapy. Its hard because yes you are tired if you are on strong drugs, but there is still plenty of fun to be had with friends and going out a bit and children and lots of cuddles from them and notes to say I love you <3 … 

My little cherubs xxx

Part 8

I've come out of isolation feeling slightly crazy. The world feels quite surreal and not right somehow, almost like Wonderland down the rabbit hole. I can't think straight, probably due to a mixture of ongoing pain, morphine drugs, and a completely fucked up sleep pattern for 3 days. Languishing in bed all that time you tend to fall asleep unexpectedly for several hours at a time, wake for while, before suddenly succumbing to tiredness again and falling asleep, on and off for most of the day. Then at night time it continues as sleep deprivation - being woken up every few hours for drips to be attached or for obs to be taken. Incorporate watching bizarre animé films that you can't quite make head or tail of and switch between different realities doesn't exactly help the cause either! The routine goes on, day in day out, so all days seem the same, only varying which doctor comes to see you and the completely different things they say.

I only went in for some stronger pain killers. On Wednesday my legs had started to ache, only a bit at first, but growing worse each day. A deep muscle ache that got more and more painful as I used them more. By Friday I was having trouble walking by late afternoon and was in so much pain by Saturday I phoned the hospital in an emotional state seeing if they could give me something stronger than paracetamol or ibuprofen, which weren't making a dent in the pain relief department any more. They asked me to come in. I wasn't expecting a holiday!

I had to be wheeled to the acute medical unit as by that stage I couldn't walk further than across the room. They took blood from my PICC line and then wanted to take some from my other arm too (on 2 separate occasions) but I refused. I got the PICC line precisely so I didn’t have to have any more needles stuck in my veins and collapse them. My veins are small and I bruise easily. They just had to accept this and I was a bit surprised actually. But then they're getting blood from me anyway. Painlessly. 1-0 to Zoe!

After an examination to test my muscle strength in my arms and legs, arms absolutely fine but legs went into spasms of pain, yes I'm crying at this point. It fucking hurt! They gave me some morphine based painkillers and I lay down and closed my eyes. It made me really sleepy, but didn't really take away the pain. The next thing I know I'm being wheeled round to the ward whilst being told I'm neutropenic again and they need to put me on an antibiotic IV drip. They don't tell you that you have to stay in overnight unless you really push them. I asked if I was going to make the fight night in Hove at 7pm. They just gave me a screwed up mouth, head tilted, shrug of the shoulders look. How about offering the information that I will be checking into Hotel de Worthing? No, better to just wait until it slowly dawns on the patient. Now I'm not stupid (well only some of the time!) so I knew I would miss it. I had been looking forward to it for about a month. I would also miss my daughter's dance exam the following morning. So I'm emotional from lack of sleep since Wednesday night, and in pain, and that just tipped me over the edge, so yes I did start sobbing uncontrollably. I was completely gutted. 1 all!

They took me to a private room. I need to have one as I have to be in isolation away from any infections. Neutropenia is when your neutrophils (a type of white blood cell that fights infections) drop down very low in number. Normally you have around 7500 per cubic millimetre of blood (written as 7.5). Mine was 0.2 (ie 200) and went down further to 0! So anyway I'm confined to 4 walls again with a big sign on the door saying beware or something like that (I didn't really see much of it being on the other side) so all doctors and nurses have to put on sterile gloves and aprons before entering. Well at least I have a nice shower with a seat in the bathroom. Last time I was in a holding room as there was no other spare beds. I had a sink with no plug in the bedroom and a separate toilet and that was it.

The nurse came with lots of forms to fill in. My dad is legally my next of kin so I put his name and number down but said expressly I didn't want him called. I didn't feel they needed to know as I would get the spanish inquisition and I wasn’t in the right frame of mind to deal with it. So the nurse left the room and obviously handed the forms over to another nurse at reception. The next thing I hear is “Can I speak to Mr Andrews please”. I started shouted “What are you doing? You weren't suppose to phone him!” which didn't work so I grabbed my drip on wheels and half ran half hobbled down the corridor yelling and causing a bit of a commotion! Nurses appeared from everywhere. They were speaking to my mum and asked her not to tell my dad but there was hardly any point. I got a text and several e-mails soon after asking lots of questions. Just what I didn't want. More sobbing on my part. 2-1 to them.

