A Bra called Malice or Boris or Derek

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Bra, Brassiere, Over The Shoulder Boulder Holder, Tit sling, Cleavage Commando, Upper Topper Flopper Stopper.  

What do you call yours? I’ve been wanting to write something about this subject for a while as its a subject that’s close to my heart, literally. I realise it’s a subject that may alienate a good proportion of my followers although I know there are plenty of men out there who are equally as familiar with the subject. 

I feel like the bra probably was designed by someone who doesn’t need to wear one for all of their waking day and I feel like we need more bra wearers in STEM subjects to turn their brilliant minds the design of the brassiere.  There has to be another way surely. 

Those of you who know me know that I am much in need of a bra. I am not a member of the itty bitty titty club (apologies for any offence caused) I have what can only be described as a substantial bosom. I didn’t ask for them and in many ways they are a bit of a burden. 

I remember quite clearly when my boobs started to become a bit of an issue.  As a little girl growing up with an older sister I couldn’t wait to get my boobs. I would steal my sisters bra’s and pop socks in or an orange and she would go mad (I also used to borrow her shoes but that’s another story) I’m sure my sister won’t mind me sharing the irony in this recollection as nowadays and for a long while now if she were to borrow my bra she would be stuffing the cups with a duvet or cantaloupe melon. Apologies Kaz. Because yes, I came from a household of nice normal little boobs. So mine came as a bit of a shock. 

Like I say, my first memory of my own boobs being slightly noticeable was when I was around 12. I was super skinny. So skinny that my nickname was Skellybones or Sparrow legs. An older teenage boy I knew commented one day, wow you’ve got boobs, where did they come from  I shocked, looked down and was surprised.  My mom had been suggesting for some time that I give up my vest for a bra but none of the other girls in my class wore one so I was loathe to do so. I had to succumb and my first proper bras were a twin pack of berlei starter bras, one pink floral, one lilac floral from the Kay’s catalogue and so it had begun  

The second episode was similar, a couple of years later. I was sunbathing in my friends back garden in a newly purchased string bikini. Her sisters boyfriend arrived. We knew each other, had done for a while but I guess he’d only seen me in generally baggy clothes, as was my want.. He took a few pictures of me. I later found out that he had also taken some from the upstairs window and that he had also then shown them to the lads at youth club, commenting who knew she had all that going on under her t shirt.. Looking back it feels pervy and invasive but they were different times and I’d not yet released my inner feminist but it was the start of the boobs becoming seen as a separate entity to me. A glimpse of what I was to learn of how some men are completely mesmerised by a pair of mammary glands.

I think I then started a campaign to disguise my boobs by way of loose fitting clothes and hunched shoulders. This lasted into my thirties when new found confidence and a attitude of if you’ve got it flaunt it emerged. It was also a realisation that try as I might I couldn’t really disguise them. I often say to my hubby or daughter, do my boobs look big in this and they generally nod and say your boobs are just big. Full stop. They look small in nothing, not even those minimiser bras that were a thing I tried back in the day.

So now I must come on to the great bra scandal. Those of us who suffer as I do are literally discriminated against. Not for me a trip to primarni  or Asda to throw a two pack of reasonably priced bras in the basket. No for me, many years and pounds spent in expensive and specialist lingerie shops. If I added up my lifetime spend on bras and swimwear I could be living the life in some swanky penthouse flat or country pile. Bras for bigger boobs are nothing short of daylight robbery. I get there is  more material but the manufacturing g process is basically the same (give or take a small amount of scaffolding) so I can’t understand why instead of £12.99 for two I have to pay £40 for one. A couple of bikinis for holidays, not much change from 200 quid. Not only that but, many bra manufacturers, despite saying they cater for bigger busts actually don’t. They stop at certain cup sizes like E or F. If you are Good God or above you’ve basically shit it.

Of course my hunt for bras was recently intensified. I have always worn under wired bras and after years of fruitless searching and shelling out dollars for bras that were like wearing a metal band of scratchy uncomfortable-ness, I had settled on a brand and style that suited. Over the years I have had to face the dread of a style being discontinued and frantically panic buying all remaining stock. Also having the same bra in all the colours they do. 

