2011 7th January - Appointments

I usually hate my birthday, Christmas & New Year are just times to be endured but last year things changed. Partly because of a responsibility to all those I care about, I wanted things to be special, partly because I, finally, wanted them to be special too. "Just in case it's the last one", or the last one I'm really up to.

I've been really weepy since I left hospital, nearly a month ago. I can cry at anything on the TV, the radio, reading books, random thoughts. Any mention of death, cancer are obvious triggers. Normally I'd think this meant I was depressed - certainly one of the signs previously. I don't feel depressed though, I should know, I've spent most of my life trying to live without or living with anti depressants. Am I still in shock about everything, or is it all just sinking in? Things are so much better than being on chemo. I'm feeling more like myself, my new, changed yet again self and the impending return to poison isn't thrilling me at all, but it's been nice to have this time off a quarter way through to remind me how I'll feel after it's finished.

My mum was supposed to be coming over to stay nearby over Christmas but her car died, the snow arrived and just spoiled those plans.

Christmas day I ate (everything) lunch at my sister's and drove for the first time since surgery, not quite 3 weeks after, naughty but it's only a 5 minute drive and it was alright.

Boxing day the kids arrived late morning and we just watched TV, a film, played connect four and ate nibbles, chocolates and crispy duck pancakes. I'd bought fizzy drinks for the first time in I don't know how long (they're super acidic so banned from my diet - the easiest thing to avoid especially when you have a stoma) and lots of cheese for Karys who loves cheese. For Christmas, apart from the turkey and bacon wrapped sausage, my biggest treat was drinking the bottle of wine I'd had in my kitchen for months and eating whatever I wanted. To be honest, in the scheme of things I think my diet was still 60/40 "on the list" and the pleasure I got from eating cheese on crackers with a small glass of red made me giggle.

Just having the kids in the same room makes me feel alive and well, it will never happen enough, it can't, they're teenagers, Karys turns 18 on Tuesday. I am so happy they want to spend time with me, that they are happy in my company makes me want to cry (I don't, not until they've gone). Karys stayed the night and I took her to her boyfriends later the next day after we went into town for a bit of shopping and a Nero's coffee (I asked for Soy Chai Latte, but got a coffee made with soy instead, still drank it). When I got home after two days with them being in the house it wasn't so bad, but the next day was pretty miserable and lonely. It only lasted a day though and I always know I'll see them again soon, and they're there, they're happy.

My son was 16 on New Year's Eve and he said he might try and come round for a bit but, as I half expected he changed his mind to seeing me the next day, which worked out better as he wasn't in a rush to then go and meet his friends to go to a party. He managed to leave his (christmas present from me) phone in the taxi so for 3 hours after the time he'd said he'd want picking up, I heard nothing. After 2 hours of no reply to my text I rang. Then I spent an hour feeling sick and pushing thoughts of "New Year Tragedy" headlines out of my brain and actually hoped he'd lost his phone which would be crap because it was expensive, and I bought it, but the very least of any evils. Luckily his dad had my house number and he finally rang. I can't tell you the relief at that phone call. He managed to escape from my main road flat "to go and wait by Daddy's car" when he was about 3 once when his dad came to fetch them after the weekend. I was literally on the point of vomiting at the thought of what could have happened to him when we found him a few yards down the road stood patiently waiting by a different red car. Horrible, horrible losing a child for even a few minutes.

So I had my boy for another few precious hours all to myself. I bought him a watch that he'd picked out a couple of months before. It's so strange seeing the size of him and rem embering the little boy he used to be, seeing his humour develop. He's always had a very dry sense of humour that often adults would miss, which used to make me more proud that he fooled them with his precociousness.

One of my friends, a fellow Bum Bandit, posted on Facebook about her friend's daughter who went missing mid December aged 14. She had no press coverage other than local London news, it all went to the sadly deceased Jo Yeates. Thankfully she (Serena Breakhurst) turned up this week safe and is back with her family. It has been rumoured it was the amount of reposting on Twitter that finally led to her return. There's been more publicity since she was found? How does that work? I hope they had a late Christmas day to replace the misery they must have endured.

I had friends and their daughter over one night and my mum and her husband came over eventually on 2nd January in the new car. There's been a steady trickle of visitors with no huge gaps of lonely days and nights inbetween.

