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Mon 27th November 2023.
Its Treatment Eve. Tomorrow is Day One of my therapies to make me better. I’ve been meaning to start this record ever since I had the lump in my breast confirmed as an actual lump by the district nurse (up until then I had sort of hoped it was just a figment of my imagination, although my imagination is not usually quite so creative…)
Every day that goes by I think I should start at the beginning and record my journey. Every day I don’t do that, and another day’s worth of diary gets added to the undone list and so becomes more undoable. This, I know, is silly. I should just start with today. After all, I can just go back and fill in the past 3 months at any time. Its important that I start. So, I chose to start NOW.
Its Treatment Eve. I decided pretty early on that I’m not over keen on the shortened word “chemo”. Chemo to me means sick looking people with bald heads sitting in a hospital bed wired up to goodness knows what for hours on end. That’s what the word Chemo says to me, that, and death.
Chemotherapy is the full word. Chemotherapy means “the treatment of a disease by the use of chemical substances”. The treatment is chemotherapy. So why oh why do we shorten it to chemo? Just look at the bit we miss off when we do that. We miss the therapy, and THAT’S the most important bit. To me “therapy” means help, support, guidance. Therapy is something positive you engage in that makes you better. So, I’ll be having either chemotherapy (it is what it is) or just plain old therapy, thank you very much. I’ll take a bit of that. I’m also having Immunotherapy, this is defined as “the treatment of disease with substances that stimulate the immune response”, and guess what, THAT’S a therapy too and therapy makes you better, helps you to work things through.
Just had my first bubble bath wearing my “sexy” reinforced plastic Limbo sleeve to protect the PICC line that will remain in my arm for at least the next 3-6 months- Maybe a case of practicality over high fashion in this instance! I sent a photo of the sleeve to my friend who is just one of life’s Best Humans, she is loving, caring, funny, and a little bit bonkers with the biggest heart of gold ever. I titled the image “From Ann Summers Chemotherapy Collection” and she gave the correct response. As I knew she would. I love that girl!
“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what the storm is all about” Haruki Murakami
Tuesday 28th November
Day One of Therapy.
An early start, leaving the house at 8am to get to Velindre, The Cancer Hospital known in Welsh as Ysbyty Gobaith, The Hospital of Hope. My appointment was at 9:15 and I walked onto the Chemotherapy Day Unit at 9:05 am. I left it at around 2:30pm. The staff were all amazing. They explained everything, although I instantly forgot most of it! I knew what was happening and when. They told me what was happening now and next. It really was ok. I understand that its Day One, that it will most likely get progressively harder as the weeks go by, but today, I entered the ward with my full complement of red and white blood cells feeling mainly fit. A little overweight, yes, but I am a 50 something menopausal white western female who has always loved her food, so…... Let’s say that mentally I was feeling fit and ready. I felt calm. I felt a quiet focus and determination.
I had decided to try the relatively new treatment of cold-capping where they place a gel-filled cap onto your damped down hair which is then connected to some sort of refrigeration device. I looked like a strange cross between a jockey and the Dr Who monster, The Ood, only with the tentacle at the back, or maybe an unsuccessful entry for the cast of Alien V Predator? Anyway, I had heard so many horror stories that the cold cap pain is too much to bear, and many people don’t try or stop it quickly due to the discomfort. Cold capping can, in some instances, reduce or prevent, hair loss. My Oncologist explained that, if I wanted to try it, it must be from Day One, you can’t start it part way through treatment, there would be no point. In the days before I thought a lot about the cold cap. I’ve never actually felt I could celebrate my hair, not one for spending a long time, well any time at all really, on drying, styling, curling or straightening.
Conversely, I do LOVE a trip to the hairdresser, when someone else does all that though, and the 6 year old me enjoyed nothing more than sitting on the wooden school hall floor for Assembly in class rows with my long twin ponytails being tugged at and played with by those sat behind me. I had decided to give cold capping a go, nothing to lose, although I fully expect to quickly give it up. I have enough head carves and hats, almost to obsession, and I like to think of my self as a bit of a hippy chick, a closet Bohemian. I can wear a hat, I can rock a headscarf (if I practice tying it enough). I will try the cold cap but I have my Plan B firmly in place and I think it will look ok. I will take control over my head, not the cancer. It will be me that decides: “I decide, I say who, I say when” Julia Roberts in Pretty Woman.
I’m not sure exactly how long I had the cap on today, a couple of hours maybe, including being briefly unplugged for a comfort break, but it was absolutely fine. I had already thought that, after experiencing severe migraines for most of my adult life, I probably have a pretty high pain threshold, at least in my head. The nurse laughed when she removed my cap as I had icicles in my hair which she flicked off. It was a light-hearted and genuinely funny moment. The upshot being that I will certainly keep on giving it a try and just stop if and when I need to.
Another thing I found out was that they offer complimentary therapies such as reflexology, aromatherapy, and massage. When asked if I would like a referral I said yes without a nanosecond’s hesitation!
Wednesday 29th November
A couple of friends have noted that I’m one down, I’m now on the road to recovery, onwards and upwards. This particular episode in my life journey began that evening in September, when the road ahead was dark and strewn with uncertainty. I had recently learnt that, as humans, if we start with a blank sheet of A4 paper, and we write down a thought, just one thing, a fact we know to be true maybe. We write down that one thought in black ink. Then, its hard-wired into our nature (well, definitely into MY nature) to think (or overthink?) about the myriad of what ifs and maybes, these thoughts are written in red. Very quickly the page is filled with a couple of black sentences, facts that are true. Then many, many, many more red sentences that are pure conjecture and meanderings. You will think, of course, that’s what our minds are for, but the skill here is to carefully place a VERY LARGE FULL STOP at the end of the sentences in black. Like this ●
Now I’m an ex-grammar school girl and I put myself through an Open University course whilst working full-time and being a single Mum. Correct use of grammar, and the joy that is our English Language, is so important to me. I love Scrabble and other word games; I much prefer words to numbers! That huge full stop freaks me out I must admit, it grates on my inner logophile (and yes, I did just check “what do you call a person who loves words?”) but that huge full stop is where I need to pull myself back to sometimes. Erase the red ink. Concentrate on only the black. When you get more fact, another certain thing, then you can write another sentence, in black, and follow it with another ●
I have breast cancer ●
I am a Legend ● FULL STOP (I embraced the huge punctuation mark and put even more emphasis on this one!)
Thursday 30th November
“I’m wide awake at 4am, without a friend in sight, hanging on a hope, but I’m alright” – The Carpenters.
Strictly speaking, not totally true, I have so many friends in sight. So many that it’s taking the whole day sometimes to update everyone or speak to them- and that can’t ever be a bad thing. I recently told someone that I was lucky and blessed to have realised exactly how many wonderful friends I have in my life. I had written their names on post its, mainly so I didn’t forget to tell anyone of my diagnosis in the initial maelstrom of those first few weeks in September. I was coming out of a period of deep depression, starting a new job, lots of other things too. Then “the lump”, or maybe that should be The Lump? Anyway, the person reflected that, the reason I have so many wonderful friends, the reason I can consider myself so seriously blessed, it’s because of who I am. They chose to be my friends because of me. That was a lovely thing to hear, and I embrace that feeling with open arms. I deserve these people in my life.
Friday 1st December
My lovely daughter arrived yesterday as we are having an early Christmas in Wales this year. Nothing to do with my health condition really, just that she will spending Christmas in Yorkshire with her dad. My son and his partner arrive later today as they are having their first Christmas in their brand-new home in The Lakes. I can’t describe how happy I feel knowing I get to be with all three of them this weekend.
Last night was the infamous Pub Quiz, which was one of the reasons that she came down earlier than her brother! We had a full complement of a team of 6. Had food, a good laugh, stretched the grey matter and came a very respectable joint second, out of 9 teams. Just 1 point off the winners.
Once again, I woke around 4 am, having not gone to bed until just before midnight- I nearly did a full 24 hrs!! I did feel queasy in the night, and a dry mouth- thinking it is the treatment although possibly the food last night…
I am not usually over-faced by a burger and chips; I don’t like parting with my food once I’ve eaten it either! Maybe I might have to scale down on my plan to enjoy a full 3 course Christmas lunch on Saturday now.
