Janice Issitt                    Life and Style

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15 Apr 2019

My Chemo Recovery Space

Creating a haven for recovery has been an absolute life saver during these weeks of chemotherapy so I've found an ok day to quickly photograph and talk about how I've tailor made this space. 

My third chemo treatment is out of the way and I'm just about to have the fourth. This last one seemed to take longer to bounce back from, if you could call it that, I wouldn't say that I feel back to normal, far from it, but to not feel absolutely terrible is a good day on chemo. I'm gritting my teeth for this fourth one as so far, the side effects seem to get more intense each time and more severe in some respects, plus there's some new ones like the twitching eyes, the sore throat that won't go away, it's the gift that keeps on giving. I'm struggling a lot of the time to keep sight of the end and just praying that it's a good result after an operation, four more chemo sessions, radiotherapy and then another operation. I can only say that there are plenty of people far far worse off than myself, but even so, you can't help but to cave in on some days with the sheer exhaustion of the treatment. 

So here's the things that are getting me through .....

I've had many bedding sets from Soak and Sleep before, some gifted any many purchased over the years, so when they offered to send me a fresh new set of French Linen I was absolutely delighted. Spending a lot of time in bed one needs to keep changing for fresh sets, if nothing else, it makes you feel so much better to slide into cool clean sheets. I've been a fan of pure linen bedding for some time now, it really was a winner when I was going through the menopause and again now when one's temperature is all over the place. We shouldn't skimp on beds and bedding, we spend so much of our lives here and when we are ill or have sleep problems, its more important than ever. Pure Linen has to be tried, there's something about the weight of it and the soft texture which is warm and cool all at the same time. It looks good crumpled but surprisingly needs no ironing when washed (I've found it needs less work than cotton) it dries with a smooth appearance, and if there are some creases it adds to the look.  I chose the light grey colour but they have a good selection of lovely muted shades including a really nice pink and green which are quite rare to find in linen bedding, plus their prices are the lowest I've seen and they often have a discount running.

The fact that I'm not in hospital should be celebrated and anything that reinforces that and adds to a boudoir feel in my recovery room, with my antique French bed and other items of indulgence, all contribute to a better state of mind. This is a time to really indulge in whatever makes you happy in your surroundings and you are going to be staring at these four walls for many months to come. 

So other than gorgeous duvet cover, fitted sheet and pillow cases of pure french linen, what else am I doing. Well I've got a few other great tips to help you through the long days. Soak and Sleep also do these lovely satin sleep masks, so because sleep will probably be all over the place, there may be times when shutting out the light for a few hours during the day will help you doze off while listening to an audio book. Also a good gift if you know someone on chemo. I always bring nature into my home and more now into my bedroom, snippings from the garden and flowers from friends make the room again adds to the less sterile atmosphere, my lovely orchid was a gift from a friend which she sent through Marks and Spencer online delivery.

Lovely magazines, books and hobbies will also be great stimulants for the foggy brain, magazines with great styling and making ideas, beautifully curated books of images that will give you ideas to carry through to your own home and maybe inspire your art. My eyes are a bit dodgy so photos rather than words are ideal. For me knitting patterns and naturally, knitting projects are hugely important. I've managed two jumpers since I started chemo and I can't wait to start on the third.

If you are interested in the knitting patterns that I'm currently crushing on, it's Rowan yarn (felted tweed) with the patterns designed by Arne and Carlos. I've taken inspiration from two of their patterns so far, put my own changes to them, and although one has mistakes regarding the sizing, I can live with that, it was more about the making than anything.  I've also ordered the Rowan yarn knitting book influenced by the Bloomsbury set and again using my favourite yarn, the felted tweed, it's soft and comes in stunning colours, great for fairisle and two colour work. 

My oil paintings are all still works in progress, there's an unfinished one hanging in these photos, and I'm not sure I will do any more to it (because I kinda like where I stopped) but maybe just need to add a little detail into the flowers. As I like to paint still life, interiors mostly, I find that interior books and magazines can be really influencing in their colour palettes and textures, I also paint from my own photos so you may find the original photo of that painting on instagram.  Recently I found both Jean D'Arc Living magazine and The Country Brocante book both visual feasts for my mind, there are links to these on my instagram feed. The magazine has a tutorial for mini bird cages for Easter which are super cute and the Book by Lucy Haywood features many of my friends homes, many similar in age and style to my own. I found this old house quite a challenge to style because of it's manly beams and I practically had to ditch all my old furniture for a different palette (I shall be doing a big yard sale sometime and will let you know). The homes in this book belong to fellow instagram friends and they have hugely influenced what I've done here.

Finally I want to mention a few discoveries about self care. My skin is taking a right bashing. I have red dry patches on my face which normal moisturisers weren't really helping. I've also lost a fair bit of body hair now and my skin has gone incredibly soft and sensitive. My lovely friend Ali (she of all things Eco Sustainability - Incredibusy is her handle) is a real expert in finding environmentally friendly but also 'good for you' stuff. So she kindling put me in touch with Earth Conscious who make natural deodorant and also a great Baby Balm. They should change the name to Miracle Balm, or Brilliant Balm ... because this isn't just for Babies, it's a great all rounder (really brings tattoos out nicely) and I've been using it on my red dry flaky skin, which it has practically eradicated. It was soothing to apply and has worked on several areas of my body, including my face. They have a good selection of natural deodorants too and I'm working my way through these which are really kind and gentle to the skin but also the stick deodorant has a cardboard container so there's no nasty plastics on their products either. 