This week I had a check up with stoma nurse on Tuesday - have yet another bag to try which I'm rather liking now things have healed and Fatty has shrunk down a lot! There won't be any follow up planned appointments, unless I need them. I forgot to ask about flushing the leftover waste in my descending colon though........doh! More on that later. The taxi firm called me to let me know the driver had dropped Phoenix's phone in so I could pick it up. Not being able to get hold of my son (I don't ring his house as there is no communication now between me and their father, too many bad things said) I decided to pick it up, and risk knocking on the door hoping he'd be at home on his last day of holidays. He was. I totally forgot that I'd taken the plunge and worn my wig for the first time and realised that might be the reason for the slight smile on his face. I mentioned it, he said it looked alright and liked my coat. I think it does look alright, it just doesnt' look like my hair ever did which is the strangest things. It feels like wearing a hat so I forget, my head is so warm.

There were a few bits I needed so I went to Morrisons and had an all day meat free breakfast and took my time over it then did a mini shop. I don't think anyone stared. I got home at 4.30pm after leaving at 10am, tired but feeling like I'd spent a normal day, no breakthrough pain which was a real triumph. I'm not sure now if Dr Tom is right and that after the internal swelling has gone down around the fistula, that maybe the pain was something to do with it, or my J-pouch. Either way I'll take it. Maybe this means I can get off the patches one day?

Wednesday I just read in bed, resting for the evening ahead and the day before. I was picked up and spent a few hours with the friends who'd visited before Christmas. Their daughter is ON all the time, she's just full of life and good at everything and lovely and funny. Tiring to be in her company for someone like me, but also her enthusiasm rubs off on you.

Thursday - GP appointment for a sick note, mention the cystitis, ask about a flu jab. I was an hour late. So many of my appointments have been 10.30 lately I just mixed it up. The receptionist was really good and tagged me onto the end of surgery, since technically I probably hadn't slowed things down, just rearranged the order, I was SO relieved! I went back two hours later - my second day in the wig. Dr was sympathetic, reading the recent letters from hospital detailing how after admission through A&E I was "too ill and unable to face surgery, so sent home to rest and to be readmitted...". He commented I'd not had a very easy time of things over the holidays and cue tears again. I told him I was pretty sure I have cystitis again (since the dilatation never lasts more than a couple of months). Again he didn't bat an eyelid at my cheeky self diagnosis, they never have done at this surgery. He just checked the symptoms I have and gave me a prescription, a drug I've had before. I told him the contents of my descending colon, which can be flushed by my stoma nurses (inserting a tube into my stoma) seemed to be making signs of moving on their own. The sooner the better for me, having waste coming out of three places, none of which I have any control over. At least I know this bit is finite, but it's still distressing, just more manageable and less painful. He said the antibiotics might speed that up, since they get into my blood stream it might be a "Brucie Bonus". You can't beat a Dr with a sense of humour. I asked about the flu jab and he said to ask at reception but the nurse was in.

The nurse was lovely, she double checked that it would be OK since I'm about to start antibiotics. Given my particular situation Dr said this was alright. We had a chat for a while after the injection, just about scarves and hood/scarves with pockets. She started to say "Is your hair...." I didn't wait for the rest of the question, but shook my head and said "No, it is a wig". She said she really wasn't sure even close up because of all the colours in it. Part of the reason for getting a Noriko wig is because of the mixed colours, red, blonde and brown - similar colours to ones I've had before in my own hair. She thinks it's beautiful. I do like it, it's not how my own hair behaves, i.e. it retains a kink, it's thicker and "bigger" than my hair ever can be, but she thought it looked like I'd just come from the hairdressers because they always blow dry her hair bigger than she can get it.

I came home feeling almost teary that everyone was just so "nice". I don't expect people to be horrible, but there was just a much higher level of kindness than was even necessary. I'd like to think it has something to do with my own attitude. I mean the GP and nurse could just have been extra nice because of my shitty situation, but the receptionist? She's not the smiliest of the three I've met, but I wasn't rude, obviously, just explained that I'd not made the appointment myself and one of us must have misheard. I saw her on my way out after my appointment and made a point of thanking her again, she asked if the Dr had been OK seeing me as an "extra". It makes up for the appalling bedside manner of the idiot doctors in hospital.

Today it was yet another trip out (so that's four outings in four days) to have my PICC line flushed. I've been feeling pretty tired this week, because I'm doing more I hope, so although my head is quite awake, and sharper than it was during chemo and post surgery, my body is tired and slightly achey everywhere. I went to bed at 10 and read for a bit, sobbing at the book's harsh twist near the end (told you, I cry at anything). The book mirrors a friendship I have with someone in a lot of ways which didn't help, but it gave me a different outlook on things which is what I like to get from anything I invest a few hours in, if at all possible. I didn't wake up until 11, so I think that's about 11 hours sleep!