Now I needed to change to a soft, mainly cotton non-wired bra. Easy enough I hear you say..WRONG. There are specialist places for post surgery and radiotherapy bras. But did they go up to my cup size, no they didn’t. Clearly only women of specific bra size get breast cancer right? I can’t remember how many I must have tried on. All this at a time when it was the last thing I wanted to be doing. I would hazard a guess at the 30 plus mark. Even bought about half a dozen of them in attempt to find something suitable. At this point I refer you back to previous expenditure and add a few quid for a specialist bra but lucky you it’s vat free because it’s medical. I have even written to a few manufacturers such was my desperation. The response ranged from nothing to we are thinking of expanding our range in the future. 

So the choices currently are a bra that gives you a mono boob suitable for resting your chin or cup of tea on or a sheepdog style (round em up and separate em) that creates a chasm between your cleavage but means you can’t put your arms down because your boobs are in your armpits. This style also gives you a pointy boob that will have a random passerby’s eye out if you turn sharply. I joke about it but I think you will feel my frustration and glimpse how little things like this can really chip away at the old self-confidence and feel-good factor. 

Then we see this other strange phenomenon .  The bras available to me have something disturbing in common. So little Miss Itty Bitty’s bras are delicate wisps of lace named Willow, Amelie, Amari, Madeleine and the like  

The bras in my size range are called Doreen, Eileen, Cynthia and Bertha. I kid you not, they might as well be called Derek, Bruce , Hairy trucker, or Boris. There is even a Delicate Doreen that is not in the least bit delicate. What are these designers thinking of. It doesn’t inspire you to buy or make you feel good about yourself when wearing. It’s the insult to add to the injury. Spend shit loads of money on a implementation of torture and be insulted into the bargain.

I don’t know what’s to be done. I feel I need to rise up and start a revolution and I just might as soon as I find a bra that I can comfortably wear for the duration of such an uprising. Who’s with me?

One year on and other anniversaries

 

anniversary

/anɪˈvəːs(ə)ri/

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noun

noun: anniversary; plural noun: anniversaries

1. the date on which an event took place or an institution was founded in a previous year.

   "the 50th anniversary of the Battle of Britain"

   Similar:

   jubilee

   commemoration

   • the date on which a couple were married in a previous year.

     "he even forgot our tenth anniversary!"
   • INFORMAL

     the date on which a romance began in a previous month or week.

Origin

I think we all remember the Queen having an annus horribilis, well for many of us 2020 will definitely fit the bill on that score. Anniversaries can be a dual edged sword. We have the good ones when we celebrate or commemorate the length of time passed such as birthday, wedding or when something significant and good happened.  Others are not so good such as the death of a loved one or something bad happening. 

For me, I have a number of significant anniversaries at the moment that are memorable for all the wrong reasons. Recently it was 12 months since I received my breast cancer diagnosis and today is the day one year ago that I had my surgery. I have many negative associations with both of those events but in an effort to maintain the tenuous  link to my sanity, I am trying to focus on the positives. I’m lucky that I got an early diagnosis due to the NHS screening programme. I’m lucky that the NHS were there to look after me and move quickly to have surgery and treatment that will have ultimately saved or at the very least prolonged my life. Lucky that so many friends and family were there to look after and support me. Kind words, flowers, gifts, hugs, cards, lifts to appointments, all these intended and did carry me through the dark times. 

I said I was going to focus on the positives but I would be lying if I said there weren’t any difficult times and it’s important to acknowledge those. I won’t bore you with all the little details of the impact that cancer and it’s invasive treatment has on you and your family but I will say that it’s like that old analogy of dropping a stone into a pool. Those ripples are far reaching and often you feel like you’ve been hit by a wave instead. To stay with the water analogy, it’s also like those waves are eroding the coastline at times. The impact is not to be underestimated and it’s easy to think, it’s been a year, I should be ok now, things should be back to my normal. (Notice I said my normal, just so those of you who know me can’t say I was never normal - in honesty I never proclaimed I was 😂) It feels like it has gone very quickly but marking that passage of time also makes me realise I still have some way to go.