As you may have noticed I've brought a few things up to my room for days when it's hard to move. I've put a kettle next to my bed so I can make herbal teas at any time of the day or night. Flowers and plants make me feel spoilt, some from the garden and some sent by friends. There's also a tv which has been my constant companion and distraction, I think I may have watched everything on Netflix, but I do love a good binge watch on tv series and films, and yes, Games of Thrones is back which should be something to look forward to every week and I will also probably work my way through the whole back catalogue again.  

Heres some links if you want to get hold of any of the things I've mentioned;

Soak and Sleep Pure French Linen bedding https://www.soakandsleep.com/luxury-linen-bed-linen.html

Earth Conscious www.earthconscious.co.uk for uk based natural deodorant and baby balm

Jean D'Arc Living Magazine from Betty and Violet www.bettyandviolet.com

Country Brocant Style Book from www.thecountrybrocante.co.uk

New Nordic Knitting patterns by Arne and Carlos at https://knitrowan.com/en/publications/rowan-brochures/new-nordic

While some of these products are gifted, please be assured that I only recommend things that I genuinely rate and approve. Trust me, bloggers get sent some right old crap at times (there's a whole blog post brewing there sometime about the cons we get offered for virtually no reward, I can't imagine who would be desperate enough to sell their soul like that), but I promise I won't be featuring anything here that I wouldn't buy for myself and never review anything that I haven't thoroughly tried.  

10 Mar 2019

Chemotherapy thoughts and tips

My second round of chemotherapy took place a few days ago and so I thought I would share a few thing's for anyone about to undergo this treatment or just for those who wonder if it's as horrendous as they have heard about. Please note I'm talking about the day to day side effects and not the more serious complications that are caused by this type of treatment which effect your blood count etc. 

It's important to point out that the term chemotherapy is a very general one, and one person's treatment plan of combination drugs will vary to another, so as previously pointed out, cancer and chemo is very individual, I mean very.  I haven't yet met one person who has had or is having the same experience as me, due to the type of chemo drugs and the way you react to them. There's the mental side to consider here to, one which glaringly is absent from any consideration with every doctor I've spoken to who just offer you sleeping tablets and anti-depressants. 

Chemo is all about the side-effects and while you will get a list of possible ones, you really may not be fully prepared due to the fact that the hospital won't provide all the 'over the counter' stuff that you probably should stock up on before you start. Judging by the amount of anti-sickness they give you, that's probably the most common problem and while I have to take it on treatment day, I've not really felt sick at all, but boy have I had a lot of other things going on. You will also need to be taking your temperature daily as this is an indication of your blood cells being low and I'm not discussing this serious side here as I'm not a doctor and you will be given clear instructions about how to deal with them.

It's all those niggling everyday things that can also bother you, and when they all happen at once can make you feel pretty terrible as they seem to be magnified. My biggest 'pain' has been caused by acid reflux/heartburn which would just not go away, it was immensely painful and went on for about ten days, with me phoning the hospital and getting Omeprazole (which has always worked  before) to discover that it just made it worse on some days or didn't work at all.  Eventually I found out that I could also take Gaviscon (something that didn't work for me before) but sipped slowly this did relieve the symptoms quicker, so my point being, that what may have been your remedy before chemo may not be the thing after chemo. I'm trying a different drug from the doctor now for the acid which seems easier to digest but I wish I'd had the Gaviscon drink in the cupboard from the start and that's the point of this blog post - to stock up on some straight forward medicines from the chemist. 

Typically one gets either constipation or Diarrhoea and my body has decided to go for the latter. Actually my whole internal system is just not working normally but the 'getting caught short' with no warning does mean you are pretty much tied to a loo on some days. It's not a good idea to block it up with pills but the pains before and during diarrhoea episodes can be excruciating so I was recommended to try an IBS tablet (Buscopan) to help with the cramping pains and this is quite a good idea to have in stock because unless you've had IBS before you are unlikely to keep it in the cupboard. Always check with your hospital before taking but trust me, if you are in agony on a Sunday night you don't want to wait to take something. I can't suggest what you should take for constipation but you may want to ask your doctor what they recommend should that be a side effect that you get.  

Mouth problems are common, ulcers and swollen gums so I got some Iglu Mouth Ulcer type stuff in and this was welcome on the few days I had a flare up. Make sure you change to very soft tooth brushes and get a mild mouthwash. 

There really seems little point in recommending food and drink as I've not yet agreed with one person on what I'm either craving or finding helpful. Your taste goes and is is replaced with a weird metallic taste. The most annoying thing for me is that a lovely cup of tea is now not so lovely. It's completely trial and error and what I've craved one minute changed a few hours later, so all I can say about that is try and have someone around to go to the shops for you a lot. The comfort of eating what you want and knowing that it's something that will make you feel better (on many levels) is priceless. I was vegetarian up until this and my main craving has been for bacon sandwiches! So go figure that one. Jumping back to the 'constipation or diarrhoea' will also probably influence what you feel is best to eat. Feeling empty will make you crave some stodge and feeling full and bloated will make you want some light fruit like melon perhaps. I'm not a doctor but eating what you fancy seems to be the most important thing here because if you don't then it's just adding to the torture you are already feeling. If 'trying to be healthy' means forcing food you don't like the taste of then it's not going to be good for your mental state as, let's face it, you need to take pleasure wherever you find it during these months. 