We took the car shopping; I was itching to drive myself rather than being driven. A couple of hours out altogether, minimum shop, and managed ok with gift choices. But I feel so ill, already. A touch of nausea, but for most of the time. And now I absolutely ache in my joints, my neck muscles, my shoulders, my breastbone, my bum cheeks! Everything hurts. Already. Hopefully this is my dip time when everything immune is low, hopefully tomorrow will be a better day now. At least my Advent Calendar this year is truly magnificent- a Soap & Glory classic.
Sat 2nd December
Woken still feeling crap and achy. Knowing that my babies sleep in the rooms next to me really warmed my heart.
It’s Christmas Card Picture perfect outside today. I didn’t take any pictures, which is really not like me, my phone has literally hundreds of unsaved pictures that its always telling me to save somewhere or delete. I guess it took most of my strength to walk, although it did make me feel much much better. We all walked the dog, the scenery and weather were, indeed, stunning, and it was a beautiful walk. Back home for a board game invoking nostalgia of past family holidays, always great fun. Then out to the local restaurant for a Christmas Dinner and all the trimmings. When we thought of going out, rather than staying in, I had worried that so early in December wouldn’t be like actual Christmas but, I needn’t have worried. Christmas and new jumpers adorned we pulled our crackers, told the obligatory jokes, donned our hats, and enjoyed turkey and all the trimmings. Merry Christmas!
As the neighbours were keen to meet my family, a few drinks in the local had been suggested. Personally a few hours in any pub, unless doing something “worthwhile” like a quiz, is something I would generally choose to avoid. We popped down, with the caveat that I would see how I felt. Everyone else seemed to be having a good time playing “Killer pool” and similar. I was in some discomfort physically but it was so nice to be with everyone and just take it all in – I felt I shouldn’t join in due to my picc line, just in case, I’m still getting used to it. The dog came too and charmed everyone as per usual. He is so scrumptious but did show off his unique skill of placing himself completely in the way a lot of the time (added obstacle added to the challenge already faced). Thankfully the neighbours decided to head back, so we did too, home to watch the next instalment of the Christmas Dr Who together. It really did end up feeling like a Christmassy kind of day.
Sun 3rd December
I’m loving my Advent Calendar this year! I usually have a little Cadbury chocolate advent, which suffices. This year, as another way to be “kind to myself” I indulged in a huge Soap & Glory one in the Boots half price sale. What a great idea! It feels like such a treat every morning, I love it! I already have a face mask, body butter and foot cream- result!
Had a lovely family breakfast which I took great delight in preparing for them all. Then my son and his partner left on their long drive back to the Lakes, followed not long after by my daughter returning to the Midlands. I wanted to hold them forever, and then hold them some more. I never wanted to let them go. That did hurt. That always hurts my heart.
I’m feeling that the nausea has passed, for now, the aching has more or less ceased. Hopefully that means my bloods will show I’m ready for the next round on Tuesday. Ding! Ding! Round 2.
I spent the evening crocheting a little blue heart inside a bigger pink heart. This is for my Stepdaughter who says her goodbye to her son, born sleeping, tomorrow. I can’t attend, because I have 2 hospital visits, so my hubby will go alone, and give her my gift, to remind her he will always be there with her, in her heart. I will light a blue candle for him at the time of his small service, and thought of the cuddles we will never get to have, the memories we will never get to make.
Tomorrow….
Monday 4th December
Okay, so this is definitely writing in red, this is all after the FULL STOP, yet, try as I might, it keeps creeping back into my thoughts. The last thing my surgeon said was that she wouldn’t see me until after the therapies now. Yet I have a face-to-face appointment today. I know it’s the result of the rebiopsy, the reason my breast is still a multi shaded black, blue, green, purple, and yellow mass. I just think, if it still showed as not cancerous, then wouldn’t that be done in a phone call? So, I do feel that it has showed cancer, so that would mean mastectomy rather than lumpectomy. Not sure if 6 months of therapies would still precede it? Who knows? This is ALL after the full stop, so I try not to go there. I will know more at 3:15 today.
9am and my first hospital visit of the day. Just the nearest, NH, for bloods to be taken pre tomorrow, pre my second therapy. My bloods will show if I am well enough to proceed with the next dose each time. There is no one in NH qualified to take bloods via a picc, so into my left arm goes yet another needle.
3:15 and I’m back again, this time in a seat just around the corner. After a 40-minute wait VL confirmed what I’d imagined in the red writing. The 4th area shows some cancers and there is a mysterious, as yet uncharted and unscanned area between the cancers, which could also contain yet more of the disease. There will be a revised plan post therapy. As I am so young (thanks Doc) and its possibly erring on the side of caution, but she recommends mastectomy after the 6 months of therapies now. I took it calmly, we both did. I guess I’d already had it figured out for the past week. My mind believed it knew because it had reasoned the two probable outcomes of the rebiopsy and coupled them with a face-to-face. I had tried to stop at the full stop, but I think I stayed steadfast because I already knew what she was going to say. She has a beautiful Italian name, a beautiful name for a beautiful lady. I am glad she will be my surgeon as I feel a positive connection with her. Her accent is a thick Italian and on the phone, she has called me darling. Having just used “Dr Google” I can now confirm that her title is Consultant Oncoplastic Breast Surgeon, MD (Hons), FRCS (Gold Medal). The later being awarded by the Association of Surgeons Great Britain an Ireland for best performance in the Fellowship of the Royal College of Surgeons exam. After undertaking a fellowship in Australia ,she returned to the UK to undertake another fellowship in Sheffield (like Brisbane but with less Barbecues and more Stainless Steel!). Here she gained 1 of just 9 national places awarded each year. She also teaches at Cardiff University.
The medals, awards and accolades make me very happy to hear, of course, but the main thing is that she feels like a lovely, caring person who knows what she’s doing and will do it to the best of her abilities. That’s enough for me.
Tuesday 5th December
Still loving the advent calendar- todays offering was Speed Plump Hydrating Day Lotion- not sure about the “plump” part as I know the steroids may do that anyway (sorry, that should be in red), but the Hydrating part is good!
A day spent trying to relax before my afternoon therapies. Eating plenty in case I get the nausea again afterwards, ahh so THAT’S my reason to eat today ha-ha, not even kidding myself! I rarely need a reason to enjoy food. A nice long walk with the dog, enjoying the solitude and quietness of the early morning. I always make a point of appreciating this Me Time, before we set off at noon for my 1pm appointment on the Macmillan Ward of Prince Charles Hospital, Merthyr. Half the distance and half the travel time almost compared to Velindre in Cardiff. On arrival we saw a familiar face of a lovely nurse from last week. This ward was smaller, space felt more cramped, but it also felt less exposed, more cosy, in a way. Plus, I am already learning the ropes, so was more than happy to dismiss my Hubby’s offer to stay and just get on with it. All went well, on weeks 2 & 3 of the cycle I have less drugs in my cancer cocktail, so it takes a little less time. Not much less as I still get my picc line flushed, then take antihistamine tablet and anti-sickness intravenously via the picc. The cold cap needs 20 mins cool down on my head before the actual therapy is administered again via the picc which is then flushed again, and the cold cap remains atop my chilled head for another 45 mins before it is removed to reveal what icicle formations I have grown today! Then Hubby and my lift home arrives, all in all I was out of the house for about 5 hours.
I have already discussed the possibility of sleeping in separate beds on those nights if I’m feeling fragile, he understands- I hope. Tonight, I feel ok. I’ll possibly be up early because of the steroids again but, apart from a catnap in the hospital and another watching tv tonight I don’t feel tired, or unwell, or achy- make the most of it girl and stay up until 11 crocheting you crazy, wild thing you!
Just because someone carries it well doesn’t mean its not heavy – Poetry of Monsters
Wed 6th December
Woken at 1:30am (but that’s a whole other story) although I did stay in bed until 3:30 am but could do no more.
8 days in, just another 159 to go before the next stage.
In better news, today’s Advent offering is coconut body butter, mmmmm, yes please! And getting up early means more crochet time- win win!
I felt full of energy today. Drove myself to the local town for some Christmas bits and bobs- epic fail so just had to come home an order them all online. I later went to the neighbours Afternoon Tea where I was out of my comfort zone, fighting my self esteem demons, yet I did ok and managed almost 3 hours there.
Thu 7th December
Absolutely exhausted, all day. I slept a lot, all day. It hurt to lift a cup or fork or to sit upright, my head hurt just being on my shoulders.
Fri 8th December
I really must do the online work today that I was going to do last Thu/Fri and then yesterday. I really have to get this wrapped up and all up to date.
