Category: Cancer

Publish hide and apologise

…there was mention of MOTH holding the clippers still and me just twirling round in the chair.

Well, hi there. It’s been a while, I know. I’m going to start with two apologies: firstly, to everyone who sent me such lovely messages after my last blog. I am sorry I haven’t responded individually but I think I may have gone a little early on talking about things and ended up heading into a low mood for a while. I also have this dreadful affliction whereby I am a writer, who wants to produce things that people read, but am also, intensely, an introvert and am terrified of attention. This means, every time I press publish I effectively run and hide under a duvet for a while. (Currently, this is actually true.)

The second apology I want to make is to those to who I promised I wouldn’t talk too much about my cancer. I think I am going to go back on this. Sorry. Why? Because, as mentioned briefly in my previous blog, this is actually happening to me, I can’t ignore it and it would seem disingenuous to write about my life and not include it. But, also, because I have had so many lovely people say that they do find it helpful and insightful.

I will, however, keep some of the more ‘intense’ details for a later piece of writing. I am considering a book. Quite frankly, this is my second time doing this so I may as well try and do something useful with it. I am keeping a diary of my more, raw and immediate thoughts and feelings, and to give a sneak peek, I have just written this:

It occurred to me yesterday, when I was at the hospital getting bloods done and looking around at the others there, that one of the reasons I hate the bald/turban etc look is that it makes us cancer patients look entirely homogenous. Especially as when our eyesight gets bad we have our glasses on too and due to the intense bloating, we all resort to comfortable clothes And now, with masks as well, there is even less of us to see as individual people. We end up as pink, shiny, bespectacled, baggy sameness. Eugh! I had hoped to style my way through it this time, but I am heading the inevitable way. 

From this, you may well deduce that yes, it is the time of the hair disappearance. It has been more gradual this time but there has been significantly enough sloshing around the shower to make me realise – it was time! MOTH obliged with the hair clippers. I did cry. Of course I did. It took three years to grow my hair back to how I felt I wanted it. But, after the tears and with some Dave Brubeck playing we buzzed me down. As I was sitting on the office swivel chair dragged into the bathroom and with a towel draped round my neck, there was mention of MOTH holding the clippers still and me just twirling round in the chair. We didn’t do this but at least we had reached joking point.

So, to give a brief update. yesterday, I had number three of twelve weekly chemotherapies. It is a different treatment plan to last time so I am still getting used to how I am reacting. It is not fun. I am not having fun, but fun was not expected. But I have at least managed to get back to my positive mindset which eluded me for a while longer this time. So don’t worry, my blogs won’t be downbeat.

I am excitedly awaiting the delivery of some oversized loungewear today to accommodate the ballooning which happens as a by-product of some of the drugs. I have already purchased a cape-style coat (those close to me know how much I love a cape in all forms, I’m thinking I need a full on cloak next), however this was for practical reasons. I have had a picc line put into my arm as my veins are still too damaged from my last round of chemotherapies to have a cannula inserted on a weekly basis. (If you are squeamish, don’t look up picc lines. If you want gory details, do ask me 😉 ) But, I found that the bulk of the picc line and its dressings wouldn’t fit into the sleeves of any of my normal coats and with the weather now decidedly cold – I needed something. So a cape coat it was. It is yet another of the many, many extra things you don’t know you’ll need to think about when having cancer treatment, that clothing plays a larger part than you would imagine: hats, accommodating coats, baggy clothes (for when you can no longer do your trousers up), scarves, gloves to hold hand heaters in place before cannulation, eyebrow drawing on kits (we may need another full blog about me learning how to do make-up!), picc line covers, picc line shower covers… it’s an expensive business this cancer, add in parking and petrol for every appointment and, well, it’s best not to think about it.

But, regardless of all this I feel lucky. Lucky because I have MOTH the loveliest most supportive man on earth. I have an incredible family and the best of friends. I have you lovely lot, the cats of course and I am lucky because the NHS are simply more marvellous than I have words to express. I have also increased my cape collection.

Have you tried turning her off and on again. Again.

It would appear that the attempt to restore me to factory settings, three years ago, didn’t work and the genetic malware I inherited, although largely cleaned up, managed to leave a trace of virus behind. I honestly don’t know why I’m using a tech analogy, I am terrible with technology, but you get the gist, or if you don’t, it is this: I have cancer again. 

It is the same as before, just in a different place, ergo breast cancer but currently residing in my lymph nodes. I found out three days ago – it has not been a fun week! 

MOTH and I tried to think of an analogy for this on our way home from the hospital on the afternoon of getting the results after being asked by a couple of people, how it could be breast cancer, but not in breast tissue. Halfway home in the dark and as the rain started to fall, MOTH came up with this: 

Last time I had a digestive biscuit (breast cancer) and dropped crumbs all over the place. Most of these crumbs (cells) got hoovered up (by chemo and surgery) but there was one of those annoying tiny, crumbs you can barely see and that you just don’t know about until it gets inside your top and really starts to scratch, left. Once the hoover (chemo) had stopped, this crumb that had previously travelled undetected to my lymph nodes could go about its business. Here it did not become a chocolate chip cookie (a different type of cancer) but another digestive biscuit – just in a different place.