The kids' Dad eventually brought in my previously packed bag from a few weeks ago and a take away for me at half 8 by which point I was absolutely starving having only had garlic toast around 11.30am. They gave me more morphine a bit later but it made me feel a bit sick this time and at half 3 in the morning I threw up. They put me on another drip at 4am and by 7am I slowly wandered up to reception for more paracetamol as I just wasn't able to go to sleep with the pain. Breakfast at 8 – a bowl of cereal. No toast – the budget didn't stretch to a toaster apparently.......Yes that's what I thought!! Then several doctors came to see me and said they would continue on the antibiotics and review tomorrow. So that means another night in hospital without actually saying so. Sneaky these doctors!

I slept for a few hours, woke for a few more, falling in and out of sleep very suddenly. When you are pretty much confined to your bed it makes you very lethargic. Not much punctuated the day. Lunch was a special order (seeing as there was, as usual, nothing on the menu I could actually eat, it all being meat, fish or dairy) of the most boring and tasteless salad I have ever eaten in my entire life. Floppy iceberg lettuce, 4 slices of cucumber and a quartered tomato with a few bits of cress. No dressing. Dinner was a jacket potato. No vegetables. It would be fair to say the kitchen staff have absolutely no imagination when it comes to food. They prepare the packet soup and probably packet most other things and dish out this slop to all the ill patients who get fuck all nutrition from it and therefore take much longer to get better. You really are what you eat. If you eat crap you feel crap. If you eat healthy nutritious food you feel energised and well. You get out of it what you put in. They don't even serve decaffeinated tea or coffee or green or herbal tea despite the fact that heart patients in particular are at risk from high blood pressure from caffeine intake. Caffeine contains polyphenols that can bind to iron, making it difficult for our bodies to absorb, so it's also bad for anyone who is anaemic. More on this later... Meanwhile my new friend Ish brought me in some proper food!

I've actually lost track of days, it all being a bit similar. It must have been Sunday night they put me on 2 hourly obs as my blood pressure had been constantly low (yes that's because I normally have low blood pressure!) and an overnight drip of fluids for 10 hours to help it increase. It actually went up so marginally 85 to 89 over about 65 that it was still low and I think they finally accepted this was the case and I was actually fine.

Biology lesson for the day! – the average blood pressure is 120 over 80 which tends to increase as you get older. Although anything above 120 is considered by some to be too high, over 140 means you are at a higher risk of heart attack or stroke. The systolic number is the highest pressure when the heart contracts and the diastolic number is the lowest pressure when it relaxes. You can help lower your blood pressure by exercising more, eating more fruit and veg, cutting down on salt and alcohol and losing weight.

My temperature doesn't vary much from 36.5, my heart rate was no longer tachycardic (fast heart rate of over 100) as it was when I came in, my oxygen saturation which is normally 99-100% (a nurse said last time I was admitted that she had never seen someone with it at 100% before) was 98-99% but I have a bad cough and have decreased my exercise from 25 hours a week to about 1-2 hours a week I estimate. Pretty rubbish really but obviously not a permanent thing!

Monday you could tell I was feeling better (or maybe just completely bored out of my mind) as I changed my own sheets and made my bed, proper corners tucked in and everything! The nurse was quite astonished when she came in. The doctor came in early and said they may try and move me up to the haemotology ward. Hmm that means another night but you can't say it can you!! The haemotologist (a woman) came in around midday and said that I didn't have an infection and apart from extending my GCSF (Granulocyte Colony Stimulating Factor) injections (it stimulates the bone marrow to make white blood cells) and despite having zero immune system, there was no reason for me not to go home as long as I monitored my temperature carefully. They didn't even want to do another blood count since the 0 of the day before. How different is this to last time when at 4.3 (not far off normal) one of the doctors was adamant about keeping me in and was horrified that another doctor had told me I could go home when my levels were 1. The varying opinions of doctors. Hospital might not always be the safest place if your immune system is low.