The downside of trying to drink the recommended 2 litres of fluid a day- a gargantuan task for me, but I did manage 1.5 litres yesterday. The downside being I was up not one, not two, but three times in the night to visit the loo. I continue to be totally exhausted. The online work remains to be done. It looks like I need to write off Thu/Fri as my tired days….its been relentless.
Sat 9th December
And just like that, she feels ok again. Normal as you can with cancer and a picc line in.
Today I am so, so, SO happy. Just been to order our new bed for the new house, and finally, after 8 years in the wilderness, 8 years in a double, 8 years in THAT double. We have decided on a gorgeous king size, KING! Hurrah, and about time too. I need a countdown calendar but basically its 3 weeks into new year. Happy Happy Happy Days
Sun 10th December
Felt well. Packed some more boxes. Cooked a Sunday roast with enough for 4 so we can enjoy a roast on Tuesday Therapy Day. Ever conscious that the days are coming, each week in more in general, where I might feel less and less well. I can feel the Sword of Damocles loitering with intent but hopefully it will just swing the other way.
Mon 11th December
Got a lip mask in my advent today, up until then I remained blissfully unaware of their existence. Hope it doesn’t give me a temporary trout pout! Had my bloods done again today, my friend asked when I get the results. I told her they just take my blood every week to make sure I’m well enough for them to beat me up again tomorrow. I did drink at least 1 litre of squash yesterday yet I still awoke with a migraine.
Tue 12th December
An early walk with the dog as a morning therapy session today over in Merthyr. It was still a little dark, the hi vis twins strode out once more! It was a little rainy. Yet it was a lot quiet. A lot peaceful. A lot brilliant when I didn’t expect it. The best start to my day, made even better because I recognised and appreciated it as such.
I arrived in the hospital waiting room before they even opened the doors today, talk about eager! You can never tell with rush hour and roadworks, but hubby really does take being there on time to the extreme! Bless him. I am not supposed to drive after therapy due to there being some alcohol in the meds and, seeing as I wouldn’t even have half a cider if I was to drive, I always totally abstain in those instances I wouldn’t ever risk it. I’ve had just as much, if not more fun, drinking Coca Cola or J2O. I believe that it’s not what you drink but who you drink it with and why. Hence no driving after therapies, even though I feel absolutely fine and capable.
Today’s therapy went well. I’m already feeling like I’m finding my way around this whole New World I’ve been thrust into with no prior warning. I’ve reduced my Therapy Bag to a nearly manageable size now too. Initially it felt like I’d packed for a full activity week away but, now I know the score I just pack 2 or 3 options each time. Today was a puzzle compendium and my crochet. My crochet project is my “Chemo Cardi”, it’s coming on and its looking good. One a side note, my packing here reminds me of the family picnics we used to enjoy. They developed legendary status. There were just the 3 of us, me, my son and daughter, and the money we saved taking our own pre-prepared food meant that we could spend more on travel and entry, and we always have the best time, making life long happy memories. I couldn’t help preparing a bag of tasty treats that would easily feed the 5000, no loaves or fishes required. My Therapy bag, of course, contains the obligatory snacks alongside the activities.
I saw another patient today with a book, an older guy. He is the first person I’ve seen that brought anything else to do beside their mobile phone. Plenty comment on how prepared I am (politely not saying “what on Earth do you need all that stuff for?”), yet they seem to have nothing to occupy themselves. Maybe they have no need. I find that strange. A bit like the parents that had to take their children to Parents Evenings at Primary School and expected them to sit, sensibly and still, unsupervised whilst they went in to see the teacher. Unsurprisingly, I suppose, on the odd occasion I had no choice but to take my children with me, they were of course they were provided with something to do. I am proud to say that they always sat, sensibly, still, unsupervised and occupied, leaving me to bask in the reflected glory of their always excellent report and teacher feedback.
Hubby calls it the 7 P’s, that’s the military’s version: Prior Planning & Preparation Prevents Piss Poor Performance. Similar concepts, just a different angle.
Wed 12th December
I didn’t go to bed until 1am last night, very late for me nowadays, I was wide awake, and I also got hooked into binge-watching drama about Cary Grant that my friend had recommended. Then this morning I awoke, and I mean really wide awake at 5am. Pretty sure these late night/early mornings are down to the steroids. Herbal teabags have made a big appearance in the Gift Bags I have received recently so this morning I felt it my duty to try one. Anybody that knows me even a tiny bit will know the important role tea plays in my life, but I love a proper “builder’s brew”, it must be Yorkshire Tea, and strong enough to lift its own mug! I actively steer clear of any other tea although I did go through a phase of a homemade turmeric tea every morning for a short while I had to quickly follow it up with a “real” cuppa. To break myself in I chose to go for what I imagine is the plainest of all those fruity or herby flavours- The Green Tea. Well, it tasted much like it sounds. It felt a bit like medicine which I drank with a funny look on my face whilst keeping telling myself that it must be doing me some good. It was quite boring flavour-wise, tasted a bit like warm water or very weak mud…I drank it but I’m so glad my mug is now empty. Even if it doesn’t do me any good, it won’t do me any harm and “what doesn’t kill you, makes you stronger” as both my grandmothers used to say.
I do, conversely, have a recipe written down to make my own rosemary tea which I have yet to try out. I absolutely love the scent of rosemary and find it hard to walk past this particular shrub, whether that be in my own garden, in someone else’s (no trespassing obviously, only on the kerbside) or a garden centre without giving the leaves a quick rub and inhaling the scent. Rosemary and lavender, I find them both irresistible. Like most of our old English herbs they both have known medicinal properties, apparently rosemary is anti-everything: anti-microbial, anti-inflammatory, antioxidant, anti-apoptotic, anti-tumorigenic, antinociceptive and finally it’s neuroprotective. Basically, this list makes it sound like a very angry little shrub! It is said to positively affect mood, learning, memory, pain, anxiety and sleep and some studies show it might prevent tumour growth in breast and colon cancer. It appears that lavender is also quite an activist of the herbal world, lavender is anxiolytic, anti-inflammatory, antinociceptive, antioxidant and antimicrobial! Who knew? Not me, I just love the smell of them both.
Now seems like a good time to introduce witchcraft. My first husband accused me of being a witch, a bad witch, to the point of seriously discouraging the use of candles in the house- goodness only knows what he thought I was going to do! Believe me, if I knew how to cast a bad witch spell I probably would’ve done in the end. Once free of this relationship I embraced candles and weirdly one of the things he tried to win me back with was, you’ve guessed it, a scented candle….
As I grow older, I am becoming much more aware of my personal connections to our planet earth. I have always loved walking barefoot on the grass or the beach or crunching through autumn leaves. I will stop to smell a flower (or grope a lavender bush!) on my walks. I love looking at and photographing trees, clouds, the colours of nature, falling leaves and hearing sounds of the natural world, the birds, the wind in the trees. The sense I use least when I’m out is taste- I really do need to go on a proper foraging course! I do love a scrumped blackberry or apple though.
I digressed. Back to witchcraft. My hubby now also calls me a witch, a white witch, one of the good ones. When he says it, it’s a genuine compliment. Now, when I meet another woman and I just know we connect on another level, for any reason, he can often see that too, he sees it happening and says, “there goes another member of the coven”. I have many dear friends that I don’t feel that ethereal connection too and they are still amazing friends. But, and I can’t describe it other than a strong connection that you can almost touch, I can count at least 10 wonderfully witchy women I have in my life already, in varying degrees. Must be another 2 out there somewhere if we have a coven of 13, maybe they are yet to break cover, although I usually feel it as soon as I meet someone. They must be yet to meet, which is quite an exciting thought.
Rosemary Tea recipe
Rosemary Roast Potatoes
(my secret recipe, passed down from my Nanny, given a slight tweak, and much requested by my step-daughter)
I’ve just found this interesting quote that I have never heard before, but I like. Well, maybe the quote found me?