All of this set against a backdrop of a global pandemic. When I do things, I always do them well. This week I have been contemplating my anniversaries and my journey whilst coming to terms with lockdown 2.  I have been speaking to many friends and colleagues struggling and on a level beyond the last lockdown. I can’t say I’m thrilled about it myself but we have to get through it. We all need to look out for each other and it’s also vitally important that we look after ourselves. Self-care is a word that’s bandied about quite a lot but it has never been more important and we shouldn’t feel guilty about taking time out to recharge our internal batteries. 

So to you all, I have two things to ask. 

1. Do something everyday that you enjoy and that is for you. However every small it might be.

2. If you get offered health screening don’t put if off just do it. 

I’m off now to drink to my anniversary, along with a nice home cooked meal and a then a long soak in the bath with a good book. 

The Club No one wanted to join

I started writing this blog post in May and I’ve returned to it a couple of times but not finished it or been motivated to post it. I think there could be a few reasons why, which may be covered as I continue. Anyway I decided to pick it up again and have edited it to bring it up to date. 

May is always a difficult month for me.

So many of my family have birthdays including myself so there are usually celebrations and holidays but also it’s a sad time as we celebrate my son Dans birthday but mourn his loss too. This year of course has been very different. 

I wrote that I use writing, just as I do talking, as a way to order my thoughts and feelings. (Those who know me know I love to talk) but it’s apparent that just writing it down is often enough for me and I don’t always feel the need to go a step further and make it fit for general publication. On this occasion I think I felt it was just a bit maudlin and I would spare others from reading it. 

Also to add, I’m not looking for sympathy or acknowledgement by writing. It helps me and I hope that it may help others in a similar situation. Some of you tell me that it does.

At the time of writing I had been experiencing a wide range of emotions. It had been difficult for me to work through some of these so I had some support both professional and from my wonderful friends to do this. 

Somebody said to me recently ‘welcome to the club nobody wanted to join’ it really resonated with me.
I got to thinking about trauma and it’s effects. Is it cumulative on the effect on your personal resilience. 

I won’t go into details for the reasons I’ve mentioned earlier but I have faced quite a lot of trauma over the years. As a child and as an adult with things like divorce, damaging relationships, bereavement and illness. So whilst the club nobody wants to join in this instance referred to a cancer diagnosis, I realised I’m also a paid up member of others just like it. 

I have danced since I was tiny and have done many shows and exams. So it’s no wonder that I am able to use those skills to act ok in difficult situations. I think it’s why I do well in things like interviews and presentations. I put the eyes and teeth mask on. If I’m doing it, then are others too? Many unexpected suicide cases show it’s likely. 

Whilst it’s a useful thing to be able to do, it can, if done to excess become dangerous. In my late thirties I ended up mentally quite unwell. It became impossible to keep the mask on and a bit like pan-stick make-up slides off when you sweat under stage lights so my smiley make up mask skid off because of the tears I couldn’t stop from falling. It was a dark time but with help I got through it and was motivated to make some major life changes. A divorce, a house move and a new job. I felt back in control of my life and content. A great place to be. I was lucky, others didn’t make it. I learnt that I must take care of me to be able to be there for the long haul and to be there for my friends and family. 

Fast forward to this August and things are starting to return to some new kind of normal for me, post cancer and living through a pandemic aside. I’m back working albeit from home and also not up to full hours yet. One of the reasons for lack of blog writing. 

I have found it physically and emotionally draining doing some of the simple things I previously took for granted. There have been some other casualties too. I have struggled to exercise as much as I had been and would like. Housework? Forget about it. Knitting, Cooking, reading, have all taken a hit. Even making time for friends. It’s become a fine balance between being able to function as a paid employee and maintain some kind of wellbeing for myself. The fatigue is tough to live with. 

So I come back to my earlier point about trauma. If you suffer one episode of trauma in your life, are you able to handle it and bounce back without too much impact? If something else happens do you have less of the initial resilience and does it take more out of you? And so on. Does it mean that someone who’s first trauma was a cancer diagnosis and treatment, could recover more easily than someone like me who has has suffered other traumas such as a loss of a child. It’s a fascinating concept. It links to some of the experiences of my fire fighter colleagues  who face traumatic events on a constant basis And how when coupled with devastating life events end up in a mental health crisis or in some cases PTSD. 