Well we had lunch to get through first before I went home. And guess what?! Nothing I could eat. I said I couldn't face another salad like yesterday. I was offered an apple or another jacket potato from the kitchen. I declined. I'd already had some cherries I'd brought in as a snack earlier, I wanted something more substantial than fruit and something more variant than a potato. (My other essentials were rice milk, dairy free spread, green tea, a couple of peaches and some grapes). Well the staff went to talk to the ward manager and argued my case. It took quite a while I gather but he did eventually see sense and one of the nurses went to the restaurant bar. They made me the most delicious pasta in a tomato sauce with onions and herbs. Simple but really really tasty. They have put it on my notes as I will have to be admitted again (at least 5 days in September for the first op, and I wouldn't be surprised, though I would like to be, if I wasn't back in before then with neutropenia again). I think I am going to write to the manager of the hospital and point out how dire the situation is. “The numbers of hospital patients becoming malnourished have doubled in three years to a record 13,500”. Does that surprise you? Meals in prison are better nutritionally balanced and prepared and cooked in healthier ways. There is no added salt and food is cooked in the oven rather than frying.

So anyway I'm home, legs recovering enough to walk normally again, a few temporary side effects like an itchy rash on my neck and having to take some gaviscon for a few days, I'm now back to normal and even managed half a ballet class and a late night party til 2am with my first drink (or 6!) in 3 months! Awaiting blood results for 5^th session on Monday hopefully. 3 and a half more weeks and that will be my last one!

Part 7

Charity Update

Emily and co have managed to raise an absolutely spectacular amount of nearly £4000. Emily's Just Giving pages are now closed but the Race for Life page is still open for a while yet if you want to donate at http://www.raceforlifesponsorme.org/the-buckles or Grace & Mel's Just Giving pages. Also the teachers at my son Fyhren's playgroup ran the Race for Life too. Here is their link http://www.raceforlifesponsorme.org/shekinah-angels They have raised nearly £600.

Race for Life

Hair being sent to Little Princesses (wigs for children)

Before

After - I'm the odd 1 out now! (wasn't brave enough to take my wig off!)

Part 6

Chapter 6, in which brave knights turn into cowardly shrews and dragons learn to stick swords in themselves every day...

I am reminded, sometimes on a daily basis, of all those who suffer far more than myself. Of those for whom this illness is terminal, only months left to live - facing the end of their time on this earth - what thoughts go through your head?!, of those for whom it returns and they have to go through all of this over again, as if it wasn't enough the first time round, of those who suffer from pain and depression, and those that even choose to carry on working. I am young and fairly fit and have still managed to carry on some of my lifes loves in short bursts, but sometimes the tiredness takes over and I just have to lay down. There is a limit to what I can do. Could I push myself to do more? Is it in the mind? I feel guilty of my laziness. The tiredness seems to have dragged on more this time. A week in and I feel better today but it's a long busy weekend ahead with festivals and birthdays and kids to entertain during half term.

I have so far given myself 7 injections. My thighs are so sore and bruised I can hardly touch them, but actually sticking a needle in yourself doesn't hurt like you'd think it would. Take a big pinch of skin and fat from your thigh, deep breath and jab it in. Then the ache as you slowly press the plunger in and the sting afterwards. The more you do it in each thigh, the harder it is to find a site to do it. I'm very proud of myself for managing to inject myself anyway (it makes me feel like a true warrior!) and it means the nurses only have to come round once a week. It gives me more freedom and saves them a daily job. I have got to know them quite well and the conversation is changing to become more personal as well as more background details about their job. They are all really nice. I will be seeing them until at least September when I will have my picc line removed (5 weeks after the last chemo) and then it will be the first operation. Five days in hospital in a morphine induced haze, pain, scars, chest drains, numbness, swelling, no skating for possibly months afterwards. The thought secretly terrifies me and I want to cry every time I think about it. The chemo is the easy part. I can deal with this, but I really don't want that operation! I am trying to tell myself it is 3 months off and there is no point spending that whole time worrying about it. I am trying not to think about what a mess my body will be in afterwards. I'm feeling very unfeminine as it is without this impending disfigurement.