Always throw spilt salt over your left shoulder, keep rosemary by your garden gate, plant lavender for luck, and fall in love whenever you can - Practical Magic
Although I do have both herbs growing in my garden now, they are definitely on the list for the new garden too when we move next month. Is it really only a month? Well, actually its less than that now. My mind is full of themes for the rooms. This place will have my stamp firmly on it right from the outset. And did I mention the King-size bed………
Thu 14th December
My advent treat today was a little silk hair bobble: won’t be using that for a while. My hair still seems in remarkably good condition mind you. It still feels thick and soft. I started using a wide toothed comb and a zero-ph. shampoo (smelling of rosemary no less!) Its back to the daily injection for the next 3 days. I have discovered the best way for me is to start singing as I insert the needle and don’t stop until I pull it out. Today’s song was Rock Around The Clock- don’t ask me why as it just popped into my head. Interesting fact, it was originally recorded by Bill Haley & His Comets 13 years before I was even born, although it was also a hit in the 60’s and 70s. Like many others I always thought they were The Comets, strange. The B side was catchily entitled “Thirteen Women (And Only One Man In Town)”…..only in the 50s.
Fri 15th December
So tired. Just so very tired all day. Walking the dog made me sleep for 2 hours, then I still kept nodding off throughout the rest of the day. Shattered.
Sat 16th December
Tried another flavoured tea. This time it was Organic lemon & ginger infusion, with added sweetener. Tasted much like a Lem-Sip….can’t say I’ve been converted yet, happy to give them all a try. Still tired.
Managed the Veterans Breakfast Club Christmas Lunch. Won a cuddly toy in the raffle so one very happy dog!
Sun 17th December
Not so exhausted today, even managed to do some work. Working on a Sunday?..... trying to make amends for not doing in the week! Made Sunday dinner for 4, so that there’s a cooked meal for me to come home to after the hospital tomorrow.
Mon 18th December
How did it get to be a week to go until Christmas Day?
I have an appointment at the Royal Gwent Hospital today. I think it’s for the results of my genetic blood test but, that’s just a calculated guess. I’m driving myself today- FREEDOM!
I’ve rediscovered little raised bumps on some of my fingers, I say rediscovered as I have had them before and then they usually just disappear. It seems I may have Pompholyx, or dyshidrotic eczema- itchy bumps or blisters on the fingers that come and go. Now I have cancer I feel everything needs a close eye, including things I had before and didn’t really give a second thought to. Now it’s on my elbow too.
So, todays appointment was really just a regular 3 weekly check in to see how everything is going with my therapies. All is going ok,I guess. Had my bloods taken, eventually, it took 2 nurses, 3 attempts on 2 arms- for a regular blood donor I certainly didn’t want to part with it today. The genetic blood test takes around 8 weeks.
Tues 19th December
Seems funny having a Tuesday with no therapy, already it’s become the norm. I cracked on with some work from home yesterday and, more of the same today. When I do that then I really miss it- the place, the people, the face-to-face interactions. I miss it so much.
Wed 20th December
I woke today at 5:30am and felt a sadness, not a heavy weight-of-the-world sadness, but a sadness none the less. I thought maybe I could describe my feeling as malaise, sounds like a good word, but, I checked, and that’s not what I am feeling. I immediately reached for a dictionary, you won’t be surprised that they are one of my most used reference-style (although, like most of the planet, Google is now my top search engine) and I have packed them all (yes, I have more than one!) ready for the move. Back to Googling and it was quite hard to find the right word for my emotion. I settled on glum – marked by an atmosphere lacking in cheer, yes, that’s the one. I feel glum.
Everyone is always commenting that I am generally a positive person, so the glumness didn’t last long, by the time hubby had driven me to my therapies in Cardiff at The Hospital of Hope for 9:30, I’d shaken them off, I told you I’m normally positive! Hubby returned home, it’s a long day of just waiting around for him, it’s a long time to leave the dog and, I prefer to be on my own and just get on with it anyway. I settled into the now familiar routine, loose-sleeved cardigan or jacket off to expose my picc-line, poncho or shawl on so I still stay warm. Therapy bag in reach at the side of my recliner chair. Shoes off and replaced with a second pair of fluffy socks which are various styles all involving neon pink, a gift from work which make me smile when I put them on. Phone and drink on side table. All set, Ding! Ding! Round 4!
The various nurses were humming around the ward, attending to people varying needs with kindness and a feeling that they want to be there, doing this for you. That you are important and special. They are all lovely. I was approached by a new lady in white uniform who said she was from the Complimentary medicine department and asked if still wanted the reflexology I’d been referred for. Is the Pope a Catholic? Do fish Swim? Does Autumn always follow Summer? That last one made me ponder as I’ve worked with some children called Autumn and some called Summer and the answer in that instance would be no, but you surely get my gist, I did not need asking twice! She went away to gather my belongings whilst the nurses sorted my checks ,pre-meds and got the cold cap ready. I have my picc cleaned and dressing changed, I have my line flushed and antihistamine tablet and another fluid I can’t remember in my picc. The white angel came back. I did enjoy reflexology before, but the last time will be around 10 years ago maybe more. A dear friend in Leeds was trained and used to “do my feet” regularly for around 15 years. An investment in Me Time even way back then. The Me-now sends congratulations and thanks to the Me-back-then.
The white angel explained that she had chosen bergamot and frankincense, how very festive, to help with sleep and general wellbeing. She set to work and instantly I drifted into a state of bliss, what a wonderful feeling and even more as it was a surprise. She carried on for about an hour - Farewell Glum, hello happiness!
Next it was cold-cap fitting- hair dampened with a spritz of water, smothered in coconut conditioner and a bandage fashioned into a temporary head band to protect forehead and ears from the intense cold. Then the plastic inner cap which looks remarkably like a blue brain as it has gel running along brain-like channels inside it was slid firmly into place. It’s quite heavy due to the amount of gel. Then comes the final assault on fashion- the outer cap. It reminds me of a jockey’s hat, the bit that covers their riding cap. Mine is a boring light grey affair with a string pull to tighten into place complete with chin strap. The various therapy drugs in today’s cocktail began and I settled in with a snack, a cuppa and my chemo crochet cardigan.
Lunch sandwiches were brought around at 10:30! So I chose ham and cheese but I did manage to resist it until 12:30.
A nurse came around the ward to explain that Santa was visiting the hospital today. As usual he does not travel alone but this Santa had an unusual band of happy elves in tow. He was to be accompanied by soldiers from the Welsh Guards and by press photographers from Wales Online so did we give our permission to be photographed? I agreed to this, presuming they would probably pick on one of the other patients wearing make up and NOT wearing a cold cap- I was later proved right in this assumption . Santa duly arrived and the ward was filled with about 20 extra people in various uniform. Santa himself was very good, quite traditional, real white hair, beard and spectacles, he looked a lot like Richard Attenborough in the Miracle on 34th Street only better. He had a fur hat circled in holly and berries, a red velvet fur trimmed coat, green velvet trousers and black boots. He looked the business but did divulge to me that he rather regretted his attire for visiting warm hospital wards, bless his heart. He gave me a lovely gift of chemotherapy-friendly toners and creams. When two soldiers came to see me I asked whose hat they thought was least comfortable, theirs or mine. One as wearing a tall bearskin, he had to duck to get into the room and the other was wearing a golden helmet resplendent with long red plume – we all had a tight-fitting chinstrap in common at least. The second guy, I noticed, was wearing ceremonial spurs. They both agreed that all our headwear that day was uncomfortable but that theirs was slightly more impressed than my effort. I then felt duty bound to engage these guys in “regimental conversation”, the very thing that makes me roll my eyes internally when my hubby does it with what seems like everyone he ever meets. Even a plain old civvie like me could see they could not possibly be from the same regiment. The first was indeed, from the Welsh Guards and the second explained slowly that he was from the Queens Dragoon Guards saying, “you probably won’t have heard of them”. “What?” I replied, “you’re in the QDG?” I think he was taken aback that I not only had heard of his regiment but that I knew enough to shorten it. This was my hubby’s regiment so we chatted away about where and when he served and who they might know in common. The entourage left before I had a chance to chat to the current RSM who had been monopolised by the guy in the next bed talking motorbikes. I just got a smile and a wave as they left. It turns out that my hubby knew that man’s father and also the man himself when he was a little boy. I wish I could’ve spoken to him. It’s a small world, definitely less than Six Degrees of Separation in this instance.
I ate my lunch and the therapies seemed to be over very quickly today. I left with 3 “gift bags”: one from Santa, one from the ward full of tablets and injections, and another from the pharmacy with some emollient cream for the eczema developing on my elbow and hand. I had accepted one of the many offers of lifts I received, this time form a great friend I used to work with. I was finished with around three quarters of an hour to spare before she was due to arrive so I popped next door to the Maggie’s centre for a cuppa and some festive snacks. There I spoke to one of the volunteers, herself a previous cancer patient, who was a retired teacher. I find that a lot in life, I generally struggle to strike up conversations voluntarily with strangers but, those that I do engage with tend to come from a background of working with children or families, there is obviously an invisible pull there that I can sense without knowing. It happens too often to be a coincidence.