I blogged before about having cancer primarily because I wanted to reassure people that I was still the same and that it was okay to talk to me and be in contact just as normal and that to shy away from people with cancer because it is hard to know what to say or how to act, merely compounds the difficult time they are going through.

With the dreadful year we have all had and are still having with this blinking pandemic, I was in two minds whether to talk about all this or whether it was just too much for people to take, on top of everything else. To this end, and it being the age we are in, I put out a light twitter poll with the options being:

Yes, shoot the breeze about it, it is useful or

Fingers in ears, I don’t want to hear about it. 

The outcome was everyone bar one, said go for it. But it got me considering for a few days. I couldn’t stop thinking about that one person who emphatically said no; but this is the conclusion I have come to:

I completely understand not wanting to hear anything more about negative subjects – completely and wholly and if they want to put their fingers in their ears I say do, do what you need to. But the thing is this: I don’t have that luxury. I simply cannot decide to put my fingers in my ears and ignore it. ‘Okay then’, some might say, ‘but just because you have to acknowledge it, does it mean you have to write about it?’ ‘Good point’, I may counter and yet, ‘yes.’ For this simple reason; when I write, it is about things in my life that I have done, thought about, discovered, learned and experienced and although technically it is possible to continue to do so without mentioning cancer, it would be rather disingenuous. This is going to be a huge part of my life for many months and to write blithely without mentioning the elephant* in the room, would feel wrong somehow. *I always think elephants get a bad wrap with this phrase.

So then perhaps a compromise, as it is I don’t want to be Cancer Jenny I will just be Jenny who happens to have cancer for a while. So, apart from this piece, my blogs will not be about cancer, but in the usual format of all the things I mentioned above which will just happen to be experienced by me as I go through cancer treatment and therefore, the odd mention here and there is bound to come up.

Instead, this time, I am going to keep a detailed diary of the C word and one that is perhaps truer than the cancer-light chat I put out last time and who knows, maybe at a later date there will be a more full piece of writing to read or ignore as you please.

For those who wish to know, I see the oncologist next week to find out when treatment will start. It will be chemotherapy, surgery and radiotherapy. I am more than bloody furious and sad that it has taken three years to grow my hair back to how I like it and now I will lose it again.

I am okay. Well, I have cancer – but you know what I mean. 

So that is my one and only cancer-dedicated blog this time. As it will be part of my life for a while though, it will appear in my writing on occasion, but not as the main character. If you can’t face reading about it, that is completely fine but please try to remember that by ignoring such things, you are ignoring the person having to go through them because they can’t separate themselves from it.

Everyone take care of yourself and be kind to others. It’s weird out there, but we’ll all get through. 

Note to Self:

I’ve seen a lot of people joining in with the social media prompt to post a picture of themselves from the beginning of the decade and now, as we approach the end of it. But it occurs to me, that a whole world can happen in that time.

If I were to join the posting, the pictures would not be much different, save for a few more grey hairs and a further creasing around the eyes. But all that in between… My life over this decade has been a ridiculous rollercoaster of ups: marrying my darling MOTH, and downs (sadly many) which also include – cancer. There would be a more stark contrast in pictures if I were to post one from two years ago, when I had no hair at all due to chemotherapy.

I am someone who doesn’t subscribe to looking at the past. This has been borne out to me even more after recently trying counselling again. I went because of things that have happened to me over the last five years or so, including going through cancer, which at the time of doing so, you knuckle down so hard to just physically surviving, you don’t get a chance to address the mental and emotional aspects until a year or two after. I have been diagnosed with PTSD and hypervigilance along with anxiety and depression, none of which surprises me in the least. But, it was the constant push to go back and scrutinise the past that made me stop going. Yes, I believe the past would be the genesis of much of my, shall we say, idiosyncrasies, but my personal gut feeling is that ok, that was that, but I’d rather look at now and what can be, rather than what was.

However, I am also coming to the conclusion that there is not an awful lot of point in looking to the future too much, either. I don’t mean this in a depressive – there’s no point to anything – way, but that there is truth in the school of thought which says: the past and the future do not exist, the only moment that does, is the one right now.

A case in point; I have recently made myself very ill by focusing too much on a future. By that I mean, I wanted to grab as many possibilities that came my way, be involved in exciting new projects for bettering my future self, that I took on too much. Between work, study and training courses – I forgot to actually live. I can’t remember the last time I wrote a poem or short story, sat down and painted or even went for a walk. All the things that mentally are integral to my good health, there was no longer time for. I have ended up in utter and complete exhaustion to the point of not being able to stand up for two days because the world was swimming about me.

The past is done – and so doesn’t exist. The future has not yet happened – and so doesn’t exist. That means: now, is important.

I have a body that is not yet strong enough to be as on the full-time-go that there is societal pressure to be and so I need to make changes to make my ‘now’ my focus. I am completely guilty of not taking my own advice, I struggle to accept my limitations, but I really don’t want future me to look back at past me (me right now) and feel sad that I put so much emphasis on the times that no longer or do not yet exist, that I forgot to live at all.

