The last five years of my cancer journey have taken me in directions that I never ever imagined in my wildest dreams, off caravanning around the UK in the Catavan with Poppy my faithful little kitty,
Poppy taking caravan life in her stride
writing and publishing a book, being part of a wonderful eccentric group of friends called “How far across Europe and back can you do in a day and still see the sights and have at least 2 scoops of ice-cream” and rekindling my love for vintage cameras and sewing machines. I’ve met some wonderful supportive people and I cannot thank the MacMillan Nurses and the Medical Staff at the Queen Victoria Hospital, East Grinstead enough. Dedication to the patients in their care is an understatement.
Another five years on cancer drugs but as they cause no side effects and they keep me safe, hey it’s no big deal.
Where to next? Standby for further post-lockdown news.
Breast Cancer sufferers that is. I just found out that a lady who I’m mates with on Twitter has cancer and like me she gave up the chemo treatment, in fact she didn’t have any chemo at all and is now clear. Fabulous news for her and me. She’s also responsible for giving me my fix of cute kitten pictures! Oh and she’s a bloomin’ good writer with a great sense of humour to boot.
A while back I listed diet, de-stressing, exercise and lifestyle changes as the 4 things I would be concentrating on to beat this feckin’ disease, but I’d like to add one more element as well and that is humour. How can you feel or be ill when you are indulging in a huge belly laugh with your mates? For me it’s reading any of Terry Pratchett’s Discworld books. That man’s writing has the capacity to totally soften my stiff upper lip and make me laugh out loud in crowded trains and possibly church, although I haven’t tried that last bit yet.. I’d also list the Monty Python films and TV series, Puckoon by Spike Milligan, Mrs Brown’s Boys, Father Ted, all the Carry On films, The Rocky Horror Show (Tim Curry in drag and the Time Warp!), Billy Connolly, Anne Robinson (yes really – she made me giggle all the way through the Weakest Link when I was a contestant on it a few years back).
Terry Pratchett’s Discworld Novels
Cast of Father Ted
Norman Cousins’ story is often cited as a prime example of the curative property of humour. He was diagnosed with Ankylosing Spondylitis and was given a 1 in 500 chance of survival. He promptly fired his doctor, started taking massive doses of vitamin C and watched every funny film he could find. He managed to add 26 Years to his life since that first diagnosis. Not a bad result at all. I’d be happy with that!
The amazing Norman Cousins
Other things that make me laugh are creating quirky embroideries and what could be more quirky than a Flamingo in a cycle helmet riding a bicycle? I giggled all the way through making this one for my Etsy shop. It’s sort of a tribute to this year’s Tour de France! I hope it makes the eventual buyer laugh as well.
I’ve just finished session 4 of chemo. I’ve had 3 x sessions of FEC 100 and 1 x session of Taxotere and I can’t take anymore. My body is gradually being poisoned to death by these drugs which incidentally do not know the difference between good cells and bad cells. They wade in there and destroy everything leaving your body at severe, and I mean severe risk of infection which you can’t fight because they’ve also destroyed your white blood cells. I was proud of my immune system’s ability to rally and fight and now I find it is drastically compromised by these drugs.
I was given Taxotere last Wednesday and once the steroids I had to take as well had worn off I fell prey to diarrhoea on Sunday which has stayed with me to now. A panicked call to the chemo unit on Sunday night invoked the response “Oh yes, Taxotere is known for that”. On describing the rest of my symptoms I was told to come in to hospital for assessment. When I said that I couldn’t drive myself and my neighbours were out, I was asked “Can’t you take a taxi?” I said I couldn’t afford the fares there and back. They refused to call an ambulance and advised me to call the Out of Hours Doctor on 111. When I went to bed on Sunday night crying my eyes out I was unsure if I was going to wake up the next morning. In desperation this morning I contacted my fellow chemo chums on our Facebook group. Immediate replies from these amazing women told me to take Imodium straight away which I have done. In the 3 calls I have had with my chemo unit since Sunday night I was told to just keep up the fluid intake, not one single mention was made of taking Imodium. This is just one incident of the unsupportive nature of my regime. My oncologist has deigned to see me just once during the entire period of chemo, yet I know from my FB ladies that their Oncologists at the very least telephone them before each chemo session to discuss side effects, reduced doses etc. At my appointment the Oncologist spent more time looking at his computer screen than talking to me the human being. I asked him the question “Will I have another scan when chemo has finished? He said No, we got it all at the op. So really, what was the flipping point of chemo in the first place? And the answer to that is, it is Protocol and a Cash Cow. It doesn’t matter how the patient will cope with these toxins, just blindly follow Protocol laid down, one size fits all and pay the money to the Pharmaceutical Companies. Incidentally each patient on chemotherapy is worth £200,000 to the industry.