My sleeping and appetite have been quite poor for the first week after treatment but are picking up now. I am craving curry all the time (last session it was branflakes), and I have managed to put on a bit of weight. I need to put on at least 5 lbs altogether to be nearer my normal weight. Having had eating issues in the past there is a constant battle in my head of food vs exercise. Food is slowly winning for now. Although I daren't have scales in my house - ever, I am weighed every 3 weeks at the hospital. I have put on a couple of pounds. I feel ashamed. But that's how it will always feel to me. My challenge is to think healthier and fitter and for that I need to be heavier. I have ignored the letter refering me to a dietician saying I am at risk of malnutrition. I'm not anorexic anymore. I am aware of how my body is in reality and not just how it seems in my head. I want to be strong in both mind and body. So I eat. A lot. Mostly because I'm bored. And I exercise. A bit. Mostly because I'm tired.

The weekly flush of my picc line consists of carefully peeling off the clear plaster so as not to pull the line out of my vein, (hurts like hell!) - I normally do that bit. The nurse then opens the stat lock clip that holds it in place and peels that off my arm, swabs with  alcohol cleanser and adhesive remover, counts the dots along the line to check it is still in the same place, changes the swan lock (bung) on the end, puts a new stat lock on and reapplies a new clear dressing over it all. A syringe is attached to the bung and heparin and saline is pumped through the tube to prevent blood clots, sometimes blood is taken too, blood pressure, temperature, pulse, notes written up. It all takes about 45 minutes. Last week I noticed that the line had filled up with blood (it is normally clear) and I had to call the night nurses out to check it. I had a blood clot in it which was a bit worrying and not very pleasant to look at as it came out, but I'm sure most mums have had far worse after they've have a baby!



For the second time my temperature went up to 38 degrees so I had to go straight to the acute medical unit at the hospital for assessment again. Luckily blood tests showed my immune system was fine. It took many hours of waiting but I was sooooo pleased to go home. Emily and I conga-ed out of the ward!! Unfortunately 10 days later my immune system was too low for the next course of chemo. I had another blood test on the Friday and was able to resume Monday. This did mean rearranging childcare, lifts and nurses appointments :( but on the plus side I could enjoy the weekend without feeling ill.

So as far as dragons and shrews go, more death on the battlefield. I will not be treated in such an inconsiderate way. I have enough to deal with. On with this battle!

I have felt absolutely fine after this chemo session. My blood results were up marginally enough to 1.2 (they have to be at least 1). This is the start of a new drug now called Docetaxel for the last 3 of 6 sessions (the previous 3 were FEC100) so the side effects are slightly different but similar. I have to take double the amount of steroids and start the day before treatment at 8am and 2pm so I can sleep at night. (On FEC I had to take them for the following 3 days after treatment just in the morning). Well I was awake all Sunday night and eventually got an hour in between 8 and 9am before I had to set off to the hospital. The drug is administered by a 1 hour drip instead of 4 different syringes but you don't have to wait around for half an hour after you've had the anti sickness injection (which is done into the PICC line) like you do for FEC.

After chatting for a bit I soon flagged, my mind spinning, agitated, my body needing sleep. I lay quietly for about half an hour with my eyes closed waiting for the drip, trying to rest. Sleep was impossible due to the noise of everyone talking but I did manage to calm my mind enough to chat a bit more and carry on for the rest of the day. I think I did a bit of housework which is a first! I fell asleep at 6.30pm and slept until 6.30am feeling much refreshed! No side effects of even slight nausea, lots of energy, no appetite loss (although I have noticed food and water taste a bit funny sometimes and the roof of my mouth is a little sore), but generally I just felt plain normal.

Part 5

I feel like I've come through the hardest part of the treatment for now and moved on to a plateau which will hopefully remain fairly constant for the next three months. I'm getting used to the daily injections and am determined to learn to do it myself very soon. It will mean not having to wait around for the district nurses every day or ask friends to wait in the kitchen while I'm jabbed in alternate thighs. Don't get me wrong, I have my down days. It seems to be about once a week. Partly due to the frustration of being so limited physically I can hardly make it to the end of the road. I used to skate or dance for hours on end. How can I be this incapacitated?! I spend Thursdays at my friends' beach hut having an art afternoon and we lunch at the cafe next door. I love it, even though the weather is always grey and usually rainy when we go, it's the sight of the waves, sometimes calm and serene, sometimes tempestuous and angry. Moods all of its own. And it's okay to be like that I realise. Okay to always not be okay. As long as I keep shining the light of positivity and banish fear I can deal with this.