The best way to deal with the side effects is drink at least 2 litres of water a day, this is terrible news for me, I friggin hate water, always have done, so it's a mega chore for me to lug down that much fluid but flavouring it didn't work because of the weird metallic taste thing, so I've got to grin and bear it because it really makes a difference and it's vitally important to flush out the toxins or you may get liver and kidney problems. 

I've had a lot of skin problems too, sore red spots and big puss ones. For a few days there I looked like someone with acne and measles, I think these are side effects to the Immunotherapy drugs. If you get skin outbreaks then you probably need a few different products. Because your skin also becomes very dry you want to avoid strong cleansers but if you have spots then something that you could just dab on them to kill the bacteria is good. I've also just bought some Bare Minerals foundation which is a very thin serum that has colour to it and this just made my face look less patchy when I went out. A small range of organic skin kind moisturisers and cleansers perhaps if you don't already have them might be worth looking into. On days when when my face decides to burn up (on the steroid days) I use a Neals Yard soothing serum, but as you won't know beforehand what your skin will do then just be prepared in the best way you can.

I'm going to wait to talk more about the beauty side further down the line because this will change over the coming months. Looking the best you can is vital when you don't feel great. I'm trying the cold cap to see if I can keep my hair but it's too early to say how that will work for me. So far, I've not lost any hair but I'm aware that this could change. However, I do want to document the cold cap system in some detail but it will need to be further down the line. I know there are groups for ladies to do pamper sessions organised by the local cancer charities but this kind of thing is not for me so I want to talk more about doing things for yourself in a less public way. I find the worst thing for me is the public display of having treatment in big rooms full of other people and the loss of dignity I associate with that. For me cancer isn't a club that I've joined.

I want to address the mental side from a different perspective as well, and explore why the diagnosis of cancer makes you feel de-humanised. For me, joining in with all the others who have cancer to 'do stuff' is humiliating, it's like admitting that our dignity is now gone, we are now a statistic so we should just fit into this group and jolly along with others who we have nothing in common with apart from cancer. I had to share a treatment room with another lady who talked to her friend about death and all the people who had died, in the end, even my husband had to ask them to change the subject. Ah, headphones, there's another top tip! These groups are great for some people but aren't for everyone, and if you don't feel comfortable with that then there's no guilt in admitting it.   Trying to do things for yourself is by far the most empowering and so grabbing back some things that you have control over will make you feel less of a victim. It's another reason I was grateful for my 'Little Lifts' box provided by a local charity, because it was a way to sit at home and treat yourself.

The photos in this post are all taken in my bedroom, I'm making my recuperation room as pretty and cheerful as I can, with flowers by the bedside, some new art and my cats. I've got a tv in my room too as Netflix binge watching on extreme tired days is great company when you can't lift your head off the pillow to do a crossword or read. More about that too in the months to come. Beautiful bedding and some visually soothing elements will cocoon you on the down days. 

If you can then stock up your medicine cabinet with all the likely treatments you might need, hopefully you won't need them all, but to have them when you need them is going to make the side effects a lot more dealable. After your first treatment you will just be waiting to see and this is pretty stressful in itself. Getting control over them will help a lot in your general well being so being prepared and not having to wait until someone goes to the chemist for you can make quite a difference. You will need to learn how to manage your   chemo side effects and determine which are the serious ones and which are the ones you can do something about. 

If like me you struggle with sharing personal space in a vulnerable situation, (like being attached to a machine for many hours), then having a bag of treats with you can help you manage your space. My own blanket, comfy clothes, headphones and books are all recommended, I love cryptic crosswords so it's a good time to sit and indulge in that kind of thing and have some control over your surroundings and keep the anxiety down.

Be kind to yourselves x


16 Feb 2019

Hello Cancer meet my old friend Anxiety

Well, I never thought that my return to blogging would be like this, and up until a few days ago I also never thought I would blog again, ever, or take a photograph again ever. It's taken a few months for my breast cancer diagnosis to sink in and for me to get perspective. From finding the first lump to starting Chemotherapy yesterday has taken what seems like an eternity. I don't know if the speed that my local hospital works at is normal or not and I expect that while the national health service is undoubtedly slower than private, it clunks along at the pace it can cope with, which unfortunately is bursting at the seams with the amount of people being diagnosed with cancer. At the breast unit in my local hospital the professor told me he had told four other women that day that they had breast cancer, scans and results took weeks of agonising waiting where I thought I'd go out of my mind, and the chemotherapy unit is so fully booked that I had to wait a month to get into the system there. 

I don't think the few months of waiting will make any difference in the end, this cancer has been growing for quite some time and ironically I got my 3 year call up papers yesterday to have a mammogram, I've never missed one of these so during the three year gap my tumour has grown to nearly 4cm and spread to my lymph nodes.
Maybe we need these yearly eh? So my treatment plan is to shrink the tumour over four sessions or so of chemo, then remove the reduced lump and so on, with the hope to preserve the breast, that's the plan.

The few months of waiting to get to start treatment have in a way been useful. We cancelled our previously arranged wedding (which would have been on my first day of chemo as it turns out - Valentines Day) and got a registrar to rush us a ceremony with a party after for half a dozen friends and so I could hang out for a few days with old mates before I started to get side effects of chemo.