My day ended with an hourlong car journey with my friend which gave us plenty of time for a proper catch up. I really appreciated that; I really needed it too. My day may have started with a bit of glumness, but it quickly turned into literally one of the best and most relaxing days in a while. Super proud of myself for chatting normally with all those strangers which has given me a bit of a good vibe, plus the steroids kicking in, I guess!
Thur 21st December
Didn’t go to bed until after 1am, just not tired. Then up at 4:30 and feeling wide awake and alert. Caught up on some work as I’ve realised that, as long as I put the hours in when I feel able, it doesn’t have to be between 9-5. Can’t be ringing anyone at 5am though, wouldn’t go down too well! The day following therapies I am usually still quite “wired” (or should that be weird?), and today is no exception. We have dear friends arriving today from Kent who are staying overnight. They are so lovely that it will be a real tonic to spend time with them. Bring on the quality time! I am grateful too that its just one night, as day 2 has been the beginning of my “dip-days” in the past. We had a lovely time as I knew we would, I always feel so relaxed in their company. This lady is a member of my lovely little white witch coven. We walked the dog, had an hour in the quiet pub and home for cheese and biscuits followed by christmassy sweet treats and lots of reminiscing, general banter and a little future planning thrown in. Perfect.
Fri 22nd December
During the night I was visited by The Ghost of Christmas Heartburn, a condition I’ve never really suffered from before. I’m putting it down to all the cheese and chutneys so hopefully it will wear off soon.
Yesterday I won some Pinch of Nom swag by posting a photo and some blurb on their Facebook page. Happy Days!
The comp was people posting photos of all their PON books so, I gave it a go. I truthfully told them that we were moving house after Christmas and that we had packed away ALL of our many books except theirs, as I couldn’t possibly manage without them for 2 whole weeks, and I posted a pic of 6 of their books on an otherwise obviously empty bookcase. I said that my children always buy me the latest PON and that this has made their gift buying an easy ask!
Today I am not yet feeling the Chemotherapy lethargy. I am currently watching the Mid-Winter Solstice which is being streamed live by English Heritage. What a magical place Stone Henge is, I’ve visited a couple of times, once in August and the other in January on my birthday- both times were bloody freezing! I need to return on a warm day so I can sit on the grass with a picnic and take it all in slowly instead of being wrapped up and rushing around to keep warm.
Its also undeniable that hair loss began in earnest today, more than a good handful came out with me just running my fingers through it. I’ve been using a zero-ph. rosemary shampoo and got myself a wide-toothed comb but this was just when you run your hand through your bed hair. I’m still really not sure how that is making me feel. Since Day One I thought “I’ve got more than enough headwear already. It would be good to rock out a dino headscarf like a little Jurassic pirate, bring it on. Let’s get the hairdresser to shave it off and get cracking”. Well, I did ask the hairdresser for a shorter cut, which actually suited me more than I thought it would. When it grows back there will be no more hair dye either I’ve decided.
Yet now, its really happening, and literally by the handful.
Sat 23rd December
Shattered and in bed by 9pm last night, I think it just took everything I’ve got to play host to our friends for less than 24hours. At least I did it, and we had a lovely little time. I was so sad when they left. Sad they were going and sad my hair is going now too. On a plus note I’ve not lost any actual noticeable clumps and have no bald patches and at least the greys are coming out with the darks!
To keep busy and distracted I started on a little Christmas tree mosaic glass project. Follow the design on the box or make your own design it said. Well, this first timer thought she’d better follow the box, only to realise this couldn’t be done with the tile selection I’d been allocated, so I had to go off piste and design my own. I am so glad I did! Now its unique to me and I love it. The beautiful little glass and ceramic tiles are known as Tesserae-which is the Latin word to describe mosaic pieces. When hubby and I visited Pompeii a few years back, one of my “must sees” was the famous mosaic in the entrance to the House of the Tragic Poet. Depicting a large dog with the words “cane cavum” meaning “beware of the dog”. I now have it as one of my many fridge magnets. Another of my favourite “Latin” phrases is “carpe cocoa” which very loosely translates to “seize the chocolate!”
Wide awake and up by 3:30am today. More handfuls of hair and some heartburn during the night. Hubby got me some antiacid tablets yesterday which seem to help.
I stopped to realise that all day, all thoughts, its nearly all cancer. Its underpinning every thought almost, every decision, every action, every plan. Its all consuming and its not going to go away yet a while. We start to move house soon hopefully and will be all done in just over a fortnight from now. That’s pretty incomprehensible I have to say.
Sun 24th December
Christmas Eve 2023.
Yesterday was awful, I felt like I got weaker and weaker and the cancer got stronger and stronger. I definitely was on the losing team yesterday. I had the worst bath of my entire life- and I do love a bath. So much that I wouldn’t move home without one! Anyway, I hate asking for help, I hate it. I had to ask for help putting my plastic sleeve on before bathing and then, because I felt so very weak, I asked for help bathing and hair washing too. It made me feel so very useless, so very ill, but I was just too weak to do anything other than sit and cry whilst my hubby discovered that shampoo goes on before conditioner! He bathed me like I was made of porcelain and I could shatter at any moment, and I guess that’s how I felt. My hair had been coming out all day. I don’t know what I’d imagined, maybe a clump of hairs on my pillow or in my hairbrush? I’d stopped brushing it really, just using a wide toothed comb or my fingers gently. But that was it, every time my fingers touched my head and gently stroked through a handful of loose hair appeared before me. Now there are hairs on the sofa, in the bathroom, hairs where I sit, hairs everywhere I go. I just scoop them up and put them in the compost bin. Always reduce, reuse, recycle!
Today started no better. So weak, so very very weak. I went to bed at 9pm last night and woke at 3am for the bathroom. I did manage to return to bed though and finally woke just after 7 today - and that was after nodding off all yesterday. When I woke, I felt like I’d just spent a week in the Gobi Desert- headache, dry mouth, cracked lips, couldn’t swallow. I shuffled downstairs and went straight for my migraine meds. I made a tea, always my first and second drinks of the day. I made it but I couldn’t face it. I made a litre of orange and mango squash and sipped on that instead. The tea remained until lunchtime, staring at me, reminding me that the cancer is changing everything about me. When will I next be able to wallow in a bubbly bath with candles and music- cancer has taken that already with my picc line and my exhaustion. When will I be able to taste anything- everything now is a texture and a memory of what it should taste like. Way out in front of my love of a bath is my love of food. And cancer has taken that too.
For breakfast I tried poached egg on toast, and I really concentrated on trying to capture the tasty egg running over the homemade brown bread. For lunch I tried crumpets with Marmite and cheese, that worked. Had a mince pie I just couldn’t taste, if my eyes were closed, I wouldn’t have known what on earth it was. For tea it will be chicken pasta with lemon and capers. Hubby suggested that it might be Covid- I didn’t think so but did a test none the less- all clear, I don’t have Covid, I have chemo-taste. Something between nothing and metallic. Whatever it tastes of it sure isn’t food!
Christmas Day 2023
Yey hey! Cancer for Christmas. Who would’ve thought it this time last year? Not me that’s for sure. At least the dip days for this week have finished and I feel well enough to go give the dog a proper walk. The severe loss of taste has maybe subsided a little along with the total exhaustion thankfully. Hopefully I will taste the Christmas dinner I am making.
Cancer 0 : Christmas Dinner 1, hurrah, Good triumphs over Evil!
I could taste enough to know it was a great Christmas dinner, even the dog agreed, and I could definitely taste the Bailey’s in the extra thick cream I dolloped on my hot Christmas pudding. Thankfully the recent heartburn has also taken a back seat. Spoke to and/or video-linked to my children and my siblings, mostly managed to keep my emotions in check too. My brother in Norway opened his door for the big reveal- SNOW! Gorgeous to look at, and with one bare footprint because he’s like that, although he does have 2 feet!. A day watching harmless Christmas TV, another dog walk and it was over. I mostly silenced the little voice who spoke of the writing in red (“what if that’s your last Christmas Day ever?”) and I’ve kept that to myself.