I am a huge exponent of kindness being perhaps one of the most important things in this world and we (I) must remember that as well as being so to others, we must also be kind to ourselves.

 

Jazz in the morning

Just before Christmas, I think I was starting to send MOTH slowly insane with terrible jazz in the morning. This wasn’t in any way a purposeful thing, there was no dark plot to unsettle his mind and to be honest, my own sanity was beginning to become a little twitchy-eyed.

The reason for this be-bop ambush was because I had decided that I could no longer take the onslaught of utterly depressing news that seems to dominate radio, television and social media.

I find there is a very thin line between being aware and knowledgeable about what is happening around the world (which I do believe is important) and being so overwhelmed with it, that it has a negative impact on your mental, and then following that, your physical health.

It’s been a while now since I realised I could no longer stand PMQ’s, Newsnight or Question Time, What should be an opportunity to gain insight into what the people heading up our country really think, is never anything more than a verbal bar brawl. It seems that no-one ‘in charge’ is working together, it’s all finger-pointing, blaming, shouting and lies. These programmes leave me tense, sad and angry and this is not a good way to then toddle off to bed and try and get some good sleep.

I am not a fan of ‘gritty’ TV either. Why on earth would you want to put into your life some of the most horrible things you could imagine, if you don’t need to? There’s enough real and bad stuff out there, I see no need to actively choose to invite more in. Even the blinking Archers (not that I really ever listened, honestly) went all gritty and led me to switch off: I don’t need that aggro whilst cooking tea – seriously, what was wrong with the biggest worry being the sheep getting wet in an unusual amount of rain?

When I was going through cancer treatment last year, there were days I couldn’t do a lot and this left far too much time for the mind to start churning. I decided that I needed to only give attention to positive things. For my physical, emotional and mental health, I made it my job to focus only on thoughts and feelings that would be beneficial to me. Some days, this was such hard work, it was honestly all I was capable of doing. One thing I did though, was to make a list of all the positive words I could think of. I looked on-line, in thesauruses (thesauri? thesauree?), I looked at synonyms and positive phrases and picked out everything that was good. On the bad days, I would read this list over and over, which may sound a little bonkers – but it worked.

And here’s the thing, it would seem I am not alone.

MOTH and I have wonderful evenings with a pair of good friends: there is much food, much talk, much laughter and yes, often, much booze. Two of us (some glasses of wine in, perhaps), quite regularly come back to the idea that we need a Nicer News station, feed or platform of some kind. Somewhere where you get to hear of good things that people do, where encouragement is rife (without ulterior motive) and happy thoughts are shared without the cynicism that so often follows in multi-user spaces.

The more I talk about this, the more people I find that are doing and feeling the same. Only yesterday, the lady on the checkout at our supermarket said that she no longer listens to the news in the morning as it is too depressing. I know many others who have stopped reading newspapers or putting the news on for the same reasons and as far as social media often is concerned – perhaps the less said…

It is a strange thing that us humans are very good at allowing negativity to become the norm and are terrible at making positivity our default. It takes work, I don’t know why, but it does. The way we think very much affects our health in all aspects. So, this is why I have stopped listening to the radio in the morning and started putting on music. I like jazz (I know many don’t) but I didn’t own much and so I was working my way through terrible selections that were available on-line. Perhaps it was the cheesy Christmas jazz compilations that were the final straw, but for Christmas, MOTH gave me some very good jazz CD’s.

Now, each morning after my shower and whilst getting dressed, I will bop around to an upbeat tempo (quite possibly looking completely insane) but you know what, my days are much better for starting with a smile, not a sigh, and I very much recommend this to all.

Focus on the positive…

Happy Christmas – we are beyond Fuzzy Felt

I shall be brief, partly because I have a gammon joint in the oven that needs attending to, partly because I don’t want to end up a blubbering mess but mostly because – who wants to read long ramblings on Christmas eve.

For those who have been reading my blogs over the last twelve months, you will know it has been a, let’s say, interesting (heavily on the italics) year. Without going all melodramatic on you, after being diagnosed with cancer there were a few (not many) but a couple of moments I wondered whether I would even make it to Christmas.

I certainly never envisioned that just getting to the age of 36 would seem like a triumphant win but on my birthday in November, I suddenly felt overwhelmed with a strange relief that I had done so.

Christmas for me this year is perhaps the most poignant yet. MOTH and I always used it as a kind of target, a pinpoint time where the worst would be over and I would even have some hair again. I mentioned in a previous blog that I could perhaps adorn myself with Christmas themed Fuzzy Felt, but I am happy to report things have gone beyond the Velcro fuzz. Instead I have a strange mop of unruly curls; long enough to curl up, but not yet long enough to curl back down. One of my sisters suggested placing one of the Christmas robins in it that normally sits on the tree; who knows, if enough gin flows…

But this blog wasn’t really meant to be about me. Instead, I wanted to say, what feels like a hugely inadequate thank you.