During this time, planning that small wedding, reading up about what to expect with chemo and preparing my 'chemo kit' has distracted us a fair bit and in between we go on long drives exploring the coast, walking on the beach and hanging out with new friends and neighbours.  My 'chemo kit' if you are interested consists of the following ; Blanket, big shawl wrap, stretchy track suit bottoms, cashmere socks, short sleeve t-shirts, cashmere jumpers and hats. Toiletries - lots of extra gentle non chemical shampoos, conditioners and de-tanglers so my hair doesn't get any damage while I'm using the Paxman scalp cooling cold caps to retain my hair during chemo.  Other essentials, mouth care, top priority, it gets dry and sore so very soft biodegradable toothbrushes, special dry mouth mouthwash, lozenges to suck which increase saliva. I need to get more skin care moisturisers without perfume next as my face is burning after yesterdays round of chemo and cold cap.  I'm putting on dark nail varnish because I read that might help to keep your nails from falling off (who knew that could happen, not me). 

Food wise we are back on the nutribullet for morning smoothies packed full of nutrition and eating as healthy as can be but your panic tends to drive you to either not have an appetite or to comfort  eat, and we seem to have gone for the second option of indulging in a few treats here and there. The increased anxiety since diagnosis day has rendered me exhausted and the 'head stuff' has made me feel very ill, while the cancer tumour is hardly noticeable. Weirdly I haven't felt good in a long while, having back pain almost every day and headaches, I and the doctors put this down to the menopause but something is nagging at me now, that my body was trying to tell me something, it was trying to tell me that my cells were being naughty and doing things they weren't supposed to, so diagnosis had also put into place something I was subconsciously feeling for the last 18 months. 

So, let's look at the mental process since diagnosis. Firstly, there is only one cancer case you need to know about, and that's your own. My advice, is don't google (great advice from a blogger). Read the UK macmillan site and don't take too much notice of what happens elsewhere like the USA as it's not going to be much help other than make you question the treatment you are being given or offered. There are about nine types of breast cancer so even your mate or her friend are likely to have something different to you so their treatment plan will be different and their side effects will be different and the way they deal with it will be different. Some women are ok about loosing their hair, others aren't and so don't feel pressured into taking on a look that isn't you. Personally I don't want to look any different at all and hope that if weight is gained then I've got an excuse but won't be totally happy about it but if my body wants to rest then I'm not forcing myself to jog around the garden and I'll just have to buy bigger stretchy pants. 

I've started to realise that from confirmation of having cancer it's the same as when someone close to you dies. Hell, this person is very close to you, it's you ! Yes you heard the C word, you are now officially a statistic of over 55,000 in the uk. There's also a statistic for how many women die and a percentage of your survival rate. My percentage at 'stage three' is reasonably high considering it's spread to the lymph nodes (these are the little gates that catch the cancer cells and try to stop them going into the rest of your body) but that nagging devil on my shoulder is reminding me of the 20% who don't make it through. Even looking up the statistic for this post has given me a sick feeling in my stomach, I don't think it's necessarily helpful to know this stuff, like it's not really helpful to compare your treatment to someone else's, it can nag away at your confidence in facing it.

It's a shame we have to 'lump' all cancer sufferers into the same category because the very word just freaks you the fuck out. It's your cells deciding to multiply in an abnormal way. So you got your nine different types of breast cancer, but then you've got the positioning of it in your body, whether it's spread, and what your lifestyle and family history has done to contribute. My point here being, again, it's only your own cancer that matters and then you need to look at how to get through the treatment plan you are given and get in the zone for that. Cancel work and commitments if you can. Chemo takes away your immune system to it's best if you can position yourself to not have contact with too many people as you can't fight infections. If you can take a year off and say, this year I just get on with sorting out the chemicals and cells in my body and that's all I'm doing. I'm incredibly fortunate that my income isn't reliant on meeting people or leaving the house or coming into contact with children etc. Get along to your local cancer advice centre and find out what benefits you are entitled to, they won't be offered you need to kick butt and seek it out. You should be receiving free prescriptions - get yourself some good gastro-resistant capsules like Omeprazole, maybe something for your nerves like Diazepam and the hospital will give you anti sickness when you got to get your chemo. 

Here's where I want to go now .... I've given you my coping mechanisms rough guide but there's more I need to say and it's about anxiety, mental health and how to communicate with someone who has been told they have cancer. 

How to tell people, whether to make it known or keep it secret that's all up to you, but if your support network has been built up around social media, like mine has, then you probably are going to announce it on facebook or instagram at some point. The exhaustion of repeating your story becomes a bit too much to do it all one to one and for the first few weeks I could hardly pick up my phone and read and I definitely couldn't speak to anyone. Brain overload, burnt me out to a zombie, my Ian was the same. I couldn't sleep so the days and nights got more tiresome and long with the worry of whether it had spread to the rest of my body or not, how long did I have, and all our plans for the new house and business gone completely out the window. 

I'm sincerely hoping not to offend anyone now but I really feel I need to say a couple of things. Firstly when you've been diagnosed your brain goes into overload, well it did for me and a few people I also know who have been recently dealing with it. We all have our own belief systems, whether it is God, Buddah, witchcraft, homeopathy, acupuncture .... and in times of crises this is where you will turn, but it's not necessarily going to be where someone else will turn. I truly appreciate the prayers, the spells and stuff because I really really want them to work, don't get me wrong, but these are not things I practise myself. Over my 60 years on the planet I have had a huge open mind for alternatives to modern medicine. I've tried A LOT of stuff and spent a fortune along with it. I've had every imaginable treatment going, acupuncture, osteopaths, beauticians, taking vitamins, taking chia seeds, trying turmeric drinks, this diet that diet you name it I've tried it. My personal conclusion ... most of it either didn't work or just made me feel worse. If it works for you then that's brilliant, but none of this works for me and I'm not risking my life or making it miserable by spending every minute of every day loading up on apricot kernel, cold baths, cutting out coffee and sugar, not using a mobile phone. My husband doesn't even want me to be here doing this, on a laptop, so even we can't agree on what I should and shouldn't do. One of the more effective things that I have tried because it fits into my belief system is cannabis oil, legal in this country without the thc (the bit that gets you high) it still works for anxiety to a certain extent and it's made from natural ingredients so probably can't do any harm.