Well this patient has had enough, I know instinctively that my body will respond better to a diet wholly containing foods that are known to be anti-carcinogenic, exercise and a de-stressed lifestyle. My Oncologist wants to see me next week to discuss, I will speak to him and I will tell him that in 100 years time this form of cancer treatment will become known as the most ‘Barbaric Treatment of its Age’. It is sheer and utter hell and I for one am not taking it anymore.
Apologies for big gap in posts. My first chemo session knocked me for 6. You know you’re in for a rough ride when you can’t even keep your anti-sickness tablets down! Still I was only (and very violently) sick on the evening of my chemo session and fine the next day. Nausea persisted for about a week and then my wonderful body innards got a grip on everything and started getting me back to what passes for normality. I think I’d like to nominate my innards for some sort of humanitarian aid award.
Obviously the PICC Line has been inserted. Was a bit of a woose and didn’t look at the actual thing going in. I pretended to be very interested in the machine they had me hooked up to. They showed me a sample of the line and it is sooooo tiny in diameter and it’s purple which is nice. Here is a picture of it attached to me – I’m thinking of sending the pic to Steven Moffatt, the head writer at Doctor Who and suggesting that he write about a Worthing Craft Artist who is slowly morphing into a Cyber woman all funded by the NHS. Gruesome isn’t it? They said I would soon get used to it. I doubted that for the first 10 days as it was a bit sore but it doesn’t cause me any problems now and when I’m wearing long sleeves I totally forget about it. This is the cover I made for it.
Now the next hurdle to overcome is the loss of my hair – gulp! It has started to come out. I noticed this yesterday and in a panic called the wig shop to see when my wig will be ready as I was convinced I would be bald by tea time. ‘Hedwig’ should be with me or on me by the end of the week and I still have loads of hair on my head to play with as I write this. One unexpected pleasure is that after years of brushing cat hair off my clothes I am finally getting my own back on them and they are now walking around with Linda hair all over them. Revenge is mine, Kitties!!!
This is a pic of Fluffy one of the full time resident pussycats at PAWS animal sanctuary. My friend Susan and volunteer there brought me a lovely big grey mouse shaped cat bed. She put it down for a second to do something and in a flash young Fluffy had jumped in and claimed squatter’s rights. I didn’t have the heart to turf her out, how could I when she puts on a cute expression like this.
Susan was so sweet and found a replacement bed for me, this lovely wicker bed. As you can see I did get possession of it and now Lily is happily installed in and on it. Sorry about pic quality – taken on my mobile phone.
Nest chemo session is next week on 22nd. So I will apply what I have learned. Take sickness tabs before I need them, have loads of ginger biccies and beer on hand and drinks loads of water – easy peasy!!