I want to thank the amazing doctors, nurses, surgeons and physios at Ipswich Hospital who were all wonderful without exception throughout my treatment. I want to thank my herbalist who makes me feel that everything and anything is possible. I would like to thank all of you who have contacted me with good wishes from far and wide.

But mostly, I want to thank my band of angels here on earth. Despite it being the most horrendous year, I somehow feel more blessed than I ever have before and it is because of the amazing people who have supported me.

I won’t name them individually, I hope you know who you are. You are my life savers, my laughter makers, my hugs and my cuddles, my listening ears and shoulders to cry on and my drill sergeants to buck me up when I needed it.

My darling family, I feel closer to you than ever and I cherish you all. My amazing friends, you have kept me feeling normal by talking to me about all life, not just cancer. My archangel MOTH, who has been with me for every appointment, treatment, side effect and beyond, with patience and love – you are awesome!

Despite all that has happened this year, I have laughed and loved so much because of you all and thank you will never be enough, even if I said it to the stars and back. I wish you all the happiest Christmas and an amazing year ahead.

Taking Control

 

There is nothing like being given the diagnosis of having cancer to make you feel that you have absolutely no control over things. There you are, pootling along with normal life and suddenly, without warning your world is turned upside down. I have spoken before about the whirlwind of appointments and treatment that steers you along whether you feel up to speed with what’s happening or not and this is a good thing in a way because things need to be done and at this stage, you are most certainly not in much of a position to make decisions.  But, all this can leave you feeling rather helpless and that this big, nasty thing is being done to you. I found that one of the things that made me feel more positive, was to take control where I could.

The first thing I did was to cut my hair short ready for the impending hair loss. It felt like a defiant moment of, ‘well, if it’s going to go, it will go on my terms.’ Okay, so it was horrible when it fell out, but I still believe it would have been worse if I had not taken my own steps beforehand.

I then had a fun/not fun shopping spree for various things I had read about other people amassing to help lessen symptoms and side effects. This accumulation included such items as: hand sanitizer gel, mints, travel bands, lip balm, vinyl gloves, ginger biscuits, skin oil, Milton and a baby brush – which I am using now as my hair grows back. I bought hats and scarves, cotton rich clothing and many other things: most of which did indeed prove useful, a few of which perhaps not so – but the main thing was, I felt like I was preparing and by doing so was tackling things head on.

Knowing that my body was about to take a severe beating from all the drugs, I went to see an herbalist for some gentle natural help to support my poor organs through the process. This made me feel I was doing something kind for my body and whether other people believe in it or not, I truly think it helped me immensely. Yes, I had all sorts of horrible things happen because of the chemo, but I didn’t get any infections or other illnesses on top of it all and my recovery has been good.

On the subject of drugs: I made myself a pretty bag to keep all my medications in; perhaps an odd thing to do, but it meant I could hide all the nasty stuff away inside something pretty – which felt nicer. Speaking of bags; MOTH and I have Cancer Bag, something people have either been shocked or laughed at hearing us say, but it was a bag put aside for all the cancer related paperwork (and my word, you end up with a lot). I wanted to do this so ‘cancer’ did not encroach, hanging around in visual reminder throughout the house. It was all put away ready to grab and go for each appointment.

The last thing I did before treatment started, was to dedicate a space to be my recovery room for the days I couldn’t be up and about much. I very specifically did not want to just stay in my bed and I certainly did not want to call it a ‘sickroom.’ I made sure it was comfortable and clean with all the things I might want or need and as such, it became a place of recuperation and recovery.

As treatment went on; from chemo to surgery, new things came up for which I felt the need to take charge of. Because of having my nerves blasted with poison, I have peripheral neuropathy leaving me with pains in my feet, knees and legs which makes walking difficult and painful at times; add to this loss of balance some days, shuffling about can be rather difficult. BUT, there was no way I was going to start just lying on the sofa so – I bought walking sticks. Yes, I am 35 and have walking sticks and I don’t care. (I thought I had ordered sleek black ones but when they arrived they were dazzling with a silver sparkling pattern – not exactly my cup of tea: they are now referred to as my ‘bling bling go-faster sticks.) They have been a means for me to get out when otherwise I couldn’t – a tool that gave me ability to still go for a wander or mooch around the shops and so, odd as it feels, they are great. In a similar vein, I have old lady shoes – comfortable and with Velcro straps because there were times I couldn’t manipulate fastenings because of the pain in my fingers. Velcro shoes and walking sticks – hot to trot!

After my surgery, I had two drains stitched into me. These were very long tubes with bottles on the end which drew out lymphatic fluid and blood from around my wound areas. What a pain they were! It was completely ridiculous and annoying to have to carry around two large bottles with long flopping tubes 24 hours a day for eight days. I was sent home from the hospital with each bottle in a bag that hung precariously from each shoulder and fell off at the slightest movement. After a few days, I started carrying them in a small hessian bag – a slight improvement but still meant I always had one hand I couldn’t use. So, I made myself panniers which I wore round my waist and left me ‘hands free.’