There's just too much information out there and when you are in a life threatening situation the last thing you need is to hear about is something someone has read on the internet about cures for cancer. There's too much stuff to sift through and even if you do hear about that man in America who has this clinic .. are you really going to go there and pay for that or is it just going to make you feel shit because you can't go there and pay for that. 

I guess the point I'm trying to make is that due to the internet and whatever, we are overloaded I mean really overloaded with suggestions about what worked for other people. But these things are important to those people because that is their coping mechanism but you need to find your own coping mechanism and just stick to that and if you are an intelligent open minded person you will pretty much already have that in place. It's hard to decide if hearing about what works for other people is useful or not, it's another scrap of information that you have to absorb and then dismiss because you just don't have room in your brain box for any more.

Now I suppose I need to talk about 'positive' ... You will notice that I haven't used this word at all so far, and that's because I hate this word. To me this word is an order, a demand and instruction to be happy, up, to be totally convinced that you are going to survive and beat the adversity. It's bandied about as a catch all buzz word but when I hear it now, it's just want to scream. 

There's a couple of things going on here, one - I over analyse every word said to me, I take offence where none was intended and I put this down to my mental health. It's taken me ten years to work out how anxiety affects me and I think that theres probably ten blog posts about anxiety if truth be told, but I'm going to try and give the shortened version if I can. 

Firstly we all have anxiety, and certainly when you hear a diagnosis for cancer you will be anxious. It's our bodies 'fight or flight' mechanism from when we were running away from dinosaurs or something. The releasing of chemicals from an anxiety trigger cause real actual physical things to happen. This, like a swans feet paddling away under the water to keep afloat, is all happening inside the body while we are stood there like a numpty being asked a simple question or told a piece of information. 

Here's where the rudeness come out. While the less anxious person can probably just answer the question 'how are you today' the anxious person, like an autistic person is trying to make sense of that quite normal question. I'm using this as an example. It might not be words that trigger you it might be certain places, like hospitals or public transport, pubs, train stations .. it could be anything and mostly certainly will be linked to something bad happening in that place before, that was OUT OF YOUR CONTROL. This last point is key, when stuff is out of your control us anxious types are really kicking into 'fight or flight' mode. 

The first thing they do before giving you the chemo is check your weight your blood pressure and your temperature. Here now for the first time, my husband could actually see what is physically happening to me when I go into a hospitals and start to panic. My blood pressure and temperature were so high it is bordering on the levels of not being able to receive my treatment that day. So we have to make the call, this is anxiety causing this and not something else like an infection etc. 

I can rant on for ages why I can't stand hospitals, its a combination of watching my parents die, of it looking and feeling like a place where everyone goes to die, like being in an old peoples home before your time, it's one flew over the cuckoos nest for me. I don't like the furniture, the bright strip lighting that gives me a migraine, the sticking plasters that make my urticaria flare up, the other people, God bless them, but they can be really annoying! In the middle of a panic attack an old man ran up to my nurse (I was completely invisible to him) waving a plastic bag containing a used incontinence pant asking where he should put it. I nearly ran out of that place (flight) but instead my 'fight' mechanism kicked in and I blurted out 'oh for fucks sake' ... sorry.

I have a feeling that 'difficult patient' might be written on my notes somewhere.

I now pre-empt my every response with 'I have really bad anxiety' and this helps them a lot to understand my abnormal reactions. So here we get on to 'positive'.

I do get what people mean when they say it but do they get what affect it has on the person they are saying it to. I get that bad shit can happen in our bodies while we are dealing with unhappiness in our lives. And during the stress of unhappy times we aren't really paying attention perhaps to looking after ourselves, we are dealing with the negative. And so I suppose if you have the ability to put a positive spin on everything then your happiness and determination will hep you look after yourself better and probably make you a lot easier to be around. 

Being 'positive' is just another coping mechanism. And like the coping mechanisms mentioned previously, it's not for everyone. And here's why it's not for everyone. 

Some people just can't be 'positive' for whatever reason and I'm sure there's a few. I think we all understand now why 'cheer up love it might never happen' being shouted as you walk down the street is annoying (god that used to happen to me a lot). Or telling someone with depression 'what have you got to be depressed about? can't you just cheer up). Ok we know now that these scenarios aren't helpful to the recipient so perhaps you can then start to understand why 'be positive' is also not helpful to the recipient. I'm quite happy for you to be positive for me, if that makes you feel better about yourself but truthfully I'd rather you came and cooked me dinner or helped me with the cleaning. 

In dealing with this minefield of what I have and haven't found helpful to my situation perhaps somewhere out there this might help the reader think about how to communicate with the friend who has cancer. Being diagnosed, like I said before, makes you feel like a number, an unimportant one size fits all cancer patient. What you need is for the people around you to look at you as the individual that you are and see what they can do to support your belief and coping mechanisms. If your friend's identity is about their hair then telling them that they can wear a 'nice scarf' ain't gonna cut it in their world. But looking at scalp cooling during chemo and sussing out where to find great wigs (really good fabulous wigs of course) might be better, so they can have a contingency plan in place. The total stranger that came up to me in my favourite shop overheard my conversation and said 'sorry to butt in but Ive just had breast cancer and the best thing I did was get my eyebrows tattooed' well this lady was in her seventies and her eyebrows look amazing, they weren't tattoos in the normal sense but micro-bladed hairs in colours that suit your hair and complexion. Top piece of advice for the woman who wants to stay looking the best she can, I got the address of who she went to and was there two days later having it done (get it done before your chemo because your skin is too sensitive after and during).