So it's been ten days now. I'm still not quite used to having no hair. I hate it really, even though what little I do have feels nice to touch. Soft and bristly underneath my fingertips and tingly on my scalp. I wear my wig most of the time except if I'm in my room with the door locked but it gets uncomfortable round my ears after a while and I'm starting to wear my scarf a bit more when no-one is about. Emily shaved it for me last Tuesday evening. I stood there with the scissors in my hand and tried five times to bring the blades together to cut off a lock of my hair. My thumb and forefinger would just not come together. Emily had to take over. The actual act wasn't so bad. A few silent tears rolled down my cheek when the scissors took the first couple of hacks out of my long blue hair, but the shaver felt nice against my head. Kind of like a massage, vibrating against my scalp. So I felt quite calm. I didn't watch though. Better that way. After Emily left, Asa turned up within about half an hour so I had to deal with wearing my wig straight away. He gave me a big hug and thought nothing of it so it was fine, even if I felt a little self-conscious.

My hair had thinned over a few days, not really noticeably but if I brushed my hand over the top of my head I ended up with a bit of hair coming away on my hand. I kept it in a ponytail and didn't brush the top of it from then on. A couple of days later I was sitting in the bath and when I washed myself most of my pubic hair came out and I realised I didn't need to shave my armpits anymore either. The one thing I did have to do was shave my legs though! I'm trying not to touch my eyebrows or eyelashes too much so that hopefully they will stay as long as possible. Mascara is a no no and the odd eyelash has started to come out when I put eyeliner on.

The day following the head shaving I felt pretty low, cancelled a lunch visit. I just couldn't face anyone. I was having a bad wig day! I went to my hairdressers in the evening and got my wig cut which made me feel a bit more confident, so by Thursday for my next chemo I was feeling generally okay about it. I've had quite a few comments from people saying it looks really good. Mum said “Have you not lost your hair yet?” The kids Dad asked if I'd had extensions put in at the hairdressers and then incredulously “Nooooo! Is that your wig?!” when I said I hadn't. Even my hairdresser asked where my wig was when I turned up! I'm still a bit self-conscious. To me it's obvious it's a wig. I don't think I will let anyone apart from Emily see me without a wig on. Even a scarf I can't quite manage yet. I'm sure that will change as I start to get fed up of the uncomfortableness of it. Half a day is alright but it makes the skin by my ears sore after too long. I always wear it around the kids. It is enough for them to deal with without seeing their Mum like that. The boys have been ill with colds and tonsillitis so have been staying with their Dad. My poor parents have had them during the day all week. I haven't really seen them. There is an ache in my heart and a sadness. They are only over the road but the distance seems immense.

They lowered my second dose of chemo drugs. My body had not coped so well with the toxicity of the first. It took a couple of hours of sitting around and only about twenty minutes at most of actually being syringed full of drugs but it was painless and sensation-less and over with for another three weeks. I didn't like being back at the hospital again after the last stint I had there. I felt a little on edge and was glad to get back home.

I had a lovely weekend out in the sunshine in my garden hammock and felt really well, buoyed up by happiness. Very little nausea at all and quite good energy levels. But by Tuesday I felt rough, like I had a cold coming on. I'm hoping it won't lead to hospitalisation again but I've packed my bags just in case and take my temperature every few hours. I need to try and boost my immune system before it depletes to rock bottom. I felt low in spirits that day too. After playing the piano for about an hour I went back to bed and spent most of the day there. Completely unmotivated to do anything.

Wednesday was a busy day. I had a heart scan at 8am at a GP surgery in Lancing. It was a detailed ultrasound of my heart, very much like when you have a baby. You can hear your own heartbeat too. The cardiac specialist said my heart was very healthy and he could tell I was very active. I have to have another one in six months. The chemo drugs can sometimes temporarily affect your heart but mine is fit and strong. Good news number one. After the nurses visit it was back to the hospital for an appointment with the oncology consultant. They had weighed me the previous week. The nurse said I didn't need to take my coat off as I'd just struggled to put it on. My arm is still slightly sore but I can move it pretty much normally now. It's just awkward with the plastic bit on the end of the tube to put long sleeves on. So I had apparently put on two kilos. I think that's about five pounds. In ten days! They weighed me again without my coat on this time. I think I need to have a sort out of my pockets - my coat weighs two kilos!