All these things I did because I needed to feel I had some control over the situation. It was a way of coping and feeling less of ‘a victim – whereby stuff happens to them,’ than a person who was proactively dealing with a situation. But here’s the biggy and the thing I have been learning and expanding upon as time goes on – the best thing to take control of is the mind.

From the start, I knew I didn’t want to be passive to the cancer. I was angry, which helped and my aim was (as my best friend and I have constantly said) to kick cancer’s arse. Of course, I have had days where things have been too overwhelming to not give in to a big cry and a feeling of ‘this just feels too much.’ I always made sure though, that I didn’t let these times last for long. I couldn’t afford to be down, I needed all my energy to go in to getting better. This is hard work. It is full-time work. Being ‘up’ and positive can, at times, be difficult but I truly believe, worth it. I don’t think I’ve said ‘why me’ at any point; I know I’ve said ‘oh, for £*@%’s sake’ and ‘%^$* and perhaps at times ^&!*^^£@&$^@^^&$@^$@^*$^@&^$*&@^$^***@^& but I couldn’t give in to feeling ‘done to’ rather than ‘dealing with.’

I am learning that we all say the right words: ‘we must slow down,’ ‘life is for living,’ ‘don’t hold on to grudges’ etcetera, but saying them and really feeling and doing them are different things. I have been blessed with the impetus for a new outlook on dealing with life. Old habits are hard to kick, but bit by bit, with meditation, affirmation and a whole lot of stubbornness, I am learning to take control of my life through a positive mind and it is oddly liberating. This is my new beginning.

 

My homemade hip panniers to carry the surgical drains

Feeling hot, HOT, HOTTER

Warning, this blog contains sweat!

Current status: sweating my eyebrows off – literally. Seeing as they are now 95% make-up rather than hair and that the weather has turned rather warm, it is not, unfortunately, an unusual occurrence to find that they have slipped or been smudged somewhere across my face.

Summer, it seems, has arrived (well, intermittently) and whilst most are probably enjoying downsizing clothes to shorts, t-shirts and the such, I am covering up.

It is a strange and contradictory time having chemotherapy during the summer months. I am experiencing hot flushes on a scale like you wouldn’t believe caused by two factors: firstly, the chemo drugs themselves can induce this reaction, secondly, I have been having a hormonal implant injected to help protect my ovaries through the process and this causes menopause-like symptoms. Between these two things and the hotter weather I have sweated more than I thought was humanly possible. (I never said my blogs would be pleasant, did I?) For the first week after having the FEC chemo drug, I literally soak through clothing 24-hours a day and it is not unusual to find me sitting head-on to a fan with a bright red face. (MOTH and I have started calling these times my Ribena berry moments, for that is what I look like.) But despite all this excess heat I am also doing some things that may then seem a little bizarre.

As mentioned before, I am generally wearing more clothing now than I was months ago and that is because I must be super careful of the sun. Many of the chemotherapy drugs are radio-sensitizers which means that they make the effects of the sun’s rays more powerful than they would be normally. Chemo drugs stay in the body for up to two months after treatment and, if going on to have radiotherapy afterwards (as I may be when chemo has finished and I’ve had my surgery), you will still be super sensitive due to radiation recall. This is where the radiotherapy treatment leaves not only the affected area being treated more sensitive but also the skin on other parts of the body too. So, for me it is head-to-toe covering: hats, collars turned up, long sleeves, full-length trousers, factor 50 greased all over (and my word, does that stuff not rub in. With my pale bald head and the white sun cream I am looking rather albino these days) and staying in the shade. I said to a friend it might be easier if I just put a sheet over my head and cut out two holes for eyes but I feel a ghostly apparition meandering around the garden may cause some disturbance to the neighbours.

I have not yet had the nerve to go out in public with my head completely uncovered and yet hats, scarves and wigs are becoming uncomfortably hot.

Another thing you must be very careful about is infection. Having an obliterated immune system from the chemo you soon get a heightened awareness and wariness of everything you touch. I love to garden. It is my therapy, the saviour of my sanity and I was most put out when the oncologist said I shouldn’t really be doing it. So, I’ve ignored them – I truly believe that something which helps you significantly to stay positive must be good for you. But, I am being careful and so, when I do head out into the garden I am not only taking it gently and doing small bits for short times, but I make sure I am completely covered, including snood over mouth if venturing to anything dusty and I wear rubber gloves under my gardening gloves. Once again – sweat levels are on high and as for what I must look like…!

It is G&T time of the year, or Pimms if you’re that way inclined, but, of course, not for me whilst pumped to the gills with chemo drugs – hrumph! Instead I am trying to drink as many herbal teas as possible along-side copious amounts of water. For the relief of nausea; peppermint, ginger, green, fennel and camomile tea are all recommended but I must say it is not particularly with enthusiasm that I sip a cup of the hot stuff when sweltering and dreaming of gin.