Boxing Day 2023
It’s so very tiring thinking of cancer every minute of every day. It has permeated my very being. I’m thinking about my energy, or lack of, my taste, or lack of! My hair, you get the gist…. Can I walk the dog? Can I drive myself? Will I ever have a day again in my life where I didn’t think cancer at all in those 24 hours? It doesn’t feel like it can ever be that way, even if I get an all clear. But its such early days for me I know. 4 months ago it was 26th August and I had no idea, absolutely no idea. My biggest thoughts then were suddenly having a dog in our lives, a new job on the horizon and waving goodbye to the depression that had gripped my summer like a dark cloud.
Luckily, today, I can walk the dog and I can drive myself. So, I did just that. Me walking the dog means he gets a proper walk and me driving myself to the Hospital of Hope on Boxing Day 2023 meant that my hubby could wait in to greet his youngest, even if she didn’t actually arrive until 10 mins before I returned home, the option was given to them by me at least. The 2.5 hour, 70 mile, round trip was for my bloods doing prior to therapy tomorrow.. The waiting room was heaving and I very nearly got to see what happened when they take blood via your picc line, but then another lady needed my nurse so they took my bloods the usual way from my left arm. For the last twice now they have noted a juicy vein but then found it difficult to draw blood from. That makes me feel sad and slightly cross as I’ve always given my blood so freely up to now with never any problem. Oh well, she got it at second attempt, so not as bad as the poor lady opposite who was on the verge of tears.
The rest of Boxing Day was taken up visiting our lovely neighbours and having a pleasurable and relaxing time. Nice company, nice food, and, as I often am, I was the only one not drinking. I know I could drink if I wanted to, in moderation as NHS always advice. I just don’t really want or need to. I’ve seen the baddest of the bad things alcohol does to some people plus, as a migraine sufferer, my head really needs no further encouragement to inflict pain. “What’s your drink of choice?” I was asked “when you are allowed?” – I know people think you have to be told to abstain or else why wouldn’t you drink at a social gathering but that’s really not the case. I don’t bother correcting them and usually reply “tea”, as I did here, to which they usually giggle politely, which they did here.
Wed 27th December
Therapy Cycle 2, week 2. Less drugs in my cocktail in weeks 2 and 3 so takes a little less time. I was there from 9am until 12:30 so just 3 and a half hours, hardly time to pick up my crochet, especially as I also squeezed in a “little nanna nap” as my younger sister insists on calling them. I will continue with the cold cap. I’ve joined a closed Facebook page with almost 10,000 members from across the world and where all participants replies to my query about whether or not to continue now handfuls of hair was coming out was a resounding “keep going” and “stick with it”. Looking at my specific cocktail there is more or less a 50/50 chance of hair loss but the benefits seem to be more about protecting the hair follicles and so promoting better regrowth. Again, I will be using a change in terminology from now on. Hair loss to me conjures up some Rab C Nesbitt character with a bald head and a long over comb, or Yul Brynner the actor, Duncan Goodhew the swimmer, in fact hair loss means men, not me. What I am experiencing is shedding. This word I feel better about. Shedding means temporarily losing something that comes back: some trees shed their leaves only to come back more glorious than ever in the Spring, my snake sheds his skin as he grows and becomes more shiny and beautiful. I am in my Autumn/Winter period, I am shedding, and I will come back more glorious and beautiful (and most likely peppered grey )
Thu 28th December
Big hypothetical question of the day: How can I stop myself from saying sorry when I don’t need to and actually I really shouldn’t?
If you bump into someone in the street, say sorry, its common courtesy. Just like saying thank you if someone holds a door for you. Those are two perfectly valid human interactions in my mind, and it does annoy me when others don’t apply common courtesy through their daily lives. I also apologise when I don’t need to be sorry, when its something beyond my control or not my fault. Then I feel guilty for saying sorry and suddenly I have two sticks to beat myself with, not just one.
“Sorry, not sorry ‘bout what I said, I’m just tryna have some fun. Don’t worry, don’t worry, don’t lose your head, I didn’t mean to hurt anyone. LOL say oh well or go to Hell. I’m sorry not sorry ‘bout what I said, don’t lose your head” – “Anne Bolelyn in Six”.
Another annoyance of mine is people asking “what?” when they do not hear you. My dear Nanny would always pull me up for asking “What” when I was little, and it does grate somewhat even now when I hear it in the context of a one-word question. “It’s not what, its pardon” she would gently chastise, “Watt’s up town holding his hand out”. This was a reference to the famous statue of Watt, Boulton and Murdoch, the engineers and manufacturers who played a major part in the Industrial Revolution which was unveiled in 1956. The town she referred to being our hometown of Birmingham. In my late teens I would get the bus “up town” with my brother to Edgbaston to watch the cricket. Our second bus on the short journey back out of town to the ground would pass the statue which I always felt was a bit out of the way. Apparently it had been erected temporarily outside Birmingham Register Office in 1956 where it remained for another 50 years before being restored and regilded and eventually sited in a new, and I feel, more prominent position in Centenary Square. In the 80’s the highlight of our bus trip would be to guess which one of these prominent Industrialists would be wearing the bright orange and white traffic cone on his head. There was always one, and sometimes two of them. Never failed to raise a smile. I wonder if that still happens now. When they were dulled by years of inner-city life they seemed fair game, but now, in all their shining golden glory, would it be the same?
Someone close to me often says “Wha?” not even the whole word and its only 4 letters for goodness sake. Occasionally I do reply “pardon?” but maybe I should take a leaf out of my old Nan’s book, it certainly worked for me!
In other news, we got the keys to the new place yesterday! I immediately packed two shopping bags with essentials that I can leave there tomorrow. No surprise now to find they contained tea, mugs and travel kettle (why exactly did I pack that away?), a CD player and chocolate. There is my life in a nutshell, well a Tesco bag for life featuring Snoopy, but you get the picture. Plan is, first do a reccie now its empty of the owners belongings. Hubby wants to move things from our shed to hers. I have made a plan to help me to focus on what I can do rather than get frustrated about what I cant. My plan for today is moving houseplants (no mean feat as I have around 50 at my last count!) and tidying out the greenhouse which is long long overdue.
The plan to move the houseplants worked: they got bagged, moved, and put out on kitchen worktops – I do have a lot of plants, yes, but this and walking the dog completely did me in for the rest of the day. The afternoon was not spent in the greenhouse but on the sofa, fast asleep. Hubby did loads and moved a lot more stuff in boxes thankfully. After a discussion we made a joint decision to sleep in separate beds last night. No offence to either party was meant or was taken. I definitely had a better night’s sleep.
Fri 29th December
I awoke at a much more humane time of 7am. The hair shedding seems to have slowed down, although still more in the comb than you would usually expect. I’m back trying the other anti-sickness tablets, I still am having a bit of heartburn but not too much. The 3 mornings of injections will start again today and these tend to coincide with the tiredness. I think that’s because they kick in to boost my immune system when its been depleted to its lowest, rather than the injection being the cause of the fatigue. I saw a TikTok my niece had done about her greatest fear being “not spiders, not ghosts, but losing my Aunty to cancer”, I cried.
The only plan for today was walking the dog, a little bit of shopping and change of address with our banks. I managed these most successfully… then slept for really the rest of the afternoon. Too tired to read, crochet or watch tv. Just too tired. Even though I’d slept on and off all afternoon I was still ready for bed by 9pm. How can I sleep so much and still be so tired?
Sat 30th December
My daughter was due to be here to help with packing etc but she got stuck up in Yorkshire with the weather. I know her being here would’ve been a big help, but I’m also glad she isn’t seeing me in this state. I slept from 9pm last night to 9am this morning. Although I have had severe diarrhoea and some retching which has kept me dashing to the loo all night. My mouth was so dry and my lips were gunked up but I couldn’t keep any fluids down. Hubby reminded me that I should ring the Emergency Line about that, so I did and just waiting for a call back now. Nurse said I was right to ring, that its always right to ring She asked me a few questions to triage and said I’d get a call back with what actions I should take. By then I had eaten a little toast (my go to food if all else fails. I would take a toaster with endless supply of electricity, thick white bread and best butter as my luxury item on Desert Island Discs!). I decided a shower might perk me up and, of course, that’s where I was when they rang me back. It was agreed that I’d probably seen the worst of it now, if it returns I am to ring back, otherwise they will check in on me tomorrow.