I went into the consultant and he had a listen to my chest as I have started to cough quite a bit and my throat is sore. He said it sounded fine and to keep an eye on my temperature but I'm confident I won't end up in an isolation ward this time. He said my bone and CT scans were clear so there was no cancer anywhere else and then he measured my tumour and announced that it had halved in size! I was completely amazed. It doesn't feel like it to me. I wasn't sure it had changed in size at all but he was very smiley and pleased with progress. Wow I walked out of there on air. I even did a little run! Good news number two!

Just under two weeks and I will be half way through my chemo sessions :)

Total so far £2635

Please donate if you haven't already. I really admire Emily for doing this and it makes me really happy as we raise more and more to support people in my situation. All the links are top left of this blog.

Part 4

I was starting to feel better and managed a 10 minute walk on Thursday (start of week 2) and 20 minutes on Friday. I was worn out later on though and sent the kids off to their Dad's for dinner whilst I had a nap on the sofa. I woke up with a fever of 38 degrees and shivering. I knew I had to phone the hospital and go in. I assumed they would just give me some antibiotic tablets and I'd be home a few hours later.

Unfortunately I had severe neuropenia which is when the neutrophils (a type of white blood cell) go down below 500 (normally they should be around 6700. Mine were 100!) Anything below 1500 is not good. They put me on intravenous antibiotics immediately, attaching it to my PICC line, and told me I would have to stay in overnight. This turned into 4 days in isolation in a 10x8ft hospital room. I was not allowed to step outside the door. Staff contact was minimal - blood pressure and temperature obs periodically, bloods taken once or twice a day, a saline drip overnight and 3 lots of antibiotic drips a day.

I had no bath or shower, just a sink in the corner, no tv, there was very little food they could offer me if any at all sometimes due to me being a vegetarian with a lactose intolerance and so I had to have food brought in to me from my brilliant friends. Visitors had to wear aprons, disinfect their hands and be illness free. Visiting times were limited to 3 and a half hours in total a day. I was woken at 6am every morning for my drip usually after only having 3 to 5 hours sleep. It drove me slightly crazy after a while looking at the same 4 walls!

After 24 hours my blood count went up from 0.1 to 0.3 and at the end of day 3 it was 4.3 ie 4300. I had my hopes up for going home the next day so my bags were packed by 8.45am! A little premature perhaps. They kept me waiting around all day until 4pm when a nurse said I would have to stay in. I was not in a good state at that time. My mind was set on getting out of there. They let me out of my room and I wandered aimlessly around the 2nd floor until I came to the chapel where my eyes lit up upon seeing a grand piano in the corner! I played for an hour. No one disturbed me so I guess it was ok to do that. It probably saved my sanity!

At 5pm a doctor came and spoke to me. My friend came and rescued me and persuaded them to let me go rather than me having to discharge myself. Without him I would probably have been in there another 2 days. They eventually located the right antibiotic tablets and that night I went back to his and had a break from everything for 24 hours. We danced and played music. He sang and I played keyboard. He took very good care of me and then took me to Emily's. Another episode of Fight Girls down and I went home.

I woke up feeling quite energised. Pretty much like normal, although I know to take it easy now as tiredness creeps up on you fast. I stuck some tunes on and danced round the lounge for a bit and then rested until the nurses came. They flushed my line through with heparin to stop blood clots and changed the dressing. I happened to see the line pull out of my arm by a couple of centimetres and as I bent my arm it went back in again a bit. It freaked me out and I had to lie down as I felt light headed! I'm not good with things like that although I have got to the point where I can watch my blood going into a syringe so I have made some progress. I can move my arm a bit better again now, still have to go easy putting it into coat sleeves etc, but after so much use over the last few days, the site of the line entry is quite sore and bruised now. I have a week for it to settle down until the next dressing change, and then it will be week 3 and round 2 of chemo.