I have also been soaking my hands and feet in warm water. Mad you say? In this weather? Well, yes, it does feel so and yet there is a good reason why. Firstly, my poor feet are suffering – they are sore and peeling like mad and so I am trying to treat them nicely. I was given a wonderful foot moisturiser and both my feet and I are very grateful for it and I slather it on after a soak in coconut oil and rosemary. The reason I am soaking my hands (once again, warm water and coconut oil – very softening) is so I can timidly and gently cut my nails. One of the side-effects that can happen as a result of the TAX drug (which I had three rounds of first) is your nail beds dying. This is extremely painful and has left me at times unable to do anything because even the slightest touch to my fingers is excruciating. I had a very sorry moment for myself where I couldn’t even break off a piece of chocolate as it was too painful to do so – this made me cry – so I ate more chocolate but only once MOTH had broken it up for me. Added to this fun is that the nails start to lift and so perhaps you can understand why it is with extreme caution and care that nail cutting is undertaken and only after softening them.

Every three weeks, when I head into my chemo, I don gloves and hand warmers – imagine that, in this weather. I do this because I have very cold hands and un-co-operative veins; the silly things just will not accept cannulas. Keeping my hands warm allows slightly better access for the needle and I get my arm wrapped in a heat pad whilst there too. The TAX drug is administered by drip and once started went through fine. But the FEC treatment is administered by a series of large syringes. (One of which is bright red, which, if you’ve forgotten about gives you rather a shock when you next go to the bathroom and it comes out the same colour!) The FEC drugs are kept in the fridge and the first time I had them, the coldness of the liquid and the coldness of my hand meant my veins kept trying to constrict and so it became very painful to push the drug in. This meant we had to keep stopping to warm me up before trying again.

So, spare a thought for me when you are in your swimwear, sunbathing and enjoying a nice cold drink for I shall most likely be having a hot tea, in the shade, completely covered and hoping my eyebrows have not mingled too much with the sun-cream and started to head off to another destination.

 

 

*MOTH Man Of The House

 

 

 

Working nine to five then back round to nine, on to five again, then to nine…

Having cancer can easily be a full-time job. Of course, you have it all the time, it’s not like a shift rota where you can get every other Friday off, but it really can be more than just passively having the disease. Or at least that’s how I’ve found it.

What I mean is that there is so much to do, take in, know, understand and deal with; there is scarcely time for anything else.

In the beginning, when you are in the first throes of diagnosis you find yourself caught up in a whirlwind where you are no more in control than a leaf tumbling over a waterfall.

In my case, I woke up one morning in February and felt a pain around my right pectoral muscle and thought that I must have slept oddly; perhaps with one arm above my head fending off one, or both, of the cats who cheekily like to sneak in onto our pillows whilst we are asleep and assume the mantle of a feline deerstalker. Rubbing around the area that hurt I felt something that has irrevocably changed me and my life. A lump. A large, solid lump at that.

Feeling utterly scared and doing what we all know is stupid, I tried to ignore it for the day but by the afternoon it was the only thing in my head and eventually I had to ask MOTH for a second opinion. Yes, he agreed, there was definitely something there.

Unfortunately, it was on a Saturday this happened and so I had to wait until Monday to call the doctor. There were no appointments available but when I explained to them why I was calling they fitted me in that morning. God Bless the NHS and all who work in her! The doctor referred me straight away and the next morning I got a call from the hospital with a date to see the specialist – in two weeks’ time. I’m not really complaining, two weeks is nothing compared to how long some people wait, but for me, at that time, it felt like two years.

I saw the consultant surgeon on a Monday; on the same day, she sent me for ultra sound and a mammogram and did a biopsy. On the Friday, we were back for the results. NOTHING will ever prepare you for being told that you have cancer. I heard the consultant’s words, took all the paperwork, even asked some questions – but I don’t know how – the world had turned to slow-motion fog. Back in the car I swore liberally, fully and for some time, then cried all the way home. Almost as bad as hearing the news – I now had to tell my family.

What followed was a full-on, high-paced assault course of appointments: CT scans, bone scans, mammograms, ultra sound, blood tests, consultant appointments injections and eventually beginning chemotherapy and this intense packed ballet continues as my treatment does.

As well as the physical appointments, there is keeping on top of what medications to take and when and what to then take and do to combat the side effects from those. (Side effects will be a whole different blog, or two or five!) I have a bag and a notebook that I keep my medications in otherwise I dare say I wouldn’t have a clue what was meant to be happening.

Then there is just getting through the treatment. My first three rounds of chemotherapy were with the drug known colloquially as TAX (I shan’t go into technicalities here.) Although there were some pretty horrible side effects I found that I only had two days in each cycle that put me to bed. But, last week I was changed to a different drug FEC (well, it’s three in one really, one of which being a derivative of mustard gas!) and I have found this one much harder to deal with. Sick, sick and sick would describe it only by adding a further; sick. On these days, the full-time job really was just to get through each minute, hour and day.

But there is so much more that can be explored to help you get through what is essentially a deliberate poisoning of your body: herbal help, diet, exercise, meditation. I have been compiling mountains of information on the such and my head buzzes with all there is to know and find out. There are not enough hours in the day!