So I turned up at the hospital this afternoon expecting to have the PICC line inserted, but it turns out it was just the Meet and Greet session. I chatted to a lovely chemo nurse who even made me a cup of coffee. I’ve decided that free coffee and biccies are very important elements of chemotherapy treatment. She was very impressed to hear about my bc Facebook group and I was very aware of trying not to say “Yes, I know about that. We’ve discussed that in our group” when she was talking about side effects, temperature taking etc. One thing, I will have to do is inject myself with a certain drug. I can scarcely watch a nurse inject me, let alone do it myself. Should make a fun video though! She took me to the actual chemo ward where I’ll get the treatment. Eight bays in all with nice comfy chairs and more monitoring equipment than N.A.S.A. There were about 3 people there undergoing chemo. Nice and bright and airy, no trace of ‘let’s hold hands and contact the living’. I’ve got my wig voucher now, so I’ll be off to have a hairy time of it at the studio. Soooo tempted to become a redhead. I was also given a bottle of Scrub wash to slather all over myself pre PICC insertion and permission to drink red wine during the 18 weeks of chemotherapy. Am happy with that – didn’t want to push my luck with single malt whiskey. I’ve also agreed to take part in a clinical trial run by the University of Dundee. You get a gadget on which you get to press a load of buttons about symptoms etc. One thing it does – if you are not feeling too good you can answer a set of questions and if they are answered in a certain way it will send a red alert to the chemo nurses who will call you straight away. Nifty. No reason for picture below, I just like looking at it
When I joined my FB breast cancer group there were 12 of us and now in a few short weeks we are up to 25. I swear I sometimes think bc is becoming like an epidemic. Echocardiogram last week. Another machine they wouldn’t let me play with. I was given the results in a sealed envelope for the hospital. I promptly opened it when I got home, scanned it and resealed it. I think it was OK, kept seeing loads of “normals” and all my figures seemed to fall within the correct parameters. Something called a PICC line gets inserted in my vein next week, the precursor to the chemo treatment. So I am warning you that there will probably be a lot of in depth posts on the technique of how to throw up and miss your shoes. Also watch out for the Spring Special coming soon – “100 creative things to do with the hairy clumps you find on your pillow every morning”
Now isn’t this a cute little sewing machine?
She’s a Frister+Rossmann Cub 3. Her original guarantee is dated June 1971. My friend has had her in his spare room for yonks and decided to rehome her with me a couple of weeks ago. I got her home, threaded her up and after the second press on the pedal she whirred into life – a quick adjustment on the tension and she is well nigh perfect. I’ve named her Maddy after Maddy Prior from Steeleye Span because she was big in the 70s too! More socks have been knitted! You know that saying “Cancer Sucks”? I think in my case I might have misread it as “Cancer Socks”
My first new friend is named Fezzy and comes round to visit twice a day. Sadly not for my scintillating wit and conversation but rather for the handfuls of wild bird seed I throw out for him. Yes, Fezzy is a boy Pheasant and a very handsome one at that. Even the cats are impressed by his good looks. Here’s a short video of him strutting his stuff outside my back door
Fezzy the Pheasant
Isn’t he adorable? I was watching how the light was bouncing off his feathers which made them go from midnight blue to purple to russet. Nothing to beat Mother Nature’s palette. As with most male pheasants he is particularly vocal especially when he sees that I haven’t put down any seed in a while. I’m half expecting him to come through the cat flap to remind me.
I have decided that if I lose my hair through chemo I will most certainly wear a wig with a little bit of scarf tying on the side. My wig will be named and after a deliberation lasting 2 seconds I settled on the name ‘Hedwig’. I just have one teeny reservation which is that she won’t live up to her onscreen namesake and fly off!
I know the internet comes in for a battering every so often for the violence and taunts and trolls but there is a lot of good going on as well. I’ve joined a Facebook group for ladies who are about to undergo chemo for the first time this month. There are 18 of us so far from all over the UK and it really is one of the most supportive groups ever. We swap info on our ops/medication/effects of chemo/nerves at the first one/cyber hand holding and of course jokes. Every single lady on it is a superstar and I count myself so fortunate to have been invited to join it. I think we are going to be cyber friends for a very long time and there will definitely be a few fact to face meetings in the future.
One of the lovely ladies gave me an idea when she posted a picture of a PICC Line cover that you could buy. It’s basically an armband that covers the bits of line that stand proud of your arm. So I got out my embroidery machine and a piece of fleece and came up with this!
It’s not sewn at the seams yet as I need to fit it once the line is inserted (next week – gulp!), but I’m pretty pleased as to how the design turned out. In fact I might just celebrate with a small Irish whiskey this evening (yes my whiskey taste buds have come back post op!).