Part 3

Total so far £2390

Having been in a pretty positive frame of mind up until now, last week was tough. It started off bad and got worse. By the end I was so fed up of having needles stuck in me I cried quite a lot and generally felt very sorry for myself. Having said that, thank goodness this is me going through it and not my children. I would be a complete wreck if I had to watch helplessly as they suffered.

Anyway, Monday morning I went to the nurse to have my coil removed as it releases oestrogen and that is the very thing that this cancer is receptive to. The staff at the desk were not at all helpful in getting a doctor to sign my medical exemption form saying I'd have to come back and collect it another time, but bless the nurse for hanging around outside one of the doctors rooms until a patient had left so she could get a quick signature for me. She was brilliant and lovely. Most of the nurses I have come across have been absolutely great, which makes all the shittiness of it all much more bearable.

Later that day it was back to Worthing... I was fine up until the point where the man mumbled and pointed to the hospital gown. “The slit goes up the back”, as he walked off. Not sure I’ve worn one before, at least not in the last 25 years. I sat with my shopping basket of clothes (literally!), shivering as usual from the cold, and a few minutes later I was called in. I had to lie on a bed with a triangular cushion under my knees and they put a blanket over me to warm me up. The lady explained she was going to put a cannula in my arm and give me an injection which would make me feel like I was having a hot flush, there would be a metallic taste at the back of my mouth and my bladder would feel very warm like I needed to go to the toilet. These sensations would pass after 20 or 30 seconds. She used my bruised arm to insert the cannula into and it was really quite painful as it was still very sore from the blood test 11 days before. I had to carefully put my arms over my head and she wound the tube from the cannula round my thumb to hold it in place.

Another scanning machine arched over me. There was a clear band in the middle where I could see something spinning round and round very fast, it reminded me a bit of the inside of a spaceship. I was asked to hold my breath for short periods while they took pictures. I didn't really know what was going on and I started to feel quite strange and a bit spaced out from the fear. I had no idea if they'd given me the injection yet or not but I definitely didn't feel right. Panic can make you feel very strange.

Then I heard the dreaded words “start the injection” in a robotic tone, - just like something out of a scary sci-fi movie! - and a wave of unpleasant warmth flushed over me along with a warm pressure in my bladder and a nasty taste at the back of my throat. It felt like coming up on drugs, a bit rushy and uncomfortable. My brain felt like it couldn’t think clearly. All I could do was experience the overpowering sensations. I’m sure had I not been so panicked, or been prepared a few days in advance of what was going to happen, and if my arm hadn't have been so sore, then maybe it wouldn’t have been such a horrid experience. I was glad to get out of there and get dressed again. I felt like crying but I held back the tears. That night both my arms were so sore and my shoulders and thighs were bruised and aching from roller hockey. I felt I needed to cry to release the stress.

Tuesday wasn't much better. I went in for a PICC line, lay there for about half an hour with a heat pad on me warming up my veins, then another half an hour of watching the lady set up all the equipment, syringes, etc, cleaning my arm, laying a sterile blanket with a hole in to access my veins... Three attempts later I was crying in pain from so many needles being stuck in me. My veins are so small they couldn't get the line in so they had to send me home. Two and a half hours of being very scared, used as a pin cushion and no result at the end. I was so sore by that night I could hardly lift my arms up. Because my veins are so tiny all these needles are painful for me. I coped at the beginning as I was feeling braver then, but my arms got sorer and sorer and the fear has taken over so it has got worse as time has gone on. I have a day off needles tomorrow thank goodness.

Wednesday was wig shopping, by appointment. I walked in, looked at all the wigs and cried again. Getting into a bit of a habit this week! The lady was very lovely and helped me try on a couple of long ones and explained I could dye the human hair ones and get them cut how I like by a hairdresser. I can even put my extensions in them. The fibre ones will tangle and need replacing after a few months and I can't dye them, so the choice was obvious. You get a form for £120 off plus VAT off but it still costs a lot of money for human hair.

