Janice Issitt                    Life and Style

travel, interiors, photography, home, crafts, personal style

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7 Sep 2019

Reclaimed Summerhouse - part two

I've desperately been trying to get some lovely photos of the summerhouse but I went and got Shingles! Chemotherapy affects your immune system so it's fairly common to get infections and such, so a cold swiftly morphed into shingles and it's set back my last chemo session.  I feel bad for posting so infrequently, but I know my readers are bearing with me and I hope that the things I'm sharing can resonate with anyone else in this situation. Trying to do a bit of what you would normally do helps you to hang onto who you are, so I've cobbled together a few more photos of what's happening in my 'she shed'.

Since the last post I've been bringing things over from the house, and changing a few things. I tracked down some pottery boards to use as shelves, so the first shelf we put up just didn't work and has been swapped for this lovely old pottery board. These boards came out of a Stoke On Trent pottery, and they are beautifully worn with a patina of old clay.

There's still a few gaps to fill on the pallet wall but we are so happy with it and because these pallets had weathered in our garden for a while, they give a lovely rustic feel. It was important to have some organic elements in here, to bring the outside in, so every time I come here I snip a few dahlias for the jug.

To continue with the organic rustic look we used tree branches as curtain poles. These came in a big bundle from a coppiced woodland locally and were fairly straight, having been cut for use in the garden, I knew they would make good curtain poles. I dug out some old french crochet laced curtains which make a good fly screen when the doors are open.

Our feature wall is now finished, the wallpaper is from Cabbages and Roses and I've hung this old frame over it to add interest and texture. I've been layering up the bed with old throws, and just a big old pile of miss-matched pillows and cushions. I thought a wallpaper wall would bring a touch of faded glamour to the room and because we can't use wallpaper in the house (as we have too many beams). I like the contrast between the antique/glamorous and the rustic/natural.  

Some of our Moroccan finds have made their way over as I like to mix up different styles.  The rugs and the wedding blanket throw came from our trips to Essaouira from the little square and shops just round the corner from the Villa Maroc (which is always an inspiration for me since I first discovered it over twenty years ago). 

The coffee table came out of a skip, we repaired and painted it and it's been in various locations, including the garden. The Lloyd loom chairs have been with me since my very first flat and I've just got a soft spot for them, having changed the cushion pad covers many times, they make great occasional/conservatory chairs, not too bulky they are just handy to have, sometimes in the office sometimes in the spare room, they've moved around.

As we move into Autumn I've brought a small heater in here to keep it cozy and I expect that this space will continue to morph in it's use and look, so I will continue to snap away whenever I can muster up the energy to lift my heavy camera.  

My last chemo session is next week and then I begin a month of radiotherapy which I will be documenting on this blog and on instagram. All I know about is that it makes you very tired, so I know where I will be taking lots of afternoon naps ....


24 Aug 2019

Chemo hair and other such tips

A huge thanks for your continued votes in the Amara IBA awards - (https://www.interiorblogawards.com/best-use-of-photography-blog-2019/janice-issitt-life-style/) best use of photography.  It's blog posts like this where I have to blend photos that don't illustrate the words, and visa versa ... I am therefore very pleased that during my current situation of fighting cancer, I can still be nominated in the 'Interior Blog Awards' with the photos that are giving me pleasure to take. 

I'm struggling to move around, my arms aren't working, the chemo side effects are doing their thing and setting up a room shot is really hard, so taking some fine art style flower portraits can at least help me keep my hand in and give me some personal joy when I'm unable to do room styling. 

I'm sorry that I've felt the need to share on instagram some bad experiences I've been having at the hospital. I have to be honest, and if my truth helps anyone to feel less alone, more prepared and better informed then it's job done. I've never wanted to be put in the situation where I have to talk about our precious NHS in a bad light, but you need to be prepared for your treatment to maybe not go smoothly, maybe not be well organised, maybe add to your stress and discomfort and for mistakes to be made.  

