Wednesday, February 17, 2010

Take it for granted, go on, I dare you.

Have been feeling fine today, maybe not 100% speed, but much much better and feeling pleased with myself for being back up again so soon after a chemo.

Decided to get on my treadmill for a short while, just to try and keep my fitness up to a certain level and was intending only to walk, perhaps with an incline, for 30 minutes or so. But of course, I have to try running. It was the slowest of slow runs (4-5 mph) and only for a few minutes at a time, as my feet did feel a bit odd, so I was trying not to overdo it. But I did. I managed 1 mile in 14mins 30 seconds, which included lots of walking, but I did push it a little further than I ought to and when I stopped I did feel a bit dizzy. Overall, I did 25 minutes, so the other 10 minutes was just walking.

So far, so good, I stopped and rested and was off to the kitchen to get myself some water, when I knocked over a glass as I moved past G (who was playing XBox in the same room as me). It smashed everywhere, and I was feeling way too wobbly still to clear it up, so he did it for me. Meanwhile, I burst into tears and had a good sob. Why?

Frustration that I am not fitter.
Annoyed that I broke a glass (a minor thing in the scheme of things).
Anger that this treatment and illness has made me like this.
But mostly huge anger that so many people take their fitness for granted - take their ability to get fit "if they choose" for granted.

Getting fit is hard work and you have to make yourself do it. And I know, even in my current state, that I could be fitter and slimmer than I am if I really, really tried. But I am being held back at the moment, and it is partly an excuse but also HUGELY a frustration.

I know I need to slow down sometimes, not push myself over my own limits. I also know I need to keep testing thoseS boundaries. Sometimes the test of the boundaries goes too far... but you don't know until you try.

G gets frustrated because I insist on going to work - we nearly had words on Monday night when I told him I was going in on Tuesday, but I did know, and was right, that going to work on Tuesday was the right thing to do. I took it slow, but it made me feel better. It made me feel needed and useful again.

I was wrong to push into a run on the treadmill tonight, it took my few energy reserves too far. But I am right to keep pushing a little bit. It gives me some self respect and reminds me I am alive and will continue to be so for some time to come.

Giving anything up for lent? Not me. I never give up.

Saturday, February 13, 2010

Tax # 2 day by day

And it is Saturday, so we start the countdown to see what the symptoms will be like this time.

Yesterday's treatment went well, in, hooked up through the vein the back of my hand (am now wondering if I have been a little too quick to get a PICC line inserted before I need to... did I say it is booked for 3rd March?). An hour and a half of saline/taxotere/saline and then home.... via picking up G's dad so he can help out with sorting out his house and taking out the kitchen.

So that is what we did today - they took the kitchen out, and I went shopping!! Greg needs new shoes so he can go to his Aunty's funeral in Exeter on Monday both to show his face to family he doesn't see very often, and to support his dad (who, to be honest, doesn't sound like he likes his remaining brothers and sisters very much, with the exception of one pair!). I am not planning on going, as I felt really lethargic last time by the monday, so I don't think I would be up to it.

I had an idea today - I have been on a high steroid dose since Thursday, which aim to prevent an allergic reaction to the taxotere and put you on a bit of a high. That prescription is complete now, so none planned for tomorrow. However, I have a few left over from a previous prescription, so maybe I could wean myself off them over the next two days and my expected 'crash' tomorrow won't be so hard? So I phoned Velindre to speak to the chemo nurse, who checked with the doctor, and they wouldn't advise it. Bum. I thought it was a brilliant idea... but I shan't go against their advice. I have a meeting on Tuesday afternoon, so I am really hoping I will be well enough by then to drive to Bristol and back, even if I take the morning off and take it slowly.

I forgot to take my Neulasta injection on time today - it has to be at least 24 hours after the chemo, but in fact was about 31 hours afterwards, but it is done now. G nagged me!!! I had meant to take it to G's house and do it there, but forgot. I will now expect a few slight aches from that, but at least it is boosting my white cell count each time!

Only two more chemos to go!!! The count down is SERIOUSLY on!!!!

Sunday - Was on a steroid high this morning, so cleaned the house. G and his dad toodled off to Exeter via Gloucester, so I have chilled out this afternoon and watched the entire series of Glee online. I kinda see why people like it. I loved the dancing at the football game. But essentially, it is just nice to have a TV series that is happy and light, and not doom and gloom. But it is a bit candyfloss. Will I carry on watching the rest? Probably, but not when Greg is looking.... ;-)

About 8.30pm and I have started to feel rough again, just a slight headache and fuzzy mouth starting, plus extra farts and hot and cold again. I have a blanket, on, off, on, off, on, off.... Didn't sleep brilliantly, so I have now taken some Hedex and a sleeping tablet, and hope that that (plus having the bed to myself) will mean I get a good night. I am not expecting or planning to go to work tomorrow. But maybe Tuesday I will.