I was too weak to do anything at all again today. Its SO frustrating. Hubby is cracking on with the move, a few boxes at a time, when he’d rather be sat watching. I’m sat watching when I’d much rather be doing. Very frustrating.
Sun 31st December
My body clock has never been as askew as since I’ve started treatments. I am now up at 4:45am making poached eggs on toast as I’m wide awake and hungry.
TNBC: that’s what I have. It stands for Triple Negative Breast Cancer.
When I first joined the Macmillan Cancer Support group online I had no idea what all the letters meant that everyone bandied around about their cancers or treatments, I still don’t know a lot of the code but I’m picking it up as I go. During my consultation when my surgeon told me it was cancer the nurse wrote everything down, obviously they are used to telling people earth-shattering news and them not being able to take it all in. So anyway, I have Grade 3, Invasive cancer (ductal). Tests now show it is Oestrogen, Progesterone and HER2 negative, hence triple negative. I have one metastatic node. Each year 55,000 women are diagnosed with breast cancer in the UK, 80% of women diagnosed are over 50. Grade 3 is high grade cancer which means the cells grow more quickly that grades 1 and 2. TNBC affects 1 in every 5 women diagnosed with breast cancer and is more common in younger women.
Breast cancer starts when cells in the breast start to grow in an unusual and uncontrolled way. Most breast cancers are invasive, with potential to spread to other parts of the body. It doesn’t mean it will spread and treatment is to stop this from happening. Chemotherapy is a systematic treatment which this aims to destroy any cancer cells that may have spread from the breast into the body through the bloodstream or lymphatic system (I have 1 irregular lymph node). Immunotherapy is also a relatively new kind of systematic treatment. I think it is because my cancer is aggressive and faster growing that is why I will have chemotherapy and immunotherapy first, before any operation, to really get in there on the attack and start to fight this thing within me. Next will be surgery.
Monday 1st January 2024
Well, that’s it then, 2023 has been and finally gone. Certainly up there with some of the worst years of my life and in real contention for the Number One spot. I’ve tried to stop thinking that things can’t get any worse, after they did, but that’s it now, a line is being drawn under 2023. Its gone and will never return.
In just one week we will be moved (and in 3 weeks from now, in just 21 days time, we will have our new bed!)
Of the 8 Christmases we spent here, for the past 6 I have vowed that year would be the last I spend in this house. Now its finally here, this is the last Christmas I will spend here. Its not that I hate the house- the location is amazing, but we were never supposed to stay, it was sold to me as a temporary 2 year deal while we found the right place, which this so obviously wasn’t. No one ever told me any different, no one sat down and said the plans had changed so I have always looked at it in that way, never a forever home, never somewhere I can root, always a stop gap and that hasn’t been good for me as a person. The next place is still a rental, but my approach is different. I feel I was somewhat hoodwinked by default, by inaction, into still being here 8 years on, maybe I shouldn’t have gone along with it for as long as I did? In the end I did step up, “be the change that you wish to see in the World” – Mahatma Gandhi. I was brave, I made decisions that were totally out of character in an attempt to be that change. The cynical part of me could say that I was foolish, not brave, and look where it’s got me. The realist part of me could say I was brave, not foolish, and just look at where its already got me. I am being the change I want to see.
Alchemy -“ a seemingly magical process of transformation, creation, or combination”
The coronavirus pandemic that swept the globe in 2020 became a catalyst for many people in many ways. I was busy planning and looking forward to completing a charity walk along the length of Hadrian’s Wall, my two children would accompany me, we had gone as far as booking the accommodation along the way. Then, the whole world stopped. At one point, virtually the only freedom anyone had was being able to walk for an hour from their doorstep. Now this WAS a time when I realised just how lucky I was to live in an Area of Outstanding Natural Beauty, and I would religiously walk every single day. I was still working as front-line staff in Childrens Social Services: although the lion’s share was suddenly home-based, we did still visit our most vulnerable families. Such strange times that even now it doesn’t seem real.
Even in such a stunning location, the same couple of walks-from-my-doorstep were at risk of becoming mundane so I made my own amusement which I then just happened to share on social media. It was all based around things I saw and photographed whilst out walking, things that interested or amused me. I didn’t really think too much of it, other than the fact that I found it fun to do and gave me a bit of a focus or brought a challenge to my very limited life choices during that time. I remember photographing all the letters of the alphabet taking inspiration from street signs, notices, car registrations (how else would I get an “x” in a little Welsh village?). I did lower and upper case (these were desperate times!), I did numbers, I invented Bridge Bingo (every canal bridge has a unique number), I shared “Styles of stiles”, (quite surprising how many different ways there are to overcome a fence) some days I would photograph everything I saw in yellow, or blue, I linked images to quotes or lyrics, you get the gist. I did something like this most days, rarely planned, I just worked with whatever idea popped into my head, pimped it up, and shared it. I always figured that it amused me so that was ok, if it did or didn’t amuse others, that was their choice, if they didn’t want to see they would just unfollow me, no great drama. During this time, a few people commented positively on my meanderings, so I kept going, for better or worse. As time went on, I had people contact me directly thanking me for my posts, describing them as uplifting, a little ray of sunshine in the darkest of days, urging me to continue. This took me aback; I had no real idea of the impact I had been having. I could go on at length but to cut an already very long story short, these posts rekindled a friendship from my grammar school days over 40 years ago. Actually, way back then we were just classmates rather than anything more but I am so very happy that coronavirus brought us back into each other’s lives, the virus wasn’t all bad after all. This beautiful person has since become a dear friend and they introduced me to The Alchemist by Paulo Coelho, telling me it was a “must read” for someone like me. I have always loved books and reading and when someone dedicates and gifts me a book, I do take it very seriously. I read the book, and I didn’t get it. I knew there was a message in there somewhere but it just didn’t reach me. Mildly frustrated (as I knew I was meant to get it and hadn’t), I placed it on my bookshelf. Inspired by a work colleague at that time whose perspective on life I really admired I was also reading a few different self-help, motivational type books. Eventually I revisited The Alchemist, something I rarely do is re-read a book, but I was searching for the connection, the meaning to me personally and the second time I found it! What I take from this story is that you should trust in yourself, follow your path, even when it really doesn’t seem to be heading in the direction you think it should, keep going, believe. You will eventually get to where you need to be even if the journey there was the most unexpected and indirect you could imagine. Have faith in yourself. I will re-read this book again and I know I will find even more meaning the next time. It really is more than a story about a boy and some sheep.
Tues 2nd January
“One day you’ll look back and realise how hard it was, and just how well you did” – Charlie Macksey
I’m up early again as I am most days now. I was blaming the steroids for this, but I just don’t know. Maybe once my body has replenished enough from the day just past I wake as there is so much going through my mind non-stop. Maybe I need a longer awake time to get my head around everything? I don’t know. I hope that I do get to look back one day on how well I did. That will mean I am still alive.
So many possible symptoms and side effects that I do feel I’m treading a very thin line between being sensible and being paranoid:
Constantly uncomfortable nostrils with tiny bloody scabs rather than any real bogey- lowering the tone but how else can you say it? Is that because of therapy?
Now I’ve got itchy feet, actual not metaphorical, I just want to rub my feet back and forth across some rough carpet to relive it (why is it that scratching relieves all other itches but not those on your feet I wonder?) Is that because of therapy?
My mouth and most food tasting like metal- that is because of therapy. Food is textured fuel for my body at the minute, sometimes I can taste but I think that’s more my mind and my memory telling me what I should be tasting rather than my actual tastebuds. Everything tastes like what licking a battery must be like, its like my tongue has an invisible metal cover.
A 24-hour diarrhoea episode- possibly due to therapy, possibly purely one of those things? Hubby encouraged me to ring the Cancer Alert Line for this one, they were brilliant and supportive, advising I was right to ring, but the moment passed after a day so I’m sure I’m back on track again now.
At least the hair shedding seems to have reduced back to a more normal daily amount.
Complete and utter exhaustion on my Dip Days- that has to be due to the Therapy. That kind of tired is like no other.
Cancer has committed the crime but the list of possible related suspects who are aiding and abetting continues to grow. At least these are fairly manageable.