Jasper was on form today as usual in the haematology suite (next door to chemo suite where they do blood and flushes). He was again disappointed that I was alone since twice I've taken "lovely young ladies" with me and have set the bar. He's always got an anecdote which probably makes a relatively short job of undressing/flushing/dressing my line a minute or two longer, but makes the whole experience even more worthwhile. I told him, I know I can get the district nurse to do it if I ask, but why would I when I can go there instead? It gets me out of the house once a week, chemo or not! He didn't comment on my wig at all, even in a whisper, and as I walked past reception, Maria said "Hello Lisa" so I went back, surprised she'd recognised me because I think I look so different.

After hospital, as planned I got my usual free parking space, next to the (not free) car park, not even needing my blue badge close to town. I sat in Neros for over an hour over a Chai Soy Latte and Veggie Panini. A couple of people looked at me longer than I thought necessary through the window (can't people watch if you don't sit by the window) but mostly I forget I'm wearing a wig. It's very warm which means I don't think I'll have reason to buy the lovely fur trimmed trapper hat I've found on Boohoo's website :o( Gutted! However, it does save me some time in getting ready, I can just roll out of bed, into the shower. Even though I change my bag when I have a shower, on those days I've got it down so fast now the pain and swelling is gone, that's quicker than washing and drying what little hair I have.

Next week I have made an appointment to see my oncologist, since nobody else saw fit to plan one. Part of me wants to just forget about it, carry on as I am feeling good and pottering about. The sensible part says, you made the decision to have chemo and see if it shrinks the tumours, so see it through, don't be a quitter. Although I wouldn't say I have anything resembling an appetite, I have forced myself to be aware of times when I think I could eat something, outside of mealtimes. So far, although I put on a few pounds over Christmas (cheese and chocolate) which have gone again, I've stayed level at around 130lbs (59kg, 9st 4lbs). Chemo isn't going to control me this time and there was talk of putting me on Neupogen straight away to keep my white cells up, hopefully stop any delays in finishing and just crack on with it, get it out of the way. I don't know if I'll have a scan after 3 doses, making it halfway through, given my long break. I hope so. I'd really like to know if there's been any change.

The biggest change has been inside my head. I'm so grateful for any time spent with friends and family, but I'm not impatient to see anyone. I'm quite content being at home and have got some kind of loose routine - don't stay in bed later than 10 (usually up till 2am reading or watching TV) get dressed at least half the week, put make up on if I go out, even if only to the surgery. Yoga every day if possible, unless I'm walking a lot, no more than 2 days off regardless of how tired I am. Sometimes I just do a routine for bedtime yoga which is very sedate but those stretches ARE making a difference, I can feel it in my legs particularly. I've made the decision to quit my job when my sick pay ends. My GP discussed this too - making sure I am not missing out on anything, but as I told him, my employer isn't nice, he only gives me the minimum legal requirement of £79.15 a week and no more. My last company paid full pay for 6 months, half pay for the rest of my time off - for 14 months in total, with a slow return to work planned by a third party at my pace and subsidised with the half pay still, regular review on how I was coping. I don't feel I owe my current boss a thing. He has no compassion and I have lost all respect for him. There is no way on this earth I shall sit in that showroom office alone, just to make his life easier. There isn't any hot water on the premises yet, though he did buy a hot water heater it never got fitted. The breakthrough pain caused by sitting upright in an office chair is reason enough never to work in an office again. This will affect my income but I'll sell my house for a smaller one when the time comes if things become too hard. I might even sell it, put things in storage and go travelling for a few weeks after chemo, who knows. I'm in the enviable position of having 60% equity and a very saleable detached house overlooking fields so I think it will sell quickly. But for now, I love the peace, the huge living room and my conservatory.

So that's what I've been up to, doesn't sound like a lot, but then it's only been a month since surgery hasn't it?

I hope my fellow blog friends are improving, healing (Carole), or at least managing to get through (Tony being on Irene). Sorry I've been quiet, it was really just because I've been busy doing stuff, but I do like to keep a record for myself - it helps to read back over what's happened just to see how well I've done or remind myself things will get better again in the bad patches.

Happy 2011