When you are spending every moment of every day for over a year (or more)dealing with the pain and discomfort of the cure, the constant 'opinions' of non professional others who think that eating this and not eating that will make a difference (therefore guilt tripping you into thinking that this is your fault for eating chocolate)  ... you feel under attack all the time. I really don't understand why complete strangers feel the need to say some bullshit about what you should and shouldn't be doing with your body, particularly eating, when it's a daily struggle to find something that doesn't make you feel queezy, that tastes vaguely like it should, that staves off the steroid hunger pains and so on. 

So apart from this being a place to vent my opinions, I also want to share my experience of the cold cap and how I've been trying to hang on to some hair, and here again, I really don't want to illustrate that with photos of my head, so if you aren't interested in the cancer then perhaps just look at the pictures as a separate entity ...

Let's talk about the hair loss progression during chemotherapy. For the first (heavy duty) four rounds I really didn't loose very much hair at all, but towards the fourth round I did see some shedding but overall it didn't look too different. I limit the amount of times I wash it to maybe once a week as more hair does seem to come out when it's wet and trying to get the tangles out. I switched to very very mild shampoos (Burt's Bees do a nice one) and very intensive conditioners to stop it tangling (I tried Coco and Eve) and most recently I found a hairbrush (made by Manta) that was designed by a guy whose wife was having chemo. The hairbrush is available on Amazon and I think it's very good, I wish I'd had it from the start.

I stopped using permanent dye on my hair and switched to a wash-in one from Superdrug just to tone down the new growth and after a few months I trimmed a few inches off the ends so it doesn't tangle so much. 

Weirdly the big hair loss seemed to come immediately after my operation, I have no idea why then. Now my hair is about half it's thickness and very fine like baby hair, it's very fly-away and I'm trying to find something to deal with that, nothing discovered thus far but I can keep this updated if I find something great. Annoying that I used to have a spray which now seems to be discontinued. 

Whether my new soft fine thin hair is because I stopped using permanent dye, stopped using a hair dryer, or because its the result of the chemo on the hair follicle I'm not sure, maybe several contributing factors.  I don't have any completely bald patches so the Paxman Cold Cap has at least left me with a fine even coverage that is no worse that just baby hair. Having this thinner type of hair is better than no hair at all and where the choice is this or be bald, I'm going to be thankful for small mercies. 

As I only now have one more chemo to go I've bought some shampoos and conditioners that boost hair growth and see if these do anything at all. My head doesn't feel like my own, it's a very strange sensation. I wonder if these thickening shampoos will work, I can but try, although I hope they don't have the opposite effect and make it fall out more. I try not to rub it at all and I've also bought a silk cap to wear in bed at night. A few people I know said the silk cap stops your pillow rubbing your head, so while I look like some dreadful old victorian granny, I'm prepared to try pretty much anything, even eating walnuts while wearing a night cap apparently. Attractive not !

Thank you for your patience and understanding during these hard times x


18 Aug 2019

Reclaimed Summerhouse - part one

If you follow me on instagram then you will be more than aware that my husband has been building me a Summerhouse. Several reasons really, not that I need them, but because I've been on chemotherapy I have to keep out of the sun, and months spent just laying around, one does need a change of scene during the day.

Working on a budget and trying to use free and old stuff as much as possible I had a cunning plan ....

Husband had already started an area of decking overlooking the rather large pond and while it was a beautiful scene to sit and take in, I simply couldn't sit outside for too long. Standing there one day I had the brainwave that what I needed was a sheltered area, somewhere to relax and potter, take photos, sewing projects, that kind of thing. 

And so the idea for 'Church End' - the 'She Shed' came to being. 

in the process of hanging pictures and putting up some shelves

car boot finds and things dug out of the attic are being put to use here

I haven't finished decorating yet, and I've thrown together the styling just so I could get some photos to illustrate this post. I'm struggling to take photos right now, moving around and using my arms is quite an issue, so bear with me on the rough and ready shots.

We started searching for the cheapest 'summerhouse' we could find. I'm saying it like that because it is a really basic shed in actuality. I thought a rough frame to start with would help get a structure in place which we could add to in layers, to strengthen, reinforce and make look timeworn.