There must be balance though and when you have cancer – life outside the disease still exists. I try and get bits of work done when I can, I do the shopping and cooking when not having a bad day, I see my darling family and friends when it is possible. I have often said that if it weren’t so horrible to go through, the process, from an outside point of view, would be fascinating. The idea that we have chemotherapy to essentially turn off cells (yes, ‘have you tried turning her off and on again,’ applies to humans as well as IT systems) and then they turn back on without the cancer cells doing so is an amazing, albeit scary, process.

I feel that when my treatment is done and I am on the road to full recovery, I will still be learning about all this and I hope that in some way, I will be able to do something to help other’s going through it.

In the meantime, I would like to ask you all to do something: please regularly check yourself. It’s hard to know what you’re looking for, I know; all I can say is, I, and others I have spoken to who have had cancer, all say, when you find it – you just know. So please, check. If you find something, don’t ignore it. Go and get it looked at. I know it is scary but trust me, life really is too precious to not do this for you and your family. A few seconds check in the shower could save you all of the rest of the years of your life – bit of a no-brainer really, isn’t it?

 

*MOTH Man Of The House

Can’t write the wrongs

I am so bored of cancer right now. This may seem like a strange perspective to take, but honestly, what a waste of time!

I am having a bed day, back with the bone pains from my white blood cell-boosting injections and really I would rather be up and at ‘em than under a duvet.

I’m not very good at doing nothing, it is rare for me to even just sit and watch when the TV is on; often I will be knitting or sewing or something at the same time and so enforced stoppages due to lack of energy, oomph or horrible pain, quite frankly make me annoyed.

It may seem that these times would be an ideal situation in which to get on with some writing – this being what I do, and what a lovely thought and in more lucid moments such as this I will try to; but I am going to tell you about chemo brain.

Chemo brain – sounds like an excuse, something someone has made up to gloss over a moment of silliness but it isn’t.

In fact, out of everything that has been going on, I have found it to be one of the more distressing side effects of the chemotherapy.

Part of what happens is just blankly losing words or the ends of sentences. I can be talking: yabber, yabber, normal flow of espousing and then [        ] nope, there’s nothing at the end of the line. A cliff edge has appeared and there are no words available just a big gaping chasm of nothing. Very annoying.

For me though, I have found difficulties in reading and writing worse. As someone who has lived their entire life reading avidly and writing to the point where I own more notebooks than is probably reasonable (I am a self-confessed stationery lover – nothing pleases me quite so much as a lovely new notebook and pen or pencil), it has been quite distressing to find I have days where I just can’t do it. I can be reading and it occurs to me that something isn’t right. I’ll read it again. Nope, still not correct – but why or how? I can’t make it out. Letters, numbers, symbols, they are there but can I unjumble them to make sense? No.

The same happens with writing. There I am either scribbling with pen or tapping away on my keyboard, thinking I am putting down what is in my head but what comes out can be completely different. Again, I look at it – something is wrong, but as to what and how to put it right, I can’t decipher.

This is indeed a big reason I find myself bored and grumpy with cancer: when I am physically a bit too depleted to do much, how unreasonable that I can’t sit quietly and read and write either. Hrumph!

Chemo brain manifests in other ways too, especially in forgetfulness and the inability to concentrate. I currently live my life by lists, lists, and lists, a few more lists, notebooks, calendars and journals. This is not just an excuse for another notebook (although I have nearly finished a couple, perhaps it is time for a new one…) The first problem is remembering to put something on the list and then to look at it. When I bring home my mountainous bag of medicines after each chemo treatment I write down exactly what I must take on what day, when and how many otherwise who knows what would happen. I am very lucky in that MOTH has taken on delivery and logistics of my cancer and has a far better idea of what’s going on than I do.

There are many other ways in which the brain gets affected by chemotherapy. My eyesight is shocking now and I struggle to read things even with my glasses on some days. My spatial awareness (never the best anyway) is dreadful and I have to admit I have only driven once since starting chemo and I felt so hyper aware of not really being confident of anything around me that I’m not sure how safe I was to do so. There is unbalance and wobbliness and the clumsies too – I am forever dropping and knocking things, bashing myself onto any available surface and I think MOTH has been somewhat wary at times when I’ve been cooking meals and wielding a knife.

There are many other ways in which chemotherapy disrupts and rattles the brain but I think you perhaps get the idea.

The flip side to all this is: when you have enforced time where you have to do nothing it can open up new thoughts and processes. When you can’t do much, you pay attention more to what there is. I have had a billion new ideas of things I want to do and try (ok, I can’t do them right now, but they will be there when I can). You have to take life slower and end up paying closer attention to things and I have found that by doing so, you can start to see the things that really, really are important. Yes, I haven’t been able to clean the bathroom, do the ironing or get around to exercising (although I have managed to avoid that one for a lot longer than the cancer!) but I have noticed and felt things in more detail than ever and I am learning patience (not my forte as MOTH with tell you) and the ability to not stress so, for example when running late or not getting something quite right. Perhaps I will become a serene and laid back kind of person at the end of it all, or maybe I will be full on rushing to do all the things I want to do now but can’t. I don’t know, but I do know that life doesn’t stop just because you are having a bed day.