I had a letter on Wednesday asking me to call and make an appointment for a Bone Scan (item 3 on The List) at the hospital. I called and was lucky enough to get a cancellation appt for the next day. I got there for 12.45pm when they gave me a mild (I hope!) radioactive injection. Then I was told to go away and drink 2 pints of liquid before coming back in 3 hours for the actual scan. I joked about downing 2 pints of Guinness expecting a tut tut, but apparently they don’t care what the liquid is as long as you don’t turn up again inebriated! I did have a bottle of water in the car and I downed it along with a very healthy lunch. After acquainting myself with all the charity shops in Chichester, visiting all the public loos in the city, indulging in a coffee and a prayer at Chichester Cathedral I ambled back to St Richards. When I saw the notice in reception that one of the cameras had broken down I thought that the session would be cancelled but apparently it meant that the bed they lie you down on was out of action and I would have to be scanned in instalments – 5 to be accurate. I had head, chest, hips, legs and arms and got into some pretty amazing positions which would have put a Yoga instructor to shame. After the head one was taken I happened to glance up and saw a glowing skeleton of my head and shoulders on the monitor! Totally fascinating! The Radiographer was laughing as I pointed at it twittering “That’s me up there, not in the flesh”. I guess it’s not a sight most of us ever see, I found it intriguing especially as she told me I was emitting Gamma rays. Beam me up Scottie! Although it took more time it was in the end more beneficial to me as each section of my body was scanned at a higher resolution than it would have been with one all over image. Actually trying to get out of the car park at rush hour took longer than the appointment. CT scan already arranged for next week – yippee! I couldn’t help it, this lovely Arthur Wood Teapot meowed at me from the top shelf of a charity shop!
I don’t really need another teapot, but it just makes me smile and when the hilarious image of my glowing skeleton has faded from my memory this little chap will keep me laughing.
Dressings have been removed and a bit more fluid released in to the world. My surgeon is very pleased at how the healing has been progressing. She had 2 nurses with her who helped with prising off the dressing (which was painless btw). In my head I kept imagining that it would be like the dentist with his knee in your chest trying to grapple with a feisty tooth.
They seemed to want to make sure I was OK emotionally seeing my scar for the first time which was lovely of them, but I was fine. I initially came to the conclusion that it looked like something from a scene in Silent Witness (BBC producers – if you want to film it please email me, rates negotiable). It is actually a curvy scar almost like a big smile. It might be quite fun to get the marker pen out and draw in 2 eyes and a nose.
Apparently I had a high lymph node involvement, 10 out of 24 nodes removed tested positive so the future treatment will be more aggressive. Ready for the list?
Echocardiogram CT Scan Bone Scan Chemotherapy Radiotherapy Tablets for 5 – 10 years Kitchen Sink
I am exhausted just reading this list. I’ve already checked up on my Oncologist and I’m pleased to see that in addition to his Chemo expertise he has written and published 6 papers on c cells. He’ll do!
Can’t think of any pics to put up but I do have a recent video of my clever Daisy taking her antibiotic tablet without me having to resort to restraining her in the big nasty towel. She is the only cat I’ve ever had that will take her pills willingly. It’s only a few seconds long but enjoy!
I’ve been removed from my dreaded drain and have managed to get my consultant’s OK to go on half medication now. Yippee! Apparently I was supposed to have been given a spare bag for when the first one filled up. I did wonder about that as it was starting to get heavy and I had visions of having to wheel it around to avoid developing a leaning to the left.
As I was making my way to the hospital exit after being given my freedom I bumped into the lady who was in the bed next to me in the ward. So lovely to see her up and about and looking so well. Big hugs were exchanged. We are hoping that we get to be chemo chums as well, you never know.
I’ve been doing some walking and I’ve even been to the hairdresser to get a new hairstyle! I had a nice pic of a Helen Mirren hairstyle on my Kindle, so I plonked it up against the mirror and my wonderful stylist cut it for me.
I’m driving now as well, just short hops to the supermarket and my favourite wool shop and cafe, oh and the library as I had a stack of books I’d reserved awaiting collection. I’ve even managed to knit half of a shocking pink woolly sock over the last few evenings as well. Will post a pic of them when finished. Next appointment is next Friday to have the dressing changed. I’m not looking forward to that as it does appear to be welded on and totally bomb proof! Surgical instruments may be required.
The cats have settled down now, except for Daisy my Tortie who seems to be running around playing tag with an invisible cat friend. At 14 she is the oldest but she is also the slimmest, cleverest and the most energetic of my cats (I’m covering the screen, so the others won’t get jealous at what I’ve written).
Now as I hijacked Lynyrd Skynyrd’s classic for my blog title it’s only right to add a link to the original Free Bird. This is Free Bird being performed on The Old Grey Whistle Test in 1975. https://www.youtube.com/watch?v=XXVa3ibi6i8