Other stuff ... well distraction is priceless. Let's not forget the persons identity here again. Once of my best distracting conversations has been with my old tattooist who wanted to ask me about interior decorating her flat. Oh, we've chatted online for ages about paints and colours and it was just what I needed. We have  only recently met some new friends around where we live now and they have been amazing, coming round for coffee, inviting me round to hang out on days where I was waiting for results to come through, talking about art and decorating, our previous lives in London, it all helped to pass the torture time in a beautiful way. There really is nothing better than nosing around other peoples beautiful homes.

Try not to be alone, ask for the help you need and try and be kind to your primary carer. Your fuse will be short and combined with the steroids you take around your chemo treatment days, you can be quite volatile, mood swings and anger being predominant. Tell your best friends what is really going on in your head, hopefully by now they will love you anyway if you tell them some really dark shit. Be angry if it helps, it's probably better out than in and try to direct it where it causes the least amount of damage. I think it's important that the people who you feel the most for understand how frightened you are and it's time to drop the very English 'I'm fine' and say how you really are. I'm afraid to say that if they can't embark on this journey with you then they may not be worth having on your friend list, if you get my meaning. You need people who understand how serious this is and so find your support where you can, it might not even be with those who have known you since school it could just be someone you chat to on instagram. I've had some long and really interesting messages from women I've never met in person and some really cold messages from people who've known me since school. So you can't always predict that stuff. 

I hope my points about anxiety have come across. This is trying to address the difference between being normally anxious at diagnosis and having bad anxiety before diagnosis. If your friend or loved one has this before then it's going to be tricky trying to find your way through. Try to understand that anxiety sufferers know they are being irrational but they really just can't control it at times. I'm the most rational person you will meet, and so I drive myself mad enough with the irrational thoughts and reactions, it's like an outer body experience half the time when I'm out of the house. 

Please try to understand how individual this cancer is for everyone, in the way it is growing inside you, the way it effects your mental health and the way you cope, it's totally different for everyone. It's not necessarily going to be helpful talking to others with it unless, like me and my friend Stephen, we have a secret laugh about some of the things we've had suggested to us. Humour being our coping mechanism. "Oh, Steve, remind me again of the woman who gets in touch with an alien or was it a spirit, oh and you pay them some money and they will sort it all out for you". I'm telling you, if you saw the list we have compiled of all the cancer fighting things we should be doing, you would pee your pants laughing. And when overviewed as a whole the list is pretty funny because you couldn't do all those things in one day, but actually as each and every one of them is being suggested to you  theres a guilt that if you don't do it are you hindering your recovery or management of the cancer. So I hope this blog post has gone some way to explain some stuff. We know that the suggestions are well meant and take them as a compliment but the autistic anxious side of us has to deal with information overload and that's a whole other stress that you simply don't need. 

It's a double edged sword. Keep it to yourself and you won't have to deal with so many 'words of encouragement' or put it out there but be prepared to spend a lot of time filtering what is and isn't relevant to you. I think that for me I need to have it out there for the few amazing comments I've had from complete strangers who've put me back into my place in the grand scheme of things. My bestie Claire said something far more eloquent that this but roughy it was "you had your story, your book written out about your life and your future and something has come along and just ripped out a huge chapter, it's torn up the present and the future and left you with a hole, and you are stood there saying 'this isn't my story'".

Yeah you're right Claire, this wasn't meant to be my story, but it is now and back to square one, I'm having to write out the new story the one with the different twist to what I'd imagined. If I'm going to find my way through this then while it didn't seem a possibility a month ago, I think that maybe if writing this helps just one person then I've achieved something but I'm also doing it to help myself as well, to hang onto who I am and what I was before ...

The future has become a blank page again. This blog well it's going to have to be my monthly updates about health, coping with treatment and still trying to carry on with our plans for the house, (although they have changed a lot and I will talk about that separately) for Ians recording studio and our travel plans. We hope to fill our days with drives around Norfolk and Suffolk and perhaps I can show you the pretty bits in photos and tell you the shitty bits in words. Let's see. I'm curious to know just how terrible or not chemo turns out to be and whether I want to share that or not, we shall see. 

Lastly, big big thanks for all the flowers, gifts, cards and messages, every single thought word and deed has not gone un-noticed. We have found love where we didn't expect it and that's an incredible thing xxx


6 Oct 2018

Hygge with Lekto Wood Fuels

Hello October, it seems unbelievable that it's that time of year again particularly as here in the East of England, there are still some splendid days. But we know it won't last much longer and as the rain and colder days are only a matter of weeks away, then it's time to get Hygge ready especially around the fireplace.

As you may know, I've moved to East Anglia, not far from the coast to a Tudor house surrounded by farms, the juxtaposition between countryside and seaside is just perfect. We are getting used to the traffic which is basically a couple of enormous tractors going down the lane every day, sometimes we count the number of cars we see on the drive to the nearest town and watch the seasons change with the crops growing, ripening, harvesting and then preparing the soil again for another year (gosh that is really pongy when they are muck spreading but hey, it's where our food comes from). 