I won't be saying where it came from for a few reasons, the quality is terrible, husbands foot went through the thin floor on day one, there were parts missing, and other parts spare and it didn't arrive on the promised day.  When we tried to phone the UK company we could never speak to anyone in the UK, but rather a call centre in Indonesia who were never able to answer our questions. I am still absolutely baffled as to why a UK company needs their phones answering in Indonesia regarding the delivery of the item that is only a few hours away. Anyway, I knew if you buy cheap you must unfortunately expect this sort of nonsense. 

we ran out of wallpaper, more is on order !!!

Ok, so cheap crappy shed thing arrives, but it's proportions are exactly what I want, there are windows in the right places and the flimsy construction does make it easy to alter and chop about, so job done on getting a framework to start off with. It comes with instructions and Ian managed somehow to build most of it on his own with a bit of help getting the roofing felt nailed down. I'm not suggesting this is a one man job however, I would say if you are a normal human being then it's probably a two person job at least. 

First thing to add to it was another floor, I wanted a wooden floor to paint white so we called up a few local wood merchants and got a good price on some 'tongue & groove' flooring to fix on top of the existing crappy one.  

As you can see, inside and outside the end wall has been layered up with a lot of reclaimed materials. The chippy bits of wood boards came from a barn renovation our friend is doing. We basically dropped round to see him every few days and took away all his discarded materials. The arched window, still its original colour came from a reclamation yard called Womacks, just outside Norwich. We think it came from a posh Wendy House originally.

Once the floor was down we started to line the walls with insulation material, its a stiff foam sheet backed with a silver foil and the back wall definitely needed this as you could see daylight through all the panels. After covering in insulation sheets, which are easy to cut to size, we boarded over them with hardboard.

we've made curtain poles out of tree branches and I plan to make curtains soon

We added extra windows on two sides, the arched one and the small one in the back. This small one was fixed in place before the insulation and hardboard went up. I found it on ebay from a local guy who was knocking down an old outbuilding. Luckily my husband had learned how to fix windows into walls when building our cartlodge but this really is the first thing he has ever built on his own. I just had to make sure he had good tools, circular saws, etc.  

For some time now we've been scrounging pallets where we find them and from Facebook marketplace where you can often find free ones. I really should have bought a special tool for pulling these apart as it was back-breaking for my one man pallet destroying husband. 

As the hardboard walls wouldn't sustain being drilled into or take any weight for shelves and such he had a go at a pallet wall.  We might give it a wash of chalk paint sometime, we haven't decided yet. 

I keep seeing bits that need painting. There's still more finishing off to do. 
More next week about the extra touches, the decorating and the dressing of the summerhouse. I spotted a fabulous mid-century sofa bed in a charity shop and we might just have to go back and have a look at it, so watch this space. I haven't completely decided on how the wallpaper end wall will look, for now I have an old iron bed but this look is still developing as I dig out old things from the attic. 

The flowers came from a 'pick your own' morning that Southwold Flower Company had this week. I thought they would be a quick fix in terms of cheering up these photos as bare walls are a bit boring in photographs aren't they? Keep your eyes peeled for more news about Southwold Flower Company as there are very interesting plans ahead for them which, I hope, to contribute to in some small way. Just need to get myself fitter when all the treatments are over so I can start to collaborate again on beautiful projects. 


18 Jul 2019

Here I go Again - FEC chemo starts this week

Hi there y'all, well if you haven't guessed it I'm back on steroids and therefore I'm blogging in the middle of the night. Finally yesterday after a series of problems, I started this next round of chemo.  It's called FEC which just makes me think of the Father Ted character who shouted Feck all the time, well, imagine him, and that's me. FEC are the initials of the three drugs and these three are completely different to the last three (one of which was herceptin). I will continue to receive herceptin but it can't be given at the same time as the FEC trio so that will be another joyful trawl to the hospital every three weeks involving needles no doubt. 

FEC is a follow-up cocktail I believe, a less invasive dose supposedly, well we shall see,  I will keep you posted here on how that differs from my first four rounds. 

It still involves the thing that by far more makes me worse than anything and that's the steroids. I feel like I never recover from the interrupted sleep even when not taking it and I'm sure it adds to my daily fatigue. I've had to resort to some opioids and see if I can get a few more hours on those, including cbd oil.