Having been quite low back in May I felt I was back on a fairly even keel but it’s amazing how fragile that keel actually can be. Upon hearing some terrible news about a friend and colleague who lost their daughter recently I felt side walled again. Of course the circumstances resonated with me took me back to the despair I felt after Daniels death  and for what I knew she and her family are going through. 

I’m lucky, yes I really am and I am still able to count my blessings but recognising the fragility of where I am emotionally has been a timely reminder for me. It is also what has probably brought me back to my writing. It’s ok to take the smiley mask off from time to time rather than waiting for it to slip. 

This week in an attempt to keep moving forward, I have been focusing on reframes. This involves taking negative thoughts and reframing them into something more positive. For example:

COVID-19 is never going to end becomes the social distancing efforts we are taking are proven  in reducing spread of the virus. It is having less impact.  Or:

It’s selfish of me to prioritise my health and well-being becomes self care is not selfish and taking care of myself helps me to be there for others. My health is priceless. 

I think it is making a difference and helping to shift my perspective to a happier place, without the use of the mask. I’ll keep you posted. 

Try it and let me know how you get on.

Moving Forward

The title for this blog originates from a coincidence. I’ve been doing this 30 day song challenge that you may have seen on social media. Today was a song that moves you forward. There were a few songs on the short list but I knew I would choose one from Anastasia’s Freak of nature album. This album came out when I was in a pretty dark place in my life but I found it relatable, motivating and inspiring. It became the soundtrack to big life changes for me. I still play it when I need firing up. I have the cd in my car and put it on as required. For example on my way to an interview.

Back to the coincidence though, in the post today I received a book called ‘Moving Forward’ from my Breast Cancer Care Team.
The timing was pretty apt as I am planning my return to work -albeit from home. Despite listening to my songs this morning I certainly wasn’t feeling fired up. Quite the opposite sadly. I read a bit of the book but it didn’t help so I put it aside.  What I am finding is that if I try to do something a little more taxing than the usual household pottering, dishwasher duties, cooking, laundry etc I get wiped out. Just when I think I’m ok I get these little set backs. It’s frustrating.
There have been tears today and it’s also making me quite anxious. I’m worried about how I am going to cope when I’m back in the real world. Will my brain fog render me incapable of doing my job. Making simple decisions at home is difficult so how will this translate in the workplace. Will my memory improve once I start flexing the brain muscle or will it hurt and complain like my weak shoulder is currently.
Even more worrying is the niggling thought that this might be as good as it gets. I have to take the hormone therapy to prevent the cancer returning for five years so some of these side effects could be long term.
I know I need to move forward and I am really trying but sometimes it feels as if I take one step forward and then two steps back. I know I need to be brave and take that leap of faith. I know I will be supported but as anyone knows who has suffered from anxiety is that it has one of those annoying droning loud voices that can be hard to ignore at times. I also know I need to not be too hard on myself.

It’s a scary world at the moment and this is the backdrop to my recovery so I accept that it’s not rocket science that I might be wobbling. I just need to see my way forward or more importantly, feel it.
So tomorrow is a song you think everyone should listen to.  I haven’t chosen yet but I’m going to start the day with some mindfulness then I’m going to play my song choices loudly and hopefully get this show back on the road. Wish me luck. This weeble might wobble but it won’t fall down.

The Other C Word

Apologies that I’ve been quiet on the blog front recently. I actually started to write this one over a month ago. It was at the time of Storm Ciara and Dennis. There had also been loss of life. High profile news was that of Caroline Flack. Closer to home the suicide of one of our firefighters and the death of a wife of a fire fighter in an rtc. I didn’t finish what I was writing as it dwelt on sadness and I just didn’t feel I wanted to put it out there. I just didn’t feel myself. Notice I didn’t say normal..if you know me, you know. So I have included some of it below but left out other parts.