So after the failure of plan one, plan two was that I was meant to be going back in on Thursday for another go at the PICC line. Then all being well, start chemo on Friday. I had to chase up the hospital at 4pm as I hadn’t heard from them. They said they had sent an email on Tuesday to the ultrasound team but hadn't heard back from them. I suggested they chase it up and ring me back! Within half an hour I got a call saying to come in at 9am and they would do the PICC line by ultrasound further up my arm where the veins are bigger but deeper, followed by the chemo. So now I am shit scared! But it needs to be started. Plan three - I hope it goes smoothly this time!

Thursday. D-Day! It was a long tiring full on day. 6 hours at Worthing hospital. My angel Kim was with me holding my hand again. I sat in a side room and they warmed my arm up with a heated pillow whilst two ladies hunted around for green tea for me, bringing it back in a polystyrene cup as the ultrasound lady with her Irish lilt made jokes to relax me. She gave me shots of anaesthetic first this time and once the pain of that was over, all I felt was some pushing. She made a small cut on the inside of my upper arm and threaded the line into a vein and up to my neck. At that point, a nurse had to press my ear to my shoulder to cut off the vein to my throat so that the line would follow on to my heart. The whole procedure only took about 30 minutes. It was over very quickly, but then the anaesthetic wore off very quickly too and I felt very light headed. I needed a wheelchair to be taken to x-ray as I couldn't stand very well and my arm was aching like hell. I was bumped up the queue and seen straight away and then back to the chemo ward to wait. The line was in 5cm too far so more waiting for a nurse to come down to the ward and pull it out a bit, retape it in position and back for another x-ray. I kind of wish I hadn't at that point without the dressing on, glanced at the tube going into my arm. It isn't pleasant to see a hole in your arm with a tube coming out if it!

Here it is looking a bit better with a dressing on, despite the dried blood from day 1.

The pain had eased off now and I was able to walk to x-ray for a re-shoot! Everything was in the right place now so it was back to the chemo ward again for bloods, a painless procedure now as they can take it straight from the PICC line, and another wait for results of kidney and liver function and usual obs. They came back fine so they gave me an anti-sickness injection, again into my line, another half hour wait for it to take effect... I even managed a banana and half a sandwich during these waits despite the fact that I was nervous about the ensuing chemo drugs and their effects.

So after all that pain, ache and worry, the chemo itself was just the nurse sitting there for no more than half an hour, injecting various drugs into my line. You can feel a cold flow of fluid along the inside of your arm a bit at first but it was really nothing. We chatted away, and that was it really. They gave me a big bag of drugs (after swapping the gelatine capsules for tasty strawberry melt on the tongue ones) and I walked out of there and went home.

For the next three mornings I have to take four anti-sickness tablets (steroids) and every day of my treatment I take the strawberry one for stomach acid, plus ten days of daily injections in alternate thighs from the district nurse. They sting like hell and I dread them. Every Tuesday they flush my line through with saline to stop it getting blocked and change the dressing on my arm, plus the last Tuesday before my next treatment they will take bloods from it. One telephone consultation booked at some point, but no more hospital for three weeks!

Chemo - Day 5 is the first day I haven't felt sick. The headaches have also lessened. I have felt a bit nauseous every morning until about 11.30 and then by about half nine in the evening I’m ready for bed. I wake several times during the night feeling nauseous but it helps to have my window open and drink lots of water. My energy levels are extremely low. I can manage about 20 minutes of activity, getting food, playing piano, a quick wander round a couple of shops if I get a lift into town (I couldn't manage the 20 minute walk in now), a half hour chat with a friend, and then I need to lie down for several hours. My appetite has gone a bit but I'm now eating lots of vegan potato pies etc I have been given by people or bought as they sustain my energy a bit better. Hoping I will find more energy over the next few weeks and be able to do a bit more. It's not been as bad as I thought so far. I can deal with the tiredness but the nausea wasn't nice even though it was mild. I try not to think how many more weeks and months ahead. 6 months seems unfathomable.

I have had more bad news as my smear test came back abnormal so more indepth tests to follow on that front. Really don't need this anywhere else in my body. At least they will be on top of it but psychologically and physically it just makes this all harder to deal with.

The next big thing I will have to deal with in about 10 days, is of course all my hair falling out...