Janice Issitt                    Life and Style

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

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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.  

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

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