Thinking of why I hadn’t written recently I reflected that maybe it was because I didn’t have anything to write about. My radiotherapy treatment had finished so I was seeing less people. I’d had three weeks of daily trips to hospital. Lifts provided by my amazing support network. Maybe the sadness mentioned above had an effect. Maybe the effects of my radio, tiredness, soreness and skin blistering were also a factor. Most likely I think it was a combination of all of those. Looking back it’s seems a little ironic that I felt I had nothing to share given the situation we all now find ourselves in with the grip of the Coronavirus pandemic. I got ahead of the curve with this game.

The weather had been rubbish. I had no reason to go out. I didn’t feel like going out but I had set myself a challenge of taking part in Cancer Reserach UK Walk All Over Cancer through March. This requires that you walk 10000 steps a day. Maybe over-ambitiously I strode out on day 1 to complete my steps. I did it. I was absolutely exhausted and very uncomfortable. This was the first week after my radiotherapy finished. They had told me that as it is cumulative I would probably have worsening symptoms over the next three to four weeks then things should pick up. I hadn’t really thought much of that but as I undressed after my active day I discovered I had developed blisters on the underside of my boob. Not great. After taking advice, I engaged a proxy to help with my steps (I’m in a team so the others were also on it for me) and was told to rest up and restrict my movement as much as possible. Next I got blisters under my arm and on my troublesome lymph node scar. The radiographer also suggested I sit with my boob out and arm above my head to get the air to it. I mean in what kind of world was that going to work? It’s March and I don’t live alone or in a house that’s not overlooked. (I apologise for any troubling mental images that this may have caused)
Over the next couple of weeks I felt like I was back to square one, as in, post surgery.  I couldn’t get comfy to sleep, sit or move. I was tired and uncomfy. I was back to sleeping in the chair or in bed propped up with my v cushion. I felt quite frustrated with myself. I still do to an extent, as I just couldn’t do anything without struggling or getting worn out. In the end I gave in to it. Ate rubbish and binge watched Tv. Turns out I was just in training for self isolation.

I was given some special dressings for the blisters and gradually things started to improve. Wearing a bra in increasing amounts of time has felt like a massive achievement. Same approach with walking as I began with short walks around the block, building up to longer walks along the canal towpath and around the nearby cemetery. Again these have felt like big things for me. If ever I needed a reminder not to take things for granted, I’ve had it again.

Knowing how much it can affect how I feel, I was trying to eat healthier too. That has been hampered by the current Covid situation and the rest of the family joining me in social distancing. There is a lot of home baking going on and inventive use of ingredients. I suppose it’s counterbalanced by no meals out or takeaways. The alcohol intake may have increased slightly. I think that might be having to share the tv remote though.
We can all be guilty of taking things for granted such as being able to do some of the most basic and simple things. I have had quite a few reminders of this recently and most of the world also now finds itself in a similar situation. A unique and strange time for all. I hope you are all keeping well both physically and mentally. Take time to see the positives, rest and heal mind and body. Be kind to yourself and each other. After the storm comes the rainbow.