Meanwhile the house move continues as Hubby takes a steady stream of boxes from one place to the other. As yesterday was a good day, and as I’m usually The Do-er in the relationship, I had taken real delight in feeling well enough to assist. Although I quickly realised that I was probably doing too much and, fed up of encouraging him to accept any one of the offers of help we’ve had, I took things into my own hands and got the neighbour onboard. It was such a help. At the end of the day, neither of us is currently capable of doing all the heavy lifting on our own. I am forever telling others that asking for support is a strength. I knew I was risking denting his ego but it needed to be done and, seeing as hubby and the neighbour already have a serious bro-mance going on, I’m sure he was secretly a little grateful!
I am fully aware that I am a Master of Distraction Techniques. Six years of an Open University degree course taught me that as well as a lot of other life lessons, alongside the actual knowledge I gained. Since my cancer diagnosis I have been aware of the many distractions being strewn across my path like rose petals: learning the terminology, the acronyms, remembering all the different medications, learning my way around 4 different hospitals, learning how to self-inject, coping with all the side effects. At first, the new job was the best distraction but not being able to go into school has put paid to that. Christmas is always a distraction from the norm and now the house move too. At the back of my mind is a little niggle- what will distract me once we’ve moved? I guess at first it will be settling in, finding places for everything. Hopefully by Spring I will be well enough to garden. I think I have just caught myself thinking beyond the full stop!
I am settling into my medication and therapy regime, I am not able to go into work right now, the house move is going well and will last for another week. FULL STOP ●
January is reported to be the saddest most depressing month of the whole year- not helpful when that is also your birthday month! Blue Monday, apparently THE WORST and most depressing day of this most depressing month, is in 14 days time. So there’s somethingng look forward to….NOT!
Wed 3rd January
I thought I’d write of a typical day-in-the-life of me at the moment. I recorded the day and thought it was not really a typical one. Bit then I realised it was, as there is no real typical day when you have cancer, have therapy with all its related side effects AND are in the middle of a house move! So, here it is, my typical, atypical day-in-the-life:
03:15am. I’m wide awake having gone to bed at 10:30pm last night. I did try to stay in bed for as long as I could but then needed the bathroom. Before, I could return to bed and sleep but now my mind is too full of stuff to do that.
03:30am. Get up, bathroom, cup of tea, do some crochet
03:45am my second cup of tea crocheting and listening to Martin Kemp’s Autobiographical audiobook.
04:45am My third cup of tea with silent crocheting as I need to concentrate on this bit!
05:45 My fourth cuppa of the day already whilst taking immense pleasure from watching the dog sleeping. So gorgeous. I have already drunk 1 litre of liquid today- albeit tea, Elixir of the Gods!
06:15 Exchanging messages with my sister, shes always up early to go for a run with her dog
06:30 Breakfast and my fifth cuppa of the day- I am very thirsty this morning.
07:15 Daily time on my Welsh language App for 15 mins then got dressed
08:00 Walked the dog
08:50 Hubby dropped me off for therapy at the hospital
A Therapy Session:
09:30 Nurses cleaned and changed my PICC dressing. Gave me some anti-histamine prior to treatment: one oral tablet and one liquid Piriton via a drip line into my PICC. I drink from the litre of squash I take with me throughout my session.
10:15 PICC line flushed with an injection of another liquid directly into the line, takes seconds
10:30 Cold-capping process begins. My hair is sprayed with water to dampen it and smeared with coconut conditioner to prevent the inner cap from sticking later whilst helping it to fit well. It must have around 20 mins cool down time before the actual chemotherapy drugs are put in. Between the nurses and me we have discovered that I need a medium inner cap under a small outer. This might be due to hair loss or just my head shape. Either way it felt a better fit. Given a cuppa in a proper mug- it’s the little things. I am busying myself today with my puzzle book, not in the mood for the crochet I’ve brought along or the mini jigsaw puzzle.
11:00 Therapy begins, liquids into the PICC line.
11:30 I ate the chicken and mayo on wholemeal sandwich the staff brought around earlier.
12:00 End of chemotherapy- only a small cocktail as its session 3 of 3. The big cocktail is always session 1 of 3.
PICC line flushed
12:15 Cold cap put to de-frost! This takes 45 mins and I use it as an indicator to le hubby know to set off back to collect me. I’m given this week’s self-injections and top up meds before leaving with my woolly hat on to keep my frozen head warm, plus it covers the indignity of my conditioner smeared, rapidly greying, icicle hair
1:45pm Arrive home, have some snacks and a drink
2:15pm I take the dog over to the new house to familiarise him. We stayed until 5:15, moving and sorting stuff out whilst trying to keep to Light Duties only.
5:30pm. Returned home to make the tea (a pre-planned, pre-cooked meal, just heat up in the microwave), I also washed up (we usually say the cook doesn’t wash but today I felt wired and offered to do it whilst I was able, knowing there will be 3 days coming up where I’ll feel like doing “jack”
6-7pm Sorting ot and boxing up the kitchen cupboards
7-11pm. Watching tv and crocheting but still wired, chatting animatedly to Hubby, twice he told me to “slow down, calm down, relax”. I joked that if this feeling is what drug takers get no wonder they do it.
12 midnight I thought I’d better go to bed now, as I had been up for almost 21 straight on this typical, atypical day.
Thu 4th January
Spent the main part of the day over at the new house. My friend came to help, I know I got just as much from her company as I did from her practical support and the delicious sandwiches she brought. Suddenly felt very tired at 2pm, returned home and promptly slept for 3 hours!
Friday 5th Jan
I felt well enough to meet up with the girls for lunch. It was nice. Looking back, I even managed to walk into a pub I’d never been in before, alone, and join my friends without stressing too much about it at all. The Big C can put your life in perspective. I’ve got worse to worry about now than a few strangers possibly glancing in my direction.
I knew I’d end up doing too much, it takes a lot out of me now just to act normal. It was a lovely meal and I could actually taste it which is always a bonus! I had a lovely time but was shattered afterwards. Had a sleep. Daughter arrived to help for weekend. We ate and I promptly fell asleep again. Oh well, everyone just has to understand how I’m not being rude, it’s just so tiring some days trying to keep afloat.
Sat 6th Jan
I awoke at 5am but after having 8 hours sleep. My nostrils get so uncomfortable during the night. I woke again to dry nostrils full of bloody scabs which are too uncomfortable to leave alone. Turns out that some breast cancer treatments can “affect the lining of the nostrils, causing them to become excessively tender, bleed and form scabs”. That’ll be another tick in the box for another symptom then. Who knew? This usually coincides with my lips being covered in a thick layer of gunk that you feel like you need to scrape off. Charming, eh?
Today was a good day. By that I mean I felt it was productive. Between us my daughter and I managed to disassemble and then reassemble the double ottoman bed including hydraulics. I just knew she’d be an amazing help, practical, logical, calm, and she knows how to DIY, exactly the kind of helper I need. So proud of that girl. Besides a couple of times where I knew I just wasn’t quite up to the job (as in feeling too weak) we did amazing. I haven’t felt as ill as I’ve expected to this weekend- Fri,Sat,Sun are usually my dip days and I’m really surprised that I’ve managed a meal with friends and getting very proactive with the move and all without feeling too bad. Tired, yes, falling asleep on the sofa, yes, but nothing like I have been on my dip days. I’m sure it’s the power of family and friendship that’s getting me through this weekend so relatively unscathed.
Sun 7th January
Another busy and productive day. Before my daughter returned home at lunchtime, we did a couple more trips to the new house with garden pots and yet more miscellaneous items. Having here her just for 2 days has been an absolute tonic. I do feel that this week’s Dip Days have been lifted by her presence, so much so that this weekend I can say that I haven’t really “dipped” other than falling asleep on the sofa at the end of the day.
Still so much to do, we haven’t even started on the outside yet. Removal van tomorrow for all the big furniture, although where exactly they will go in the house crammed full of boxes is anyone’s guess. Dining table and chairs also being delivered today, I’m hoping it stays dry as this item may be spending some time on the front lawn prior to entry. The neighbours will think The Mad Hatter is moving in!
And in Cancer-related news, I am now developing an eczema-type rash on my left elbow and forearm. I have gotten hold of a second-hand copy of F*** You Cancer by Deborah James. The blurb reads:
“It’s a helpful reminder that its ok to feel one hundred different things in the space of a minute as you navigate the big C, taking you through every step from diagnosis (welcome to the club you never wanted to join) to coping with family and friends, surviving the emotional rollercoaster and celebrating milestones along the way”
The club I never wanted to join.
The book I never wanted to read.
The illness I never wanted to have.
The burden I never wanted to carry.
The person I never wanted to be.
