HUGE apologies again for the lack of posting – I am still alive and well!!
My life is definitely split into very different phases during the three week treatment regime I’m under – a third of the time I am too exhausted to do very much (including posting blogs and answering emails), part of the time I am having treatment, medical appointments and tests, and the remainder I am enjoying feeling well and busy doing everything that has piled up in the preceding days, seeing friends and family, and spending quality time with my hubby, so I don’t get the chance to update then either!
BUT, here I am on the morning of chemo round 4 (of six) so I am half way through the first phase of treatment and boy, was the tiredness worse again this time. The chemo itself was a breeze, had the 9am slot at the chemo unit and was done and dusted in 1hr 45 mins – on the two previous occasions we’d been there between 4.5-5 hours! The remainder of that day I was fine and the Tuesday I was on my post-chemo high with so much anti-sickness meds in my system I felt I could take on the world. I knew this would not last and sure enough, by the Wednesday lunchtime, I could feel myself tumbling into the pit of chemo exhaustion in which I languish for around a week. Poor Ray got to see what I am like when he is at work on days 3-10 after treatment that first weekend (some days I make it out of bed to get dressed 10 minutes before he arrives home!). On the Saturday we went out for lunch with plans for a wander round a garden centre. I made it through lunch – just, without landing face first on my plate, but we then headed home where Ray packed me off to bed at 2pm, waking me at 6pm. I had not stirred and was totally unaware how much time had passed – exactly what I am like when he is at work. On the weekends of rounds 1 and 2 I had been tired but nothing like this time – it’s just the cumulative effects of the chemo in my system – so goodness knows what I will be like this time!
The other side effects have not been too bad. My mouth gets sore and dry and I can’t face hot drinks so drink squash for about 10 days, my eyebrows have thinned out a bit but it’s not noticeable as they were fairly bushy to start with (no threading or waxing of those needed in the near future!) but I have lost a lot of my eyelashes. If only every other one or two had come out it would be easier to mask but no, I have gaps then lashes, gaps then lashes! With careful application of mascara, plus amazing stuff like mascara that adds extra fibres, I can get away with it – not sure how much longer for though. I’ll then be resorted to the stick on variety!!
For the next three treatments I may have to cope with other, new side effects as well as the tiredness as I now swap to a different chemo drug – Docetaxel. I won’t go into details about the possible side effects as I am convincing myself I will not get them (fingers and everything else crossed!) but to be on the safe side have made sure we have plenty of Immodium and painkillers on standby!!
I learned at my follow-up appointment after round 2 that my cancer is HER2 positive which means my cancer cells have too much of a protein called human epidermal growth factor receptor 2 (HER2) on the surface, which stimulates the cancer cells so they divide and grow.
The ‘wonder drug’ Herceptin is a targeted treatment which locks on to the HER2 protein, blocks the receptor and stops the cells from dividing and growing so, from next month, I’ll be having that by drip every three weeks for a year. Because my veins are so poor they will be leaving my PICC line in to administer the Herceptin so Penny (nickname for my line) and I are destined to be inseparable for months to come!
The key side effect of Herceptin is possible heart damage so I’ll also be having regular echocardiograph tests to check its function. Have had the first, a pre-treatment, base-line check and my heart is great (always good and reassuring to know!), I have another booked for April 27th, three weeks after the first treatment, and will then have one every three months. Good news is if it does cause a problem, research shows the heart recovers and you can continue with the Herceptin after a short break. At £22,000 per year for the drug I am certainly getting my money’s worth out of the NHS!!
I also learned at my check up on Wednesday I have lost 8kg in weight (1st 3lbs!!). I am ‘eating clean’ pretty much and following regimes developed by two women (Professor Jane Plant and Bernadette Bohan) who have both had breast cancer and developed diets they believe helped them combat the disease. One in particular is based on research into why there is such a low incidence of both breast and prostate cancer in Asian countries and one of the key determinates seems to be diet. Lots of fresh fruit and vegetables and very little dairy so that’s what I am doing. Eating well to help my body fight the disease which is also helping me lose weight (despite all the lunches I’m having on my good week!)
It’s amazing how quickly your tastes change. When my mum’s hospital appointment last week was delayed by almost two hours I was ravenous so went to the Costa Coffee in Stoke Mandeville Hospital. Had absolutely no desire for the cakes, pastries or sandwiches I would normally have plumped for and instead picked the carrot and cucumber batons and humous!
I knew I had lost weight (can feel it) and thought it was around 12lbs, which is what my scales were showing – and had been for several days – so when I stepped on them again on Thursday and they still showed 12 I moved them down the hall slightly – down by 14lbs – another few feet and it was 15lbs. Any further and I would have had to open the back door and head out into the garden so have decided they are not a reliable indicator and I’ll stick to the super-duper, highly calibrated hospital scales!