Tuesday - had yesterday off work and pottered about. Today, I went into work. Very slowly, teetered into the office, caught up with some emails and went to a meeting about "Libraries of the Future". I didn't stay late as I didn't want to get stuck in Bristol traffic, but I did also do the weekly shop (slowly) and went home and cooked G some savoury pancakes... which he didn't like! Well, he was polite about it as I complain that he seems to hate everything I cook. To be honest, I have been in a grump as I feel like I still do everything around the house except the cooking. And I told him so. He is blaming my up and down hormones, I am just blaming tiredness and still having to do everything.... sigh. I am fairly impossible to please, as I want to be as independent as possible, but something simple like clearing up last night's take away would have kept me calm....

Took some photos yesterday of my hair/no hair situation: Slideshow

Wednesday, February 10, 2010

Needle week

I think I shall call this needle week.

Yesterday, after my whirlwind 'consultation' with the oncologist, I then went to the GP's nurse to get my monthly Zoladex injecton. Dr Iqbal had verbally agreed that I could have the 3-monthly dose this time, so I was given that (just a little yelp from me, as the nurse popped that into my tummy!). We had a nice chat and I happened to mention that my cervical smear was also due - I'd received a letter the previous morning. "Want me to do that now?" she asked? Yes, if it saves me another trip! So we got it sorted. Fingers crossed that will be as clear as all the others I have ever had... She also checked my puff for the asthma inhaler I have (good), my weight (not good, but she wasn't worried), and my blood pressure - which is back down again after the other week. 129/80.

Needle count so far this week = 2 (and a speculum).

Today, I went to Velindre to have my first Herceptin. I arrived 15 minutes before my appointment time, as it said to do on the leaflet, and then was ignored for 45 minutes. Hhmmm. However, once I had signed the various permission forms and spoken to the ward doctor (Dr Courtney), who couldn't answer the one question I had, then treatment began.

My left hand vein was playing ball, so nurse Shelley was able to put a cannula in the usual spot without too much fuss. These nurses are very experienced at this. Then a saline drip initially, and then the small bag of Herceptin. It took about 1.5 hours for that to infuse into me, and then they set a timer to leave me for two hours in case I had an allergic reaction. At frequent intervals they took my blood pressure (reassuringly, it was around 123/80 every time) and temperature (normal). At 3pm, Greg came back from his exploration of the Barry and Cardiff area and we went home! Where we have both fallen asleep on the sofa for a short while!!

Needle count is now 3 for the week and I have chemo to come on Friday...

On the work front, there has been a lot going on. It has been decided that the library where I work, which is run by the University, will be taken over by the College it is based in. This means all the staff will be TUPE'd over at the end of April. This was announced on Monday, so I feel bad that I have not been around since then to be someone for them to talk to, but sadly I couldn't do anything about that. I have been invited to apply for a position at the university, which I will do, so it is likely I will not stay at the college longer term. This is frustrating in many ways, as I love the college, love the team, love the potential opportunities there. But because of my health situation, I need to choose the best option for me. One colleague commented that she feels she has been "sold down the river"... I can assure them that people in our department's management, or other senior bods at the College didn't want this, but the very highest decided upon it so there is no choice. Change is always difficult, but we'll have to work through it together and I know the team will do everything they can to ensure the students don't suffer.

I know a couple of my colleagues read this, so all I can say is, lets focus on getting through the change (there is a lot of detail and untangling to do) and see how we can keep things going and make it as positive an experience as possible. It doesn't rain but it pours, eh?

Tuesday, February 9, 2010

NEXT!!!

Had the usual clinic today. Arrived at 9am to queue and get blood tested - there was a 1 hour wait instead of the usual 10-15 minutes. I went along to outpatients to let them know I was there for my clinic appointment which was due at 10:40 and was informed, eventually, that there was a delay of about an hour. I got to see Dr Iqbal at 12:25 for all of about 3 minutes.

Him - "How many Taxotere's have you had?"
Me - "Err, one"
Him - "And how did it make you feel?"
Me - "More tired, more mouth ulcers, more disturbed sleep, some aches"
Him - scribble, scribble on a prescription sheet.
Him - "Did we give you neulasta last time?"
Me - "Yes, and I'd like to administer it myself again, please" and I handed over the right bit of paperwork.
Him - scribble, scribble. Michelle mutters that they were supposed to have a Registrar to help with the clinic, but it doesn't look like they are going to get one again for a while...
Him - "Do you have your steroids ready to take from this Thursday?"
Me - "Yes"
Michelle hands over my blood form for next time and I am ushered out of the room.