Coco enjoys the heat, she is one of our four rescue cats and is blind

I've been dying to try out the enormous inglenook fireplace, so was super happy when Lekto Wood Fuels asked if I wanted to try out their  heat logs. I already use their hardwood heat logs, for many sensible and practical reasons. Firstly there's no dirty insect ridden logs having to be dragged in from outside and then cut into the right shapes for the fire. Secondly, they catch fire really quickly so it's less time in the grubby grate on your hands and knees, trying to light the thing and keep it going. Best of all they produce very little mess and ashes so cleaning the aftermath is easier and less frequent.  

The heat output from the hardwood logs is much higher than with chopped wood and there are no chemical additives to the logs which are made using a high density compacted wood for longer burning and more efficient heat production. They are easier to store too.

Lekto are now selling mini packs, a box of either night briquettes as you can see here, or of the heat logs which are unpacked behind. The 20kg mini pack is great for smaller homes that don't have the storage space, so if you click here you will see how to order. The night time briquettes burn for 8 hours so will release a slow even heat all through the night, they are good for wood burners and stoves too, delivered to your door in this handy box.

white opalescent lights above the fireplace are from Rose & Grey

If you have a fire or stove and would like to try them I'm giving away one box. To enter the competition then follow Lektowoodfuels on Instagram and tag your hygge or fireplace photos with the tag #lektowoodfuels   If you don't have Instagram then comment to me on my facebook page or twitter or even here. The competition is open to  UK only.

I have a new instagram account for the Air bnb at the house, it's called Old Suffolk Cottage and if you watch this space there will be discounted rooms available during the winter for followers of my social media.

If anyone is interested in holding events at the house then please do consider us. We plan to have a Brocante next spring with some local vintage sellers and makers congregating in our garden and would love to hold some courses here where you can stay overnight if you wish. Probably sewing, knitting, creative writing and photography from me and in the music studio there is drum tuition, song writing and recording too.

Warm hugs Janice. 


18 Sep 2018

Embroidery and Inspiration

Last week I stumbled upon an embroidery workshop not far from me, it was just one of those serendipitous moments to find the last place was still open on the day course to embroider a beautiful small piece with stitchery guru Nicki Franklin. Not only that but Nicki was holding the event at the stunningly inspirational home of Rosehip In The Country antique dealers and their daughter Kate of Oyster Bridge & Co.

One would assume that the venue wasn't terribly important, being as how Nicki puts together such lovely kits for her workshops, but actually this house for me was just one on my list of 'must have' places to see, due to the fact that it has many similar challenging features as my own newly acquired Old Suffolk Cottage. The house, also listed, has been restored more to my taste than my own home if I'm to be brutally honest, but has so many similar features I knew it would help me to focus on where to go with my own restorations. 

Highly envious was I, of these stone floors, oh yes. The walls have the same open stud work in the walls as I have in my cottage. It was comforting to see the familiarity as this is quite a common feature of the old Suffolk cottages and longhouses.

Jen of Rosehip and daughter Kate of Oyster will both be at the Country Brocante being held at Daylesford Farm next weekend. It looks to be full of the creme de la creme dealers, particuarly of French finds. They also have pop up shops in this house and so I was able to do a bit of shopping after my day of embroidery with Nicki.

dried flowers from Rosehip, glass dome from Rose and Grey 
So why embroidery, well it was my first ever learnt craft, something taught to me as a child, I took it as a subject at school and even passed exams in it. I thought it would be a nice relaxing workshop as it's a subject engrained in my muscle memory, my only hold back now being my eyesight, but my results were still very nice and the joy was in the doing. 

this is the beautiful folder that Oyster Bridge Kate had made for our embroidery kits 
If this sounds like something you would be interested in then have a look at Nicki's website www.nickifranklin.com She has a studio at the location I've often used for photos, Castle Ashby, and coming up both Jen from Rosehip In The Country and Kate from Oyster Bridge and Co., will be joining her for a dried flower and gift wrapping workshop at the end of November. 


7 Sep 2018

Autumn New Beginnings

I thought it was time I made a return to my blog with an update from the last few months. As you may, or may not know, I moved to Suffolk  and we are so busy there's barely been a minute to take a photo. Half our worldly goods are still in storage while we build a big and beautiful studio in the large grounds of the new house. When I say, new house, I mean new to us that is. The house is over 500 years old and we have become the latest guardians of it's magnificent beams, some of which are so low that most people, myself not included, bash their heads on, including the other half.  

The Old Suffolk Cottage has carvings on it's beams from 1610 but it is thought to date back to hundreds of years before that. No walls or floors are straight or level, and while the house itself needs no major renovations, we have lots of plans for decorations and tweaks to the colour schemes and fixtures.  

The weather was glorious from the day we moved in so we have set to work digging some borders for flowers and clearing away overgrown areas of the grounds, especially around the small lake. The ground was very hard with the lack of rain so it was hard going, but I've managed to establish some flowers and add a splash of colour to the front of the house. I was a bit late ordering my Dahlias but I've managed a few blooms, and judging by other Dahlia fans, it's not been idea conditions for them in the UK this year.  

It's taken a few weeks but I've now got a decent cooker, a range style one but not an AGA. Mostly I've been busy on internal design and my biggest job so far was to remove the old varnish from the living room floor, with a hand sander because the boards are so warped. I've decided to leave the wood bare as every treatment I tried on it turned it an orange colour which I then had to try and remove again. 

