29th July - 2 weeks after 5th chemo

The 5th chemotherapy session was horrid. The smells and anticipation of being ill are really nasty.

I had signed up to help on this Autumn's Alpha course at church, and there was a meeting about it on the Thursday evening before Friday's treatment - so I asked some friends to pray for me that I wouldn't suffer any side effects from the chemo this time.

Mum and Dad came to visit at the weekend and, determined that God would answer my prayer, I helped Him out a bit by trying really hard to ignore the side effects, keeping incredibly busy and distracted through the weekend!!!! There was actually some benefit in distraction activities, plus I was given even more stomach settling drugs to try - ones that temper stomach acid.

I rather overdid it nonetheless, and was wiped out all of Monday, shaky Tuesday, and needed lots of rests through the week. On Tuesday evening it was the end of year party for school staff, and I went along - but was quite tired. I got bitten by a gnat or something, and, ridiculously, it blew up into an infection for which I needed antibiotics. That's the first time during chemotherapy that I've really realised how delicate I am. Resolve to pamper self a bit more - and buy insect repellant!

Unfortunately I didn't get all the rest I needed because it was end of term week, and, planning to return in September part time, I needed to go into school quite a lot, to sort out my classroom, meet the children I'm teaching, and begin to make plans to return.

After spending all of Friday cleaning and rearranging my classroom I had really overdone things and become exhausted again. So on Saturday I was really run down, my calves were ridiculously painful ever since the gnat bite - it felt like the horrid tight ache/cramp you get after serious cycling.. I wonder if it had anything to do with the bite. Whatever it was, it made me tired and squeaky. So instead of resting, I decided it would be just the thing to go strawberry and fruit picking with the children. We came home laden with strawberries, raspberries, blackcurrants, gooseberries, cauliflower and cabbages. Then the children were challenged to research and make a dish with whatever they had picked. This involved buying rather a lot of cream, chocolate and cheese!

On Sunday things were good and we spent a lovely long day out on the Isle of Wight on the boat. The children had a great time independently buzzing around the harbour in the dinghy - and playing in the sea and sunbathing.

Having done the driving both ways on Sunday, I was again exhausted and did nothing (pyjama day) on Monday. I worked non stop around the house and garden on Tuesday, hauled a trailer load of ivy and garden waste to the tip, did nothing again on Wednesday and worked hard again today, packing the trailer for our camping holiday to New Wine on Saturday. (www.new-wine.org/summer)

So it goes on. Consistency and pacing myself is really difficult because when I am exhausted I build such a long list of what needs to be done as soon as I have enough energy. So I go non stop when I can in order to try and catch up. Trouble is - the family suffers my rollercoaster expectations - one day I'm laid back and let them slob around in pyjamas just like me, the next, I'm banning them from using laptops and watching tv, and giving them strict orders to wash this, tidy that, mend this, sort that, pack this, help with that, etc.

About healing:

My scar area still puffs up with lymphoedema, so I'm applying strips of kinesiology tape in ever more intricate patterns across my chest and down my torso - looks like Maori tattoos!

I am very relieved to note that the tight 'strings' or cords in my armpit and elbow have seemed to have gone almost completely and I have a better range of movement in my right arm. Now it is more obvious that there is a thickening of tissue all over my right chest and underarm which often aches in spasms, and is restricting my arm from the full range of movements that my left arm can do. I need to work hard at daily stretching out my arm and forcing that tissue to ease up and not to knot up even more. oh joy.

On a positive note, I am managing the hand swelling very well - I have avoided big swellings by anticipating activity and wearing my glove when needed.. which isn't all the time, thank goodness.

I am soooo glad the sicky feelings from the chemo have gone, but I am now properly dreading the next dose -even though I know it's the last one. The effects mess me about for about 9 days and leave me run down and tired and out of control. Ordinarily I would be having my final dose on Friday 6th, but I shall still be on holiday until Sunday - so I have rescheduled it for Monday 9th August. I'll be glad to have this picc line removed then too. It's just one more thing to take care of, be aware of, tuck in, up, or out of the way.
On the 9th I will have a chance to discuss the schedule for radiotherapy treatment following chemotherapy. The associate doctor who saw me at the last chemo session (not my usual oncologist) said that they like to start radiotherapy more than 4 but less than 7 weeks following the last chemotherapy session. Hopefully I can have afternoon appointments which will fit in around working mornings only from September.
I am now quite anxious about starting work again. Will I be able to cope and not get too worn out? How will I keep it simple and not be tempted to do all the extra things that make the job rewarding? Will I get frustrated? Will I be taken seriously or just humoured because I'm not really up to the job? Colleagues fussed over me so much when I came in to move furniture and straighten up my room. Will they get fed up of 'carrying' me in the Autumn term? It's common to be apprehensive about starting back to work after the 6 week summer holiday - that's a long enough break in which to lose some confidence. I shall have been off work for about 30 weeks. So I'll be 5 times more apprehensive in September than I usually am!