Having a few weeks to get over the infection in my breast and a break from chemo, (which I had to insist on as they hospital says it was against protocol)  I can see that my creative needs do return, I just needed to access that bit of my brain that guides my style and have a serious word with it. Worried that I would never have the energy again for full photo shoots with my really heavy equipment, I decided to pair it down to a tripod and a black background so that I could photograph the flowers currently going hell for leather in my garden. A lovely way to record my achievements just outside the front door. Planting a country cottage flower border at the front has made the whole place smile, it has changed it such a lot. On the areas where there is gravel I have taken tips from a good friend and bought some wicked galvanized planters.

My friend Rachel visited and helped me with a few small girly jobs that needed a womans touch, sorting out my wardrobes, making a cover for a chair, and cutting my hair which was long overdue but I didn't trust anyone else so I've got rid of the tangled ends in a hope this will make brushing less of a big deal. My hair is thinning but not so bad that I couldn't do a style to disguise it. Keeping some length helps with that. I met another lady doing the cold cap yesterday who also has long hair and like me, she trimmed the ends so you don't have to pull when brushing but keeping the length for styling and disguising any bald patches. I don't seem to have any bald patches, just a bit thinner that's all. 

My summerhouse is coming along a treat and when we've finished I will do a full blog about creating the 'she' shed with all my special needs in mind. It's incorporating lots of reclaimed materials which will act as cladding to thicken the walls and old windows found at junk yards and on ebay. 

On Chemo you need to keep out of the sun so a shady space where you can lie down is a great way to get out of the bedroom, I can have a few hours appreciating the garden and the pond that is teeming with birds. I've even got a rescue wild rabbit which I'm fattening up for release away from the cat that brought him to me.

The 'She Shed' will enable myself and local companies to use it as a backdrop for photos, and if you can bring your products to me and help with the styling then we could be on the road to getting me back to work. I have to see what the light is like but I have the feeling that it could work as a lovely backdrop for mood photos.

The AMARA IBA awards have been in touch (although I'm not sure I qualify anymore) but if you think that 'lifestyle' includes the downside of dealing with cancer, then perhaps they can find a space for me in the 'Best use of photography" section as I try to incorporate and illustrate inside and outside my home, during this period of transition. Creating the best recovery space when you are ill is probably one of the most important bits of decorating you will every do. You will spend lots of time staring at those walls and life will feel very harsh, so the warmth and comfort of a beautiful space is vital and shouldn't be underestimated. 

I will put up a link when I have one for voting.

In the meantime, my ideas for the summerhouse/ she shed, continue to keep keep me perky, and the husband is building a palace fit for a queen out there. Painting starts this week so once that's done inside we can try out the furniture.  I am toying with a feature wall of wallpaper at one end, currently on the look out for the right thing I've ended up pretty much 'glued' to a company called Woodchip & Magnolia but also harking back to Cabbages and Roses and Sanderson, I just can't decide. It needs to look very faded like it's been there for years.

Hope to see you next week with more flower portraits and more news about the summerhouse. Oh and to let you know how the FECKING FEC is going with my usual honest tips on how I'm coping with it. But whatever it is you are all doing with your prayers and your wishes and your thought and kind words, it's working to fill the void of love that I just couldn't find to give myself and a very dark time.  

All the best Janice


7 Jun 2019

Breast Cancer - a message of hope

I'm writing this as a message to anyone who has had a recent diagnosis of breast cancer or for friends and family of those affected.  I want people to know that it is possible to rid your body of cancer and there's no special herbal, holistic or whatever, remedy or any 'special' positive thinking required, just submit yourself to the health care professionals and let them do their job.

I say this because I feel that the recommendations and instructions by well meaning bystanders, aren't in my opinion always helpful. I've read a few other people say this. The idea that you can 'fight' it or 'battle' with it actually gives you the guilt that unless you are prepared to become this guru of 'positivity', you won't be helping yourself and you will let the cancer 'win'.  