The wood panelling around the giant inglenook has become a dark slate colour and I've highlighted the fire surround in a pale stone colour. We have trawled around many reclamation yards, found lovely old windows from a convent for the studio, and scaffold boards for shelving. 

Every weekend there has been some great event or other happening, mostly of the antique fair variety, the best being the yearly street fair in Halesworth but closely followed by the Brocante in Diss and the barn sale by new friend Liz. If you follow me on instagram then just ask me for a link to her - @lkmakes insta page for more info about her barn sales. 

Then, this week, one fine morning there was the most glorious mist, we can see for miles and miles from our cottage, just fields and fields of wild flowers and crops, with an ancient church somewhere over there in the distance. The mist brought with it an incredible dew, and just like that, there were thousands of sparkling cobwebs. I rush for my macro lens, and still in my dressing gown, spent hours in the garden desperate not to miss any of the wonder. 

One of my absolute favourite things about this part of the world, is the 'honesty box' stands of flowers and vegetables at the end of people's driveways. There's a lot of small holdings as well as farms and some experienced growers to meet and buy from. No chemicals and no carbon footprint, what could be better, and with my large kitchen and new stove, I'm getting set for some good food. There is an original bread oven here too, but more about that when I've worked out how to use it.  

At the Halesworth street antique fair, I found this cute side table and a set of Welsh studio pottery that will be getting it's own shelf in the kitchen. We also came across a shop in Harleston that was closing after being there for over a hundred years, some of it's stockroom clearance was old books from 1850 and Victorian ice skates  which we salvaged from a skip (with their permission), what an exciting find that was. 

The pumpkin bundt cakes seen above, are super delicious, they are a Nigella recipe https://www.nigella.com/recipes/pumpkin-bundt-cake  which I've not tried before and it was a triumph. Just to warn you the cake rises a lot in the oven, so don't overfill your bundt pan. I can also confirm that my new oven is great. 

This leads me onto some other news - food related - that from the October issue, I will be contributing a feature on historical food ideas in Reclaim Magazine, so hunt down a copy or order it online to see that in it's full glory. 

I kicked off a little used hashtag on instagram too which I'd love you to join me with, use #autumncloseup for anything you find that shows this seasonal shift. 

One last thing, I've been nominated for an IBA again this year, but because my blog has been dormant for a few months I'm not asking for votes, I'm in the wrong category I feel so I will leave it for another year. 

I'm not entirely sure I can commit to weekly blogging any more, and I don't want to put myself under any pressure as I don't really like competition with other bloggers when I feel that the web is big enough for all of us. Blogging is something for those who don't like the corporate world, so in the interests of sanity, I'm giving myself time to do more real life things for a while. 

Next week I'm doing a one day course in embroidery so hopefully I will be sharing some information about that in my next post. Until then, look after yourselves, and see you soon.  

17 Jun 2018

making over the sofa

And finally, I can tell you, after months of uncertainty, that I will be moving to Suffolk at the end of this month. The house we fell in love with and will be hosting an Air bed and breakfast location, is a Grade 2 listed house that is over 500 years old. 

Before we go I've had a chance to change some of my existing furniture for the new look we will be nurturing to suit the ancient beams and crooked floors. This incredible old sofa, bought at auction for very little money is having it's second transformation with me, changing the dark wood and the floral covers to a pink and grey scheme.

Naturally, I wouldn't dream of painting furniture in anything but Annie Sloan Chalk Paint, but for this piece I wanted some subtle touches to age the paintwork.  While not obviously visible, I've added some details that will notice more when you are sitting on it.

One such technique is the crackle glaze which I've used in two different ways on here. You can see some short videos on my instagram highlights of the application process. On the back rail I painted the glaze over the Antoinette pink paint and applied dark wax into the cracks.  On the main part of the sofa, I applied white wax into the cracks to lighten the overall look of the Paris Grey.

To highlight the pink colour on the carved details I've done a couple of things here. I put dark wax into the grooves and used the gilding cream in copper onto the highlights. It doesn't look too precise in these close up photos, but the overall effect from a few feet away is that the effects are aged and worn. 

I am far from being an expert in upholstery, I do it to suit myself but it is not professional in any way. I believe you are supposed to cover your nails with a braid but I don't really like this look, and I'm quite a fan of the deconstructed look anyway, so I kept it basic. The fabric was super cheap from e-bay, I don't feel that my skills warrant an expensive fabric, also the cats will bound to take their turns on the seat, and one, who shall be nameless, does like to claw at sofa arms. I found some old and aged pink velvet to cover the bolster cushions, which I have just hand sewn for now. 

I've left it in a position that it can be changed quite easily, but is totally fine to use as a seat.

Because my next home is basically a wooden framed house, with original floorboards and lots of exposed beams, I need to neutralise the wood on the furniture or it will look a bit mad in that setting.  So painting with chalk paint is the perfect solution to making all your furniture complement the ancient wooden structure while matching with the other pieces. I've bought a few French pieces so I'm making my existing furniture tie in with that and keeping to a pale palette of grey with pink touches. 

Details and links will be posted here and on instagram for when the Air bnb is up and ready for visitors, so I do hope you can come and holiday with me. I may be talking about photography, social media and interior decorating in future retreats, perhaps also collaborating with some other experts and giving guided photo walks around the area.

Bye bye to my big Florence coloured wall and Buckinghamshire and hello Suffolk long house and seaside visits. Until then, find me on instagram. 

For more information on Annie Sloan products, including the crackle glaze, brushes, the copper gilding paste, the paints and waxes go to 

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