9th July - 2 week s after chemo.

I am feeling absolutely fine. I have been busy and happy and enjoying life since last weekend when the toxic feelings lifted, leaving me relieved, though fatigued.
I had some toothache on the weekend of my last chemo, which I panicked about, as it was around my front teeth. My dentist found no problems, which was a relief to me as I was beginning to fear being bald, lop-sided, swollen-armed and toothless!
Then I noticed that any activity at all resulted in my getting swollen hand and fingers - index and middle - on my right hand. Oh - that worried me too. It hurt too - the poor skin was getting rather tight. So far, swelling seems to subside when I rest up.. but it takes a lot of idleness to get it back to normal size. Over time, if I don't manage it, it will swell and not subside and become permanently fat. I made another appointment with the lymphoedema physiotherapist and she prescribed me a compression glove, which I have to wear all the time, for ever. Now that's another thing to get used to - having a chronic condition... can make you feel old, past it, worn out, unattractive. uggh. 'flesh' coloured surgical hosiery! I've been blinging mine up with a huge ring and a jolly bracelet!

Steph's Top Tips No. 34: If camouflage is impossible, if you have an undesirable attribute - bling it up, make a feature of it, go large and bold. I wear big earrings, bright scarves and hats rather than a minimal beige coloured headscarf. People can tell you've got no hair anyway (no 'sideburns' is a give away) ; if you look embarrassed about it, everyone is awkward. Give them an opportunity to say 'I like your headgear', rather than thinking, 'oh, she's bald and trying to hide it'.

Little John was 12 on the 1st July. He had a few friends over for a water fight and a birthday tea. I was really glad of Jennifer's help in getting the food together because I was exhausted and feeling rough. It all went well. Jennifer spied all the cherries on our tree were ripe and collected 2 bags full! The cherries were really tasty and prompted me to get the rest harvested, which I did at the weekend with fab new extending tree pruners, lopping off whole branches. (it needed a trim anyway!). With 25+ lbs of fruit I have bottled cherries, made cherry jam, and frozen cherries. I am really chuffed about my jam. Feel all country ladyish, and 'Good Life'y, I distributed a few jars at school. Pitting all those cherries was just the sort of time-consuming repetitive activity that causes swollen fingers. But then, so does housework, gardening, typing, knitting, hoovering etc etc. During this gorgeous heat wave we have also planted tomatoes and herbs, and made 2 hammocks.

Now I have a picc line for delivering my chemo drugs, I am 'under' the district nurse now, as well as everyone else. Every week she has to visit me, flush the line through with saline, clean the area, change the dressing and plastic attachments. I'm amazed at how much ridiculous pen-pushing/bureaucracy is involved. We spent an hour all told, as I had to answer a whole file of questions about my health, status, emotional state. I feel quite guilty to be such a drain on resources. This picc line is to be used once every 3 weeks for a single blood test and then for chemo delivery. But it needs servicing every week! It takes a shed load of sterile packs and specialist plastic bits n bobs, swabs and gloves and plastic aprons and so forth every time she visits. I couldn't be a nurse; I'm too thrifty! what ever happened to a bit of cotton wool and a good glug of Dettol? Its politico-medical correctness gone mad. No wonder parents these days are cluttering up A&E with trivial cuts and grazes; they've been conditioned to believe they can't cope at home. Stuff and nonsense. I could make the necessary cuts in the NHS - easy. Let me at 'em!

Last Friday, my breast care nurse telephoned, which I thought was nice. I thought she'd phoned to find out how I'm doing, but no. She had another patient who had seen me at Seroma Clinic, and wanted to know how to get hats like mine. Would I mind phoning her up? Of course not!

We met up on Wednesday at the Cancer Centre, borrowed a little meeting room, and played with her head, trying on my hats and scarves and showing her how to tie them and make a feature - see Top Tip No. 34 above!! She was ever so thankful, and went away with about 5 of my hats and scarves and a huge smile! She had been really worried and upset with the hat she had bought online - which was the weird pre-tied bandana thing that only people with cancer wear. She said she felt it screamed 'I've got cancer'. Now she's set to face the world, as her hair is due to fall out this week.

I have done really well not to have caught any colds or infections so far. I recognise I am vulnerable to disease and sometimes I feel a bit run down or tired or breathless owing to low red blood cell count. Most people tell me I look really well. I do. But that's because they only see me when I'm up and about, not when I'm too sick and tired to get dressed!