This is such utter rubbish, I'm sorry, but please trust me fellow cancer person, you really musn't be made to feel like you should take control and dig for the energy to do some miracle working. All you need to do is turn up at your appointments and do what your specialist team tells you. Try not to over complicate with over thinking. I didn't even hate my cancer, it was just a bit of my body that went wrong. You just need to move your mind-set and try to relax into the process and learn to go with the new flow.

I can honestly say that from day one I've not been positive, the only thing I've been is honest. I've not put a brave face on it, I've just dragged myself through every day, often grumpy, often rude and mostly really angry. I can't really be angry at getting cancer anymore, it's taken a while but as time ticks on you realise that this happens to so so many people and no-one is exempt from the lottery I'm afraid. 

I've been mostly angry for no reason other than that I feel like shit from the drugs or the operation and I see the jobs round the house mounting up, the frustration that the garden needs weeding, there's decorating to be done and there's washing in the basket from last summer. My husband does as much as he can and kind friends have often fed us as he is no great cook.  

I think it's ok to feel angry, however it manifests just go with it.  The most important thing is cope with it in your own way and if you don't feel positive then join the club, because why should you? 

For a lot of people getting a breast cancer diagnosis they won't really have been feeling ill or in pain before, it comes as a shock because you don't often get any warning signs, it's just wham suddenly it's there, or it's been there a while and you hadn't noticed. I found a large lump when I got a twinge lying down in bed one day, I was between the three year scans which I've always gone to.  The lump was 4cm and the cancer cells had spread to the lymph nodes already, so this was fairly advanced right?  

Now here's the thing. From what I can tell speaking to other people, the doctors often give you the worst case scenario, they won't want to give you any 'positive' spin like 'oh but the type you have is the sort that doesn't recur' or 'the position of your tumour makes surgery very easy' etc. These are the things you will have to try and glean for yourself if you can, but my advice is try not to scare yourself shitless. Denial I think can be a great way to control the panic so actually, the less you have to panic about the better.

The best advice I can give is just submit yourself to the process. In fact - stop fighting (whatever that is), I'm not really certain anyone can actually tell you what 'fighting it' involves because there is bugger all you can do except go to the appointments and take the medicines. Everyone has a different treatment plan and this can change depending on how you respond to the drugs. So here's a rough idea of mine.

After all the relevant scans, biopsy, echo, bone density, MRI etc. your team should be armed with all the information they need to prescribe the drugs and the order the treatment is given. Some people have an operation early on, but mine plan was to shrink the lump so that there would be less breast to remove.

To shrink the lump I went for a full day of drugs through intravenous drip every three weeks. These were one chemotherapy drug and two other drugs, one of which is herceptin and the other another type of biological immunotherapy drug. During the administering of these I would sit in a comfy chair at the hospital and plugged into the Scalp Cooling machine to prevent my hair falling out (Which as you know totally worked one hundred per cent). 

Usually for the first couple of days after chemo you don't feel too bad then the side effects start to kick in and during the months these tend to get worse. Deal with these in whatever way you can. Eat what you fancy, stay in bed if you want to, just don't push yourself to do anything you don't feel like doing. Any small pleasures just take them and so if healthy eating goes out the window, then so be it. Just don't push yourself. 

The drugs are the cure but the cure will make you feel pretty terrible. So ironically, having not even felt ill before the treatment you begin the process of just letting the drugs do their thing which unfortunately will take it's toll on your entire body. Here's the thing though, they work so just stick with them. After one round of chemo I started to realise I couldn't feel my lump anymore and after three rounds of chemo neither could the professionals, in fact they couldn't even see it on ultrasound because it had shrunk so much. At this point they realised that much less of my breast could be removed so after having prepared myself for half of my breast being cut away, I ended up with only  a small portion of it taken.  As I type I'm still in pain from the operation because they also have to remove your lymph nodes (mine are the ones in my armpit), so it's pretty sore but despite the swelling etc. I can see that my breast won't look too different to before. So much time worrying about something that didn't happen! Originally the plan would have meant that my breast would be so different to the other one that I might want to have the other healthy breast reduced in size to match (which I probably would have done). 

This week I went for the appointment to get the results from the operation. The surgeon says that it is extremely unusual to find no trace of cancer in the surrounding tissue but in my case there was nothing, not a single cancer cell to be found in the tissue taken from my breast or from my lymph node. 