Over the last three weeks I’ve also joined a support group in Aylesbury for women with breast cancer, and survivors. WOW – what an amazing group of women the Breast Friends ladies are. Everyone has a very different story of symptoms, diagnosis, treatment regime and recovery and the openness and positivity with which everyone is or has faced their battle is awe-inspiring. Will be getting involved with the group using my professional skills, raising funds – and taking part in – the Aylesbury Relay for Life in aid of Cancer Research UK in July (see http://www.relayforlifeaylesbury.org/) and also drawing on them for support over the next few months.
Never one to rest on my laurels (apart from days 3-10 when I am asleep!) I am also joining the Bucks Cancer Patient Partnership Group which works with the PCT to improve cancer services across the county.
As I was clambering out of my pit of exhaustion my lovely fiend Vicky (personal chef who also provides amazing soups and foods for my rough spells) took me to a cup-caking decorating class which was great fun and meant 2 hours absorbed in something completely new. I was pretty impressed with my creations (see pic below) and they went down well with Ray’s colleagues when he took them into work the following day. I have now become obsessed with cake decorating, have bought lots of piping bags, nozzles and decorations and am going to thoroughly enjoy practicing more elaborate creations (one I get a food mixer so I can make proper butter icing!)
During my good week I am also overcome with a need to tidy things – cupboards, drawers, wardrobes etc. It’s like the nesting pregnant women go through before giving birth but I get a short hit every three weeks – almost like I need to make sure the house is tidy before my tired spell. Quite why it meant I tidied the kitchen cupboards at 7am one morning last week I don’t know, and last night at 11pm when I was checking we had enough over the counter meds to combat the possible different round of side effects I ended up emptying the contents of our medicine drawer onto the bed and clearing that out too. Just as well as I don’t think a throat spray which expired on 2010 would be any use to anyone!
During my good spell Ray and I have had two lovely weekend day trips out – to Southend (we so love the sea) and Bourton-on- the Water on Saturday. So good to just get away and be ‘normal’ for a few hours (well, as normal as we’re ever going to be anyway!). Those of you who know us well know how important holidays are to us and as we can’t book anything at the moment (have had to cancel the two things we did have scheduled for this year) just getting away for a day is wonderful. I do wish there weren’t so many blooming holiday adverts on the telly at the moment though – I have serious holiday envy!!
Last Monday I spent the day with a friend who owns her own company helping her with some PR. How strange it felt to be in an office, chatting about issues, ideas, and giving my view on things – got the brain cells working and reassured me I can still cut it in the work environment! It’s only been nine weeks since I went on sick leave and some time (usually when I’m at the bottom of the pit of exhaustion) I do wonder how/if I’ll ever get back to work. But once the tiredness lifts I’m fine and helping Karen out last week made me realise this is all a temporary blip and by the Autumn I’ll be fit and rearing to go again.
Over the last week have also caught up with lots of friends – from my days on the Bucks Herald 25 years ago (eek!), to my days in radio with both FOX FM and MIX 96, and my current role. I am blessed with wonderful friends and family who are keeping me going through this journey – and I’m also grateful to the new friends I am making on the way.
If you haven’t already had a look then do please check out my amazing friend Becci’s fundraising page. She is running the St Albans 10K in my name for Macmillan Cancer Support and it would be fantastic to give HER as much support as possible too: https://www.justgiving.com/Becci-Cussens1
I’m all set for today. I had my pre-chemo glass of champagne last night – one of a few rituals I have adopted for this part of my treatment. The others are very simple:
- I wear a beautiful necklace given to me on my birthday by my friend Mags the day I went on sick leave last month
- I wear a specific pair of earrings
- I carry my Guardian Angel from Vicky (chef and cake decorator partner in crime!)
- And take a fleecy pink blanket for the hours in the unit when I’m sitting with my feet up being waited on by the lovely volunteers who bring us drinks, lunch (and in my case mop up after I spill my tea!)
No, I do not wear a pair of lucky knickers – that really would be far too organized! My plain, black, Bridget Jones style passion killers have served me well so far J
Thanks to all of you who read this and the lovely comments you leave. Apologies if I have not been in touch by email, text or phone to reply personally but this cancer treatment business is soooo time consuming!! I get such a buzz when I see someone has taken the time to comment so please realise how grateful I am – you are all lovely people and I am blessed to have you in my life.
Will sign off now and update later in the month. If you have made it to the end of this massive missive you deserve a medal! When advising clients on blogging I have always said ‘little and often’ is best – think I need to take some of my own advice on this occasion 🙂
I feel I should have a sign to hang out now for the coming 10 days – “Fiona is hibernating but will resurface around March 27th!”
Will leave you with this great article from the LA Times (published in January) which is so good and applicable in so many situations – not just a medical diagnosis – but relationship break up, redundancy, basically any life crisis that befalls anyone: http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407. Let’s all learn to ‘dump out’!