When you can’t find the word you need, let it go, one will come eventually – it might even be a better one. When you can’t physically get up and garden, visualise and meditate on your ideal outside space and use that time to calm and focus yourself inside.

When things are not as you want, do what you can at the time.

 

(You may have guessed that I have had to employ the use of both spell-check and MOTH to make my blogs readable in any discernible sense. Before doing so on this blog here are some words I wrote and could not make sense of or why they weren’t right: notesbooks (could I see the extra ‘s’? No.) unbalabce (I couldn’t figure out at all for a long time if any of these letters were right) kocking (kept wondering why I was talking about cooking until eventually realised it was meant to be knocking.)

 

*MOTH Man Of The House

 

 

Hair, Cinnamon Buns and Fuzzy Felt

Let us talk hair – or rather, the lack of it. Not all cancer treatment leads to hair loss – but mine has. I knew it was going to, I even knew roughly when to expect it to start happening: I was prepared and had a plan. However, despite all this I was surprised at how badly I still took it.

The oncology nurse asked me the question whether I wanted to try the cold cap. The cold cap is – well – pretty much as it says on the tin. Think of it like a freezing (literally) hat strapped on to the head the idea of which is to constrict blood vessels to the hair and perhaps reduce the amount of chemotherapy drugs getting into the hair follicles which may reduce hair loss.

After having been in contact with someone who did use this and by reading about it and reading forum threads from others who had used it, I had already decided no, to the cold cap. From what I could discern it would mean freezing myself and my head in a manner which was quite painful for anything up to two hours each time I had chemotherapy for a process that only might reduce the amount of hair loss a bit and just as much may not work at all – a lot of operative words there! This seemed rather pointless to me: extra pain for a possible reduction only, which would still leave me with patchy, thinned hair. No thanks.

So, my plan was this: get a short haircut – which I did and I ended up with a fabulous short do that I never would have tried otherwise and which I rather liked – for the two weeks I had it! Then, as soon as I noticed hair going it would be out with the clippers and down to a grade two.

On the twelfth day after my first chemo I noticed a change in my hair. Firstly, the wonderful styling of my new haircut (done by MOTH* with his hair wax and whom I called Fabio whilst he styled me) did not stay in place. I saw my mum that day and I said my hair seemed weird; she felt it and said that it was sad hair – and she was right. It felt very silky soft but in a limp sort of way.

Day 13: (I did mention I was keeping explicit notes on what happened when– maybe there’ll be a graph to go with the spreadsheet some time). I had been expecting the hair fallout around the two-week mark and on day 13 the time had come. There I was, eating toast and jam, having a coffee and I ran my hand through my hair and oh dear, what a lot came out. In the shower, it was as if it were hair not water cascading down. I cried. Wrapping myself in my dressing gown I went downstairs and cried at MOTH. It was clipper day. We did the shopping, bought iced cinnamon buns for emotional support and then buzzzzzzzzz.

Over the next few days it continued to come out thick and fast until I was more pink and fuzzy than anything else. Horrible. Cold. Alien. This was all I could think and feel when I looked at myself. My head was sore too and I found that the small fuzz I had would be pulled on hats or pillow cases and hurt even more and so on advice from someone who had already been through it all, I decided to wet shave my head – which took me three attempts as I was trying to do it myself and that is harder than you would think.

I had been trying to hide my bald head from MOTH – this was not how I wanted him to see me, but it is impossible. As much as anything, you need time occasionally to not have anything on your head: 24-hour coverings can get hot and uncomfortable, so in the end I unveiled the bald to him and he helped my shave off the few last tufts I couldn’t reach.

I have never had great hair and rarely did much with it, I knew this was going to happen and it is just a thing that is part of the process of getting rid of my cancer. Compared to having a tumour and the horrible side-effects of the treatment, this really is just cosmetic and shouldn’t matter – but somehow it does. It is an obvious and real outward sign that screams – I have cancer.

I still hate it but I am trying to just go: it is what it is (I find I am saying this a lot now). MOTH and I have joked that the fuzz would be just perfect for sticking Fuzzy Felt to: we both have fond memories of the farmyard set with the little tractor and sheep. I am acquiring an extensive collection of various head coverings: scarves, hats, snoods etc. I also have a wig. My sister and I went wig shopping and were hoping to have some fun trying on some of the more outlandish ones. However, the lady in the shop was very ‘right and proper’ and it was apparent that this kind of behaviour would not go down well. Very sensibly we picked out a few and I took home Veronica (they all had female names) who I began to call Ronnie, then Ron and now all I can think of is Ron Burgundy!

My eyebrows and eyelashes are starting to thin and I am having to learn the art of make-up: something I never really bothered with much before. I am hoping they won’t go completely otherwise I may have to take-up residence at sci-fi conventions for a while just so I don’t look too out of place. (By the way, if you go on the internet and search ‘bad eyebrows’ you can waste quite some time laughing at some pretty disastrous eyebrow happenings.)

All going well, by Christmas I should have a small covering of new hair and a body free of cancer – what a wonderful Christmas present that will be. Until then I will make the most of my many choices: bald, hat, snood, scarf or Ron Burgundy.

*MOTH Man Of The House