The end of phase one of my journey….

Standard

I’ve just checked back and can’t believe I haven’t posted since March 17th – serious rap on the knuckles for me!

It’s been a spell punctuated by lots of highs and a few lows – namely three different infections and three lots of antibiotics, the final one of which (where I had a staggeringly high white blood cell count) followed hot on the heels of my fifth round of chemo and first round of Herceptin and resulted in me not bouncing back as normal and being very debilitated for the best part of two weeks – not fun 😦

I was also prescribed codeine for pain at one point but we discovered, within 6 hours, that I can’t take codeine. SERIOUS bout of vomiting ensued, far worse than anything I’ve suffered with the chemo (you get the idea). Am actually glad it happened now as I they would have given me it after my operation so at least I can forewarn them not to – or they (and I!) will suffer the severe consequences!!

BUT (like Tigger!) I have now bounced back, just in time for my sixth and FINAL round of chemo TODAY. I had an echocardiogram yesterday to check if my heart had been damaged at all by the first round of Herceptin I had earlier in the month (it’s a possible side effect of the wonder drug) and it hasn’t so I’ll also be having that today too. It means a long day at the chemo unit (am expecting between 4-5 hours) but it’s very civilised and I’ll be sitting with my feet up being waited on (drinks, lunch etc), and I might squeeze in a little nap too 🙂

The last two rounds, and today, are a different type of chemo drug to the first three rounds and have brought with them different side effects. I didn’t read all the possibles (just in case they became self-fulfilling prophesies) but went with the flow and checked things out as they happened. Most common (which I have had, progressively worse each time) is the aching limbs and back pain, like you’re coming down with the flu where everything aches from your ankles to your eyeballs. Last time round I slept for around 20 hours out of 24 on 3 days the tiredness was so crushing too. Others have been:
· Painfully dry and sore mouth and complete loss of appetite and sense of taste
· Water and gunky eyes which I literally have to peel open in the morning
· Deterioration in eyesight (temporary I am reliably informed) – Ray keeps catching me squinting at the telly and I’ve caught myself moving things close or further away to read them (the old adage: “it’s not new glasses I need but longer/shorter arms!!)
· Weird things happening with my smell. Certain body and foot creams have been ditched as I can’t bear them, poor Ray has been banned from wearing one aftershave and I can’t cook broccoli (for which Ray is NOT disappointed). I love it normally and would happily eat it every day. Ray – not such a fan!
· Toenails going black! Thankfully I have kept them, and my fingernails, painted all the way through treatment so at least they are hidden from view. Some patients’ nails actually come off but it looks like I’ll hang on to mine, even if they are an iffy colour underneath!
· My eyelashes have pretty much gone. Think I now have three left on my right eyelid and about five on my left. Have lost quite a lot of my eyebrows too but they were thick to start off with so don’t look bad. I’ve tried some stick on eyelashes (both individuals ones you insert and complete lashes) but I looked like Daisy the pantomime cow so will probably give them a miss. Hopefully all my hair will start growing back in about a month – am very interested to see what comes first!

In other ‘medical’ news this month my PICC line worked its way out so I no longer have to shower and bath with my arm in a protective bag and I will be able to swim again (and, more importantly, go in spa pools!) after the rest of my treatment (operation and radiotherapy). The plan was to leave the PICC line in for as long as possible as I’ll be having the Herceptin every three weeks for a year, but even having it in for three rounds of chemo has protected my veins and the nurses are able to administer it through the veins in my hands which is great.

The stupidity of what most of us nickname ‘chemo brain’ – basically the capacity to forget even the simplest things – continues. I am never without a notepad or Dictaphone to help remember things – quite simply if it’s not written down then it’s not going to happen! And I’ve gone from someone who could remember names, addresses, phone numbers and all manner of random information to staring blankly at people, scrabbling around for a hint of what they are called and what we were talking about. Things slip from my mind like water through my fingers, catching me completely blank mid-sentence, such a strange sensation for someone who was previously reasonably quick-witted and informed! I also do stupid things – or forget to do things completely. A classic this month was popping into Aylesbury to go to the bank, parked, had appointment and walking back to car I was very proud I had at least 20 minutes left on my ‘ticket’ (normally I’m racing back, thinking up excuse for warden on route in case I’ve gone a minute over and he’s hovering by my car like a vulture) when I realised I hadn’t actually BOUGHT a ticket, even though I’d parked right next to the machine – duhhh! Thankfully I hadn’t been spotted and made my escape, penalty free!

As in previous weeks I’ve made the most of my good spells and have seen lots of friends and done lots of lovely things. The biggest highlight was my amazing friend Becci running the Macmillan St Albans 10k on Mothers’ Day in my name, raising £1,190 which (along with the Gift Aid) pays for a Macmillan nurse for over a week. She was awesome and is pictured with her two little boys after completing the run in 57mins and 54 secs – she was SO determined to do it in under an hour!

image

Ray and I also had a lovely long weekend at the coast (Hayling Island, Bosham, Worthing, Eastbourne etc) and caught up with one of his mates from basketball playing days AND Gary’s gorgeous two dogs Oz and Bailey which cemented my dream of later in the year getting another dog. We so miss Charlie, who we lost four years ago at 12½, so watch this space – after treatment ends this may turn into a doggie blog!!

image

image

Last week was supposed to be my ‘good week’ before today’s treatment and while we did manage lunch with friends on Monday, we had to ditch plans for a concert in London on Tuesday night, I just wasn’t fit enough for that, and I was SO determined to make it up to Manchester on Wednesday I forfeited Kenny G so I could make it ‘oop north’ for a night to see my gorgeous friend Debs for an overnight spa break, my glamorous little sis Caz who joined us for dinner, and the amazing Colette who took a day off work just so we could have lunch. It was the first time I’d been on a train since before Christmas and the furthest I’ve been without Ray since treatment started. Prior to that everywhere I have been and everyone I have seen as been within a 1hr drive of home. My life has become geographically and psychologically reduced on a massive scale as I’ve focussed on chemo treatments and been restricted by risk of infection, but those days are nearly over – woop! Woop!

In terms of what comes next I have a battery of tests and scans over the next few weeks and will then have a radical mastectomy either the last week in May or first week in June. After my wound has healed (around six weeks) I’ll start a month long course of radiotherapy which means driving to Oxford each day, Monday to Friday. Am not worried about any of that as the worst part – the chemo – is almost over 🙂

Ray and I are squeezing a holiday in before my operation. Not quite as glamorous as our 24-night anniversary cruise last year but two nights in Southampton and then four nights on the Isle of Wight. We’ve only ever been there on day trips but absolutely love it and I’m trying to convince Ray that it’s like going abroad as we have to get a boat to get there!!

More soon – I won’t leave it so long I promise! xxx