Traditions & Routines

I think there must only be a very few people out there who don’t have routines in their life. Sometimes these routines become traditions and can continue from generation to generation so what’s the difference?
For me routine is about what time you go to bed, put the washing on or do the shopping. I’m not an especially methodical person so my routines aren’t as many as someone like my husband who errs on the OCD side. He has daily routines. Where he puts his things, laying out his clothes for the next day, which way round the coffee and teaspoons go. For him it puts him out if he doesn’t follow them or they get interrupted whereas I am happy to chop and change and go with the flow. Some routines like fish on Fridays are of course based in tradition and so the crossover begins.
Just now my usual routines have had to be replaced with new ones. No early morning alarms means no night before planning and prepping. I sleep poorly so rise late. Unless I have a hospital appointment I potter in the kitchen before doing some yoga. I try to do a few chores before resting up in the afternoon with tv box sets.  Eventually these will go back to the old ways but I might keep some like the yoga.
Then there are short lived routines such as when you go away on holiday. We always like to off load luggage, go get a drink then venture out to explore and buy a few provisions. You discover places that you like to eat and your new routine becomes something like getting up , going out and doing something like a trip or museum then back to the pool to chill. Back to the room and shower and then out. You may never go back to that place so those routines end to be replaced by something similar somewhere else. If you do go back you will quickly feel at home by falling back into the former ways.
What then makes a tradition? Christmas is probably a good example to think about for most people. Our parents may have started something when we were children that we repeat with our own children. Maybe it was something their parents did. Or it could be that you see or hear something others do and make that part of your celebrations. Families grow so traditions grow or merge.
When my children were little we put the tree up overnight  and told them it was the fairies that did it. I’m fairly sure my mom did the same. I added fairy dust down the stairs something I learnt from a friend. On Christmas Eve mince pies were baked and Santa left a drink sometimes whiskey latterly baileys and a mince pie. A carrot for the reindeers and a bucket of water for them to drink from. New pyjamas and a Christmas book before bed. They would always watch Raymond Briggs Snowman and Father Christmas. When I met the current Mrs Gail his birthday being on Christmas Eve that then changed the tradition. A special meal for the evening. My nieces have a Christmas Eve tradition as adults of having a sherry and wrapping presents.
We recently had a discussion about the Christmas stocking tradition, as children we didn’t have them. Our presents came in a pillow case but we always had one special present that wasn’t with the others. It was always hidden to be discovered later. One such memory of mine is getting a high hair for my Tiny Tears. Whilst dinner was being cooked I was sent to the pantry to fetch something and in there I found my Tiny Tears resplendent in her new highchair. This tradition I continued with my own children. Anyway back to the stockings. I always included things like chocolate coins, crayons, tubes of sweets, a toy car for example. These gifts from Santa were opened upstairs on the bed before we came down for present opening proper. I still do a stocking for them now. My niece’s wife has also had to pick up the mantle doing a stocking for her in place of her mom.
Another one is taking down the decorations by twelfth night based on religious tradition, Epiphany. Interestingly our mom says witches fly on twelfth night and if they see your decorations you will have bad luck so a superstition based on tradition. What’s even more fascinating is this is based on the Italian tradition of Befana the witch. How this has become part of our family rituals long before the tinterwebthingy is a mystery.

Traditional is a word that has become associated with something outdated or old fashioned but I think that a little unfair.    These things be they routines, superstitions or traditions give us a sense of familiarity that is comforting. When things are hectic or out of control they give us an anchor. Tradition makes us feel we identify with our kin and gives us a warm feeling of home.

Tell me about yours or if you don’t have any tell me why you don't need them. If you don’t have any but like the idea then why not start your own.

Kawasaki - the disease not the motorbike

January 26th is International Kawasaki Disease Awareness Day.

Had you heard of it before you knew me? Would you know the symptoms? Do you know how devastating this disease can be?
“Kawasaki Disease is the leading cause of acquired heart disease in U.K. children. With over 1,000 hospital admissions* for Kawasaki Disease in the U.K. each year and rapidly on the rise, it’s more common than bacterial meningitis and measles – even with the current outbreak. As parents, we’d like to think we knew these serious diseases. But few parents and far too few doctors know Kawasaki Disease. Increasingly common and just as serious – I’m committed to changing that.” [Rachael founder of Societi]