I'm waiting now for my oncologist appointment to find out what treatment I need next. This isn't the end, it doesn't just stop here because the cancer is gone.  So while I don't completely understand why, I do know there is possibly more chemotherapy, radiotherapy and ongoing medication. 

Now it's just time passing and the process being finished over the coming months, then the recovery again after that. But for now I don't have to think about having cancer. I just need to deal with the physical side effects as they come. 

I never once thought I would definitely be clear of the cancer, certainly not this quickly, because I didn't want to let myself down  and I think this is where positive thinking doesn't work. If you continually tell yourself it's going to be great and it isn't then you have that horrible disappointment every time it doesn't go to your plan. While I appreciate that positive thinking means different things to different people, it's never made any sense to me and I just want to say that if it doesn't make sense to you either, then you shouldn't feel bad about that too. God there's enough to feel bad about already! Learn to re-adjust, perhaps give in to the fact that things will be different after. Life doesn't have to be less enjoyable it might just be different, and hey, maybe you needed a change anyway. 

Try to believe that for most people the drugs do work so just hang on to that. 

This blog post is here to tell you, it might not be as bad as it first appears. Until you take the medicines you won't know how you react to them, or how well they will work but I do believe the trained professionals know their stuff because I'm proof that what they prescribed did work. 

If you have received this diagnosis try to find a thought process somewhere between panic and delusion. Sounds hilarious I know. I think it's fairly natural to go to the worst case scenario and maybe you do need to explore all the eventualities of what could happen. But even the doctors don't really know how it will go for you so just try and go along with all they can offer, don't get too angry with their lack of information or encouragement because knowing less and keeping an open mind is probably more helpful for your own sanity anyway.

Distract yourself as much as is humanly possible, this is the best tonic. It will take your mind away from the scary thoughts and the harsh realities. So to do this don't let your mind have too much time on it's hands, fill it up with anything and everything. If I even think about meditation I panic at what my mind will do so for me it was read, watch tv, knit, learn a new language, do crosswords. Think of this as one big long waiting room queue and on the days when you feel a bit better go for a drive and explore, go to the beach or a museum, just fill the time while the drugs work on your body. 

The time it takes will be different for everyone so try to take a break from your busy life and learn to become a patient patient. Again, my best advice is submit to the process, stop fighting for the life you had and the things your would normally do, just go with the flow for now if you can. Maybe you can pick up where you left off afterwards and maybe you won't. And just maybe, you will see things differently anyway, but who knows? Just do what you can to take the pressure off.  

See it as a learning curve perhaps if learning is something you enjoy. Learning how to be another kind of human to one you've been before, or possibly not letting it change anything. Whichever, just try and take a break from the future.

Things will change for a while and like having days off sick from school, see it as a long sick day, watch all that crap daytime tv, binge on netflix, watch all 8 seasons of Game of Thrones three times and knit a lot of jumpers. Remember the fondness we all have for taking a sick day from work, perhaps this time, on reflection, will be like an exaggerated version of that. Find your niche and don't feel under pressure to be anything or anyone you don't want to be. After it's over a new attitude for living in the now, seizing the day may change how you see everything but for me until I feel physically better I'm not going to make plans, I'm just going to wait and try to be the patient patient. 

Right now I can't find the energy or impetus to do my oil painting or photography but that will happen at some point, I just don't know when. For now I will continue to trust the doctors and take the medicines for however long they feel necessary knowing that it works and I hope this can give you some hope to do the same. 


11 May 2019

Scalp Cooling / Cold Cap (Paxman) for Chemo patients who want to keep their hair.

If you want to keep your hair (or most of it) during chemotherapy here's how I did it with the Paxman Scalp Cooling system. I want to get this blog post out there because I've noticed that hardly anyone has heard of scalp cooling or the cold cap so please do what you can to spread the word that chemotherapy doesn't always result in total hair loss. 

(I'm updating this blog post as I find out more information, I'm hoping to hear back from Paxman about how many hospitals have this stystem and if there is a way to fund raise for that to happen.