I was going to mention that my feet ache a bit (although I am not sure if this is due to my usual high-heeled shoes).
I was going to ask what to expect tomorrow when I start the Herceptin.
I was going to ask whether I can have complementary therapies and what to avoid (I know that massages that de-tox you are not recommended and many therapists just don't want to touch you, due to the lack of lymph nodes). I'd quite like to get something to ease my tense shoulders. A colleague at work has had cranial osteopathy and it sounded lovely...
I had also forgotten myself, but I wanted to ask for my MUGA heart scan result. Boo.

As a parting shot as I was leaving, he said "You are having radiotherapy after the chemo!". "I know!" I responded. Maybe we'll talk more about it next time....

Monday, February 8, 2010

Working

I have been reading threads about women with breast cancer who have had months and months off work and a phased return when they do go back. I know there are plenty who are like me and do continue to work throughout, but we seem more unusual. Am I just really fortunate to be able to carry on working? Am I just having much, much fewer side effects than most? I don't think I am pushing myself more than anyone else as for 2 weeks out of three I feel absolutely normal.

Working keeps me feeling normal. I don't want breast cancer to take me out of my normal life so far that I feel too 'special' or different. I don't want to leave the workplace and feel scared about going back. I need to feel I am doing something useful with my life.

A colleague at work today said that this blog had been helpful for her to understand something that is so often swept under the carpet, hidden away. Cancer patients often get diagnosed and disappear. Me being at work and continuing to live my life has opened up a whole secret world! I do hope that this blog is helping other people to understand what goes on and perhaps be less afraid should something similar happen to them. But of course, I sincerely hope it doesn't happen to you or anyone close to you.

Tomorrow, clinic and more zoladex, then project planning...

Sunday, February 7, 2010

Bye bye Luke

I realise it has been a few days since I've updated, but thats cos I have been busy with work and socialising!

Yesterday, we went out to a 21st birthday party in Symonds Yat. It was Levi's 21st - he with the brothers named Bjorn and Remi. Their mum clearly wanted them to be unique at school! Levi is Luke's cousin, and Luke is Greg's best mate. This morning Luke is on a train to Bassingbourne to start his training as a soldier. He is a fully trained mechanic, but is bored with fixing cars so thought he would turn his hand to tanks instead!!! Lots of the blokes were in tears last night as Luke is sometimes brash and upfront, but is also honest, loyal, energetic and funny. If you ask my neices, he comes from a planet far away and arrives at our camping weekends by spaceship. He has only gone to basic training, so we'll see him in only a few weeks time, and again when he 'passes out' and it will be interesting to see how he has changed. I suspect Greg's photography hobby is going to take over for a few weeks now.

Yesterday we also started sorting out Greg's house. A new kitchen has been ordered a few weeks ago, so we emptied the old one in preparation for taking it out next weekend. G's dad has been ordered to come up and help out (which he loves doing) so I shall be going to pick him up on Friday, and G will take him home on Sunday in time for his Auntie's funeral on the Monday. I shan't be able to go to it, as I suspect I won't be feeling well enough by then - next Chemo is next Friday.

There was more socialising last Friday night, with a last minute arrangement to have a few drinks and food with a friend and her new bloke. I won't name names, to protect the innocent, but I will say that I had a few glasses of wine, hope that I didn't say anything I shouldn't, that my friend is looking very lovely these days (not that she hasn't always!), and her new bloke seems to be great fun - but she does seem to have a knack of getting together with the 'complicated' ones!

I had meant to blog about the heart scan that I had last Thursday too, but forgot to! Anyway, it was another MUGA heart scan so I've blogged about the first one I had so won't go through the detail again. It was all quite straightforward, with the nurses in the Nuclear Medicine Unit remembering me because of my address - everyone thinks Cornpoppy Avenue is such a pretty name. Such a disappointment that it doesn't have gardens full of poppies and roses, or pretty little cottages, and just boring new housing estate homes. I imagine I will get the results next Tuesday at clinic.

Work last week was all fine. We have some news coming next Monday about our future at the College, so I'll tell you about that next week. I was feeling mostly full of energy, except for one day where I was a bit tired and had rubbed my eye after stroking the cat, so looked like I'd been given a thump! Nicely swollen! I'm allergic to my 3 cats, in case you didn't know. And no, I am not getting rid of them!

Today (Sunday) I just have the house to clean and my major task will be to find homes for all of the stuff we brought back from Greg's house yesterday. I may have to have a clear out to make some space...