For us our journey with KD began long before we knew what it was. Daniel was my second baby and  although he was more demanding than Luke, I wouldn’t have said I was a neurotic parent. It was 1993 and he was about 15 months old when he woke up poorly. He was running a temperature, was quite flushed and very miserable. I suspected an ear or throat infection so got an appointment with our Gp. He suspected an infection too and gave me antibiotics as well as paracetamol. After a night of broken sleep trying to sooth my crying baby as I got him undressed the next morning I noticed a rash across his body. Another trip to the GP and he suggested it might be a reaction to the antibiotics and to keep an eye on him. His symptoms began to get worse. Still a high temperature, red eyes and cheeks, runny nose and cough. He wasn’t keeping food down either. On the evening I got a phone call from my Gp which seemed very out of the ordinary. Dr Saleem was quite old fashioned in his manner and could seem quite brusque but I trusted him and this call backed up my intuition about him. He asked ‘How is the boy?’ I explained that he wasn’t good, if anything worse. He told me, he had been playing on his mind and he wasn’t sure about the symptoms and that if he didn’t improve or got worse to go to A&E. That night was just horrendous. Daniel kept us awake crying, he was burning up and the final straw came when he threw up and it was luminous green. A trip to A&E was needed.
When we first arrived they listened to our concerns. His temperature was too high so he was stripped and given paracetamol. We were looked after by a male nurse who was lovely. We waited to see a doctor but when he came he was very dismissive. Said it was most likely a virus with an allergic reaction to the antibiotics and to go home and only come back if it persisted or got worse. I remember feeling like a fraud and that I was wasting their time. The nurse though was great. I think he disagreed with the Dr. He said that he would get a dose of Piriton for him before we left. He then suggested if he was due a feed to give it to him to hang around a little because if it was an allergic reaction we would see some clear improvement within 20 minutes. He came back to check on us and there was no improvement. He ran his obs and his temperature was even higher over 100. He said he wasn’t happy and that he was going to page the on call paediatrician. When this guy arrived it was all panic stations. Meningitis was mentioned, then scarlet fever then slapped cheek syndrome. He wanted him admitted so off we all went to the children’s ward. As we entered the matron appeared, she was quite formidable, much like the Hattie Jacques character from Carry on films. She said to the doctor ‘What is wrong with that child’ the young doctor explained that he wasn’t sure and she proceeded to tell him Daniel couldn’t come on to the ward in case he was contagious as she had lots of sick children who would be put at risk. Seeing my face she said, clearly this child is sick too and too hot. She then ushered us into what I can only describe as a store cupboard. She listened to his symptoms and suggested it might be measles. She went to get the biggest dose of paracetamol suspension I have ever seen plus two chairs. When I baulked and said he hasn’t long had some she said it was fine and it was crucial we get his temperature down. She went off to make a call and eventually we were found a room in another part of the hospital where he could be put in isolation.
We were seen by a senior paediatric consultant who diagnosed measles. I explained that Dan had been vaccinated.  He was quite patronising and told me it was lucky he had been, as measles was very serious and if he hadn’t have been it could be worse even fatal (oh the irony) he offered that we could be transferred to the infectious disease centre at East Birmingham hospital or if I was happy to, I could nurse him at home. I decided to go for this option.
The following couple of weeks are a blur if I’m honest. I had an old style carriage pram which Dan had pretty much outgrown but he could lie down flat in it. So it was brought into the living room and here was where we nursed him. We could rock him in there to give our arms a rest and soothe him to try to get some sleep. He was sick a lot. He didn’t really eat much so I kept trying him with bottles as much as I could. His temperature continued to spike up and down. His eyes were sore, his tongue too and his lips became red and cracked. His hands and feet were red and the skin started to peel. I remember feeling helpless. He had become so weak. He was a chubby toddler and the weight had fallen off him. He was pale, listless, miserable and could barely stand.
One morning taking Luke to school I bumped into my health visitor. She said hello, how’s things? (you don’t spend so much time at clinic with baby number two). I blurted out how poorly Dan had been and how he just didn’t seem to be picking up. She looked at him and agreed he looked unwell. She took my address and said she would call in later. True to her word, she did. She weighed him and he had gone from the 90th percentile to the 25th. A massive weight loss. She was lovely, she listened and took me seriously but didn’t know what was wrong. She agreed he was not a well boy. She wrote a letter with a hospital referral for tests.
There were no beds at the Birmingham Children’s Hospital so we were sent to the Children’s ward at Dudley Road. Initially they suspected leukaemia but that got ruled out. He had lots of tests but nothing showed up. We were in about a week. They did try to discharge him midway through and he promptly projectile vomited across the whole ward so we stayed. They decided he had a post measles immune reaction and that everything was making him ill. Basically they didn’t know.
Eventually Dan returned back to his usual self but it had been a long haul. None of my kids either before or since have ever been so ill. With hindsight he did get cold hands and feet and sometimes he would cry, get hot and bothered and need to sleep it off. Nothing to cause alarm at the time but clearly his circulation wasn’t what it should have been.

My next encounter with KD was when I watched a Panorama documentary about the disease. It was hard hitting and I recall thinking how much the symptoms sounded like how Dan had been. It was 1996. They say you should never dwell on ifs and maybes but I do regret not taking that further.