Before I start please note that this blog post isn't about what I think of how you look, or a criticism of anyone who chooses not to go down this road,  it's only about how I feel about myself and what to expect.  I'm not commenting on anyone else here, this is purely my personal feelings about my own appearance and why this has been so key to my recovery.   We all deal with things in our own ways and this is mine. I've seen on the Paxman site that many other women do feel this way, but as I continue to point out, you must deal with your recovery in your own way. 

So anyway, I have managed to keep most the hair on my scalp after four rounds of chemotherapy and I'm absolutely over the moon that the cold cap has worked so well. So many friends are absolutely gobsmacked that I don't look any different and that's really what I've been aiming for. While I think it may be slightly thinner, not too noticeable, I am prepared for it to thin because maybe re-growth will be changed but I will keep updating about that as time goes on. 

Sorry that I don't have photographs to illustrate me wearing the cold cap because, quite frankly, I took some and my big squidgy face poking out of the helmet thing just wasn't attractive, so I deleted them.  And that's kinda the whole point; what I look like is very important, and for my whole life, I've wanted to do everything I can to try and look as best as I can for my age and circumstances. You can see lots of pictures of what it looks like over on their site and their instagram which is @scalpcooling.

Over the last ten years I've got to that age where life has thrown a few curve balls where my appearance was getting out of my control.
So I did have a bit of liposuction during the menopause to remove the midriff bulge that came with that really unpleasant life change.  I've also had my teeth done because some of them were on the verge of falling out due to a bone disease which started in my twenties. I had implants so that I don't have to wear dentures, which as my dental magician says 'you are too young to be taking your teeth out at night'. So basically, I've done what I can to maintain my appearance, or at least combat some of the medical problems and ageing experiences I've had. 

When I was told I had breast cancer one of the first things I asked when he said the word 'chemo' was "will I loose my hair", the answer was yes, shortly followed by 'oh but we do have the cold cap machine here'. 

I straight away started to look into what this Paxman machine is  and also prepare myself for chemotherapy and operations. How was I going to manage with the physical toll of this and how much would it affect how I look and feel about my appearance. Breast cancer can bring some fairly brutal physical changes to a woman so I began to prepare my head for the things that could happen. 

If you are reading this and about to start chemo, please please please don't be put off by anything anyone, including nurses, say about the scalp cooler/cold cap. I say this because I have met a few people who say their nurses talked them out of it and some of my nurses gave me the impression that it was a really painful experience. But ...  You absolutely have to try this for yourself, because I can't praise it enough. Again, looking at the Paxman Scalp Cooling instagram page there are myths about the pain of it, about cutting your hair short and so on.

I don't really need to explain why it is important to me but without my Lion's mane to hide behind, I'm in trouble. Even when I go to the hairdressers I say "make sure there's enough hair to frame my face", which is code for "I need to hide behind it". So I hope that if you feel the same please know that you aren't alone. 

Is it a vanity thing? I don't know. There are so many small but annoying things happening after chemo, most aren't life threatening but when put together they add up, even itchy patches or a mouth ulcer can drive you mad, so like all the other medicines we take to cope with the side effects consider giving this a go. 

I feel like the hair loss is presented as such an unimportant side effect, the assumption being that because hair can grow back and it's not painful then you shouldn't be making a fuss about it. I don't give a flying fart who thinks I'm vain, if the way I look effects my mental health, then it is an important thing, maybe not to you, but to me and during this time where everything is out of control, here's something I can try for myself. Also it's pretty obvious to everyone that you have cancer if you are bald and there might be times when you just want to escape that reality and try to be normal.

So my point is, if your hair is important to you then make a fuss and do what you can to try this scalp cooling system, because if you have the same result as me you will be really pleased. Here's some info about what it is and how it's used. 

The Paxman Scalp Cooling machine is about two foot tall and sits on the floor next to you. Out of that runs a couple of tubes which plug into your helmet/hat/cap thing. There are a two layers of headgear to wear on your head and they are put on after your hair has been dampened with a water spray. Conditioner is also applied to the hair as well so that the cap doesn't pull when you remove it. 