Then on 17th May 1997 our relationship with KD got very real with devastating consequences. It was Dan’s 5th birthday and during his party he became unwell. Feeling sick and in pain. He feel asleep then woke up saying he felt better so we went to my in-laws for party number two - the FA Cup final. During this Dan told me he felt sick. We went upstairs where he collapsed. His heart had stopped. We didn’t know it yet but KD had caused a coronary aneurysm in the aorta, which had become blocked.

I won’t dwell on what followed but I kind of just knew. I told the doctors at the hospital about his KD symptoms. They tried to save him but he was gone. We were broken.

His post mortem stated that they were 99% sure he had had Kawasaki disease back when he was 15 months old. They said his vascular system was like that of an old mans and he was never going to make old bones. They said it was amazing that he didn’t have any other symptoms causing things such as amputations. They said if he presented now with these symptoms he would more likely get diagnosed. I’m not sure I agree with that. Even now 23 years later too few medical professionals still understand KD and it’s presenting symptoms.

So it is that our journey with KD never ends. It’s part of the fabric of our family. That’s why I’ve written this today. To raise awareness. To try to prevent others from what we have had to go through. Please if you’ve read this far, help to spread awareness too. #ForDan

A Glimpse of the Black Dog

I consider myself lucky that I have not had a visit from the black dog for many years. Yesterday was not a good day and it felt a little like the days when that damned dog was my constant companion. Everyone who knows me knows I’m no dog lover and I make no exception for the black dog. The prospect of him coming for a visit was as unwelcome as it was unexpected. Luckily I’ve woken up today and he has silently passed by the door and on his way which is a relief.
On reflection I think I was teetering on the cusp of a bad day all week. I’ve woken up a couple of days with a headache and I’ve not been sleeping well again. It’s been quite a busy week with hospital trips and I felt a little fatigued by it all.
Thursday ended well with a bite to eat out with a group of my girlfriends. I had a good time, three drinks and it wasn’t a late finish. Seems like I may have become a lightweight though because I had a terrible night with a headache and hot sweats so very little sleep. I eventually slipped into a decent sleep as everyone else was leaving for work and then was woken by my alarm shortly after.
It was a the day of my CT scan for my radiotherapy but I hadn’t felt like that was a big deal even turning down offers of support to come with me. I’m not sure if that was the wrong decision and I had been kidding myself, I certainly didn’t feel apprehensive but nonetheless I woke up with that heavy feeling, like the dog has slipped in overnight and is lying across your chest.
It’s hard to describe if you’ve never felt it. I felt bone tired and like I was carrying an invisible weight. I got myself ready and went off to my appointment. There was lots of information (again) more detailed perhaps than before and as a result of my CT scan the team gave me three tattoos that will enable them to line me up correctly every time whilst I’m having my treatment. This is to try to keep damage to the healthy cells to a minimum. So in my 54th year I’ve achieved another milestone of my first tattoo. I don’t think I’ll be repeating it though. I was also given my start date for my treatment which is not as soon as I had hoped so that was another little chink.
Whilst I was in the Unit someone got to ring the bell to say they were cancer free. This was lovely and everything stopped so we could all applaud but to me in my delicate state it was also somehow a stark reminder that this is real and I am a cancer patient. Sounds silly I know with everything that’s happened so far but there you are, it’s felt like I’m in some kind of no mans land for a while whilst I’ve been recovering from my surgery and waiting for my treatment and that has been a little surreal.
After my appointment I headed to the nearby retail park but even retail therapy couldn’t lift my spirits so I headed home. The weather was awful so I decided to make myself a hot chocolate, settle on the sofa, crank up the heating and watch a bit of junk tv.
So there my hubby found me when he came home, having a good blart. (Me not him) I think he was a little surprised as I’ve been so upbeat all the way through and he was also a little disconcerted as I don’t usually cry much. I wasn’t really able to explain what was wrong and he then felt bad for not coming to the hospital with me but it really was my choice to go alone and I don’t necessarily think that was the problem.
For anyone who has had depression before it’s always a concern that this isn’t just a bad day and that this is the start of a period of being ill again but thankfully I have slept a bit better and woken up without that awful feeling today so I can breathe deeply, relax and enjoy my weekend. Dog free.