The person getting you set up will try on a few caps to see which size you are. The first cap looks like a plastic brain thing and is filled with that stuff which freezes. (It's a good idea to get yourself a hair band, Alice band we used to call them, it's a stretchy thing about 1.5 inches wide and goes round the whole of your head). The first cap might dig in a bit on the edges, so if you wear your head-band you can cushion it across your forehead, along the hairline. 

Once your first cap is in place then a thick stretchy cap is put over the top of that to keep it in place. It has elastic on it to pull it really tight. This ensures the first 'freezing' cap is touching every part of your scalp which is very important because if it's not super tight then it might not work so well in some patches. Push it down as much as you can, if it feels really really tight you can loosen it off a bit but you do get used to it quickly.

Once all your hats/caps are in place they switch the machine on and the cap begins to freeze your scalp. Try and keep talking during the first ten minutes, get someone to distract you. The first time I thought it was painful for the first ten minutes, and this wore off during the day but every time I tried it after that I felt less pain and it became easier every time I used it.  

Like an ice-cream headache it's a bit of a shock but you do adjust. So within no time it just feels like a tight hat. Please try and hang on for the first ten minutes or so, it's such a small amount of discomfort for such a big reward. 

You need to wear the cold cap for a certain amount of time before and after the treatment, usually about half an hour or so. If you want all the information and photos of what it looks like then head over to https://paxmanscalpcooling.com/scalp-cooling

Having chemotherapy is a huge expense to the NHS, (as are the other immunotherapy drugs which are often part of the combination your oncologist may prescribe). I have no idea how many hospitals have scalp cooling systems but mine, the James Paget near Lowestoft, is really small and they have it, so I think if they do then most others will also. I think it's good for you to know that this invention is out there and being widely used to retain hair. 

I've put a couple of photos here of some plantsI'm growing  because I don't have many current photos of my hair. On Instagram stories you can find odd phone selfies but as I'm just not a fan of these I tend not to do them. I will try and get some more photos of how my hair is looking fairly soon, but trust me, it doesn't look any different.

As for the rest of my body hair, well, I still have some eyelashes and eyebrows but its gone from everywhere else. I'm totally loving not having to shave my legs and let's just say, everywhere is totally smooth and hairless! Weirdly I didn't notice it going, ok I'm very fair and not particularly hairy to start with, but I've no idea when and where it went! 

To look after my hair during chemo and using the Paxman I do a couple of things.  Firstly while it may be a right sight and a bit gunky with the conditioner, don't wash your hair for a few days after using the cold cap and having your Chemo.  When you do wash it do it very very gently, I bought baby shampoos and just slightly lathered it up, no rubbing. I use plenty of different conditioners; an after washing de-tangle spray and hair mask so that there is minimum hair pulling when I brush. I found the Coco And Eve hair mask got my hair lovely and silky before I started treatment to prevent it breaking or tangling. Next tip, don't brush it or wash it very often. Try and put up with dirty hair, it might even look thicker as a result. I stopped dyeing it too (to protect the roots from damage) and after a few months there was a fair bit of roots showing so I hunted down a wash in wash out colour. There's a Superdrug own brand one that is amazing, and cheap too! Several ladies at the hospital use this semi-permanent hair colour by Superdrug and I can't believe how good it is, it hasn't even faded or washed out much. 

If I hear any news from Paxman scalp cooling systems, I will add to this blog post and put information onto instagram too. If you or a friend are about to start chemo them maybe do some investigating and see if this is an option for you. If it is then consider yourself very fortunate that here's one element of this shitfest that you can try and control, because pretty much, all your other bodily functions will be doing some freak out reaction to the chemo. 

I have found that the effects of the chemo treatment have got gradually worse at time goes on, I believe it is cumulative and so after the fourth treatment I also got bad fatigue and nausea that I hadn't had before. You forget what normal feels like, the weirdness is constantly changing and it's hard to not want to push yourself into having a normal day. However, for me the drugs have totally worked as they should. My tumour has shrunk to less than one third it's original size, so much so that my operation will now be much less invasive. News of the operation will be in a few weeks time and if I find any pearls of wisdom to share about that be sure I will be ranting on about it somewhere. 

Sending love to anyone going through this, you are not alone. 


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.  
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