7 Weeks Post Mastectomy and Reconstruction

I didn't think I would be sitting here with a drain at my side as I am right now.

Seven weeks ago I went in for a double mastectomy and reconstruction in the hope that not only would I be cancer free but I would at least be left with breasts.

Sadly it wasn't my destiny.

Having had one implant removed 2 weeks ago due to an abcess and infection, I was hoping that the other one would be saved.

Everything was going really well up until Thursday of last week when it started to seep a little then by Good Friday it was really discharging, so much so that we had to change the dressings at home.

Thank goodness my surgeon had given me her mobile number so we were able to text her with photographs of the discharge and where it was leaking from.  It was the first time I had ever seen the site and as my son said it was rather like zombie flesh.

I was told to go to the womens ward for 2pm on Saturday but that morning I received a text asking me not to eat or drink that day "just in case".

To be honest with you at that point I knew that excision was inevitable.

She was held up all day so it was gone 5 by the time I saw her but at least I had a hospital bed and J was with me.

She squeezed the breast and nothing seemed to track from the other side but the source was deep seated so behind the implant.

I was taken into surgery at about 6.30.

Putting me to sleep was hell. They tried to canulate my left arm because the op was being done on my right side but the veins are ravaged and honestly it was as though they were driving nails into my veins. My surgeon tried her best to distract me, bless her, but it was horrid and took me right back to the days of chemo. I began to shake with fear, couldn't stop myself at which point she called a halt and told them to canulate the other side and they would work around me.

The cannula went in the other side straight away with nothing more than a pin prick sensation.

When I came around from the anaesthetic I had the shakes but the nurses stayed with me giving me pain relief until it subsided and my pain was managed. 

I even managed to chat about autism and helped a grandma whose 4 year old grandson had just been diagnosed with aspergers. It was nice to know that even at such a bad time for me I was able to help somebody.

The pain this time was incredible stinging.

The surgeon explained that when she opened me up she found a track from the original infection on the other side to this side. She hadn't removed both implants because she thought that there was a bit of hope for me and didn't want me to wake up to the shock of both being taken. I totally "get" that and I am so grateful that she showed humanity and care in that way because there is always hope.

There was no abscess this time but the infection was deep seated so she had to really scrub me out. I had been on antibiotics for over 6 weeks so she wanted me off them.

The next day when she visited me, she was able to flush the wounds out with a local anaesthetic which really did help while the initial healing took place.

2ish days post surgery and each day is better.

I have a drain attached which will be removed tomorrow (with hope) and the stitches will be taken out on Monday.

There is still a bit of damaged tissue remaining which she wasn't able to remove so hopefully that will heal now but there is the possibility of having a VAC fitted to that in order to speed up the healing process. I really hope I don't need one!!!

There IS a purpose to all of this, I just don't know what it is yet.

Life is Good

I really feel at peace with life right now.

I am in a good place for once in my life.

The fog is starting to lift from my mind, my thought processes are becoming clearer, I am beginning to get myself back after the last 4 1/2 years of hell.

Things have changed so much during that time, life doesn't stand still just because you are fighting for your life.

Cost of living has gone up (allot) and my husbands wages have gone down (allot), with me not working since 2009 - we are under pressure economically. I never ever thought that we would be in this situation at this stage of our life together but having said that I never ever thought that I would get cancer TWICE.

Over the last week or so we have made some big decisions. We are going to down scale what we have so that we can consolidate our finances whilst supporting our youngest son through a difficult transition to a new school (I will cover that one in a post of its own). With him being on the Autistic spectrum its important to channel my energies into him.

During this time I am going to do more courses and studying so that when the time is right I can launch a brand new business. 

The thoughts are in my head at the moment, still in that brain storming phase before I put pen to paper and a plan of how I am going to achieve these goals.

Big changes in our lives but exciting times really. 

Things to look forward to.

At the end of the day I have a most beautiful soul mate in my pony Cola, I have my dogs, a fabulous husband and two (stressful) but gorgeous sons, an amazing support network of brilliant friends and most of all I have my life and my health. 

Life is good.

Talk! Speak! Communicate!

I thought that the quote in this picture was so right until I read it a few more times and thought about it. 

Now I am going to contradict this picture..... 

OK sometimes it is good to keep quiet about things because you know that others just don't "get" you BUT isn't it right to try to help people understand? (note here I used the world help rather than make).

Keeping silent about things because you think others won't understand is the wrong approach I feel.

I know there are people out there reading my blog who haven't had cancer or breast cancer so how can they understand what my journey has been like?

Indeed.... how can I understand the journey of a fellow breast cancer patient? I am not her and she is not me.

I think that God gave us a voice, he gave us communication and therefore its wrong to not use these gifts.

Today I received a lovely message telling me how my openness about my breast cancer journey has helped take away the fear of it in her life. Had I remained silent because people didn't understand I would not have helped that person.

My sons are on the autistic spectrum.

Decades ago, these children would have been sectioned and put into a special "hospital", their "condition" would not have been talked about, kept quiet, silent. Some children would be written off as naughty and a bad lot!!!!

Talking about Autism leads to greater awareness, tolerance, acceptance.......

Years ago we lived in communities and we saw all of the different things that could BE a person. There was no medical intervention, no TV or magazines to tell us how we should look, there were no dentists and you were lucky if you got to the age of 40.......

In these communities we would see disabled people, blind, deaf, diseased, those with no teeth, we would see birth and we would see death.

In this perfect century in which we live we are sheltered from such things and as a result we have no empathy or tolerance.

So my message in this post is................

My Baby is 11 Tomorrow

Just looking at these photos now, I just cannot put into words the deep love I feel for my little boy. All those years ago he came quickly into our lives like a hurricane and now he is maturing into a caring and loving boy who I am so proud of.

One Month On

I can't believe that it has been a month since I last wrote on my blog. So much has happened in that time I honestly don't know where to begin.

I think I will do a little summary of what has been happening and then do a seperate post on each of the subjects:

• We welcomed Snowy into our lives
• The Dog Insurance Company stitched us up
• Cola had a bad back
• Breast Cancer hormone treatment
• Radiotherapy set up session
• Harry's hospital experience
• Our trip to the caravan

I am sure that there are many more topics I would like to discuss but off the top of my head I can't think of them.

I can't find my camara which would be really handy because I would like to take some shots to illustrate the posts.

Statement Review

My ten year old son has a Statement of Educational Needs and is granted 15 hours per week with a one to one assistant. Every term, his Individual Education Plan (IEP) is reviewed by the teacher, the SENCO and myself and this sometimes includes input from outside sources who are involved with him.

Once a year the Statement is reviewed to make sure he is getting everything that he needs.

We have just had his statement review last week and this was quite an important one because it will include his transition into high school in September 2012.

The meeting has been arranged since the first week in September but despite this, his teacher told us he wasn't coming as we arrived because he had an after school welsh class to take, the SENCO had to be excused to go to another meeting half way through and the learning support teacher had not carried out scoring which will be required for the high school.

In addition to this the ICT SEN assessment I requested in the summer still has not been done and looks as though it wont be done until he is in high school.

I feel let down by the school, very let down.

I feel as though they haven't taken my sons situation seriously.

This is the fight I have had with the school since my son started there. First was the struggle for them to take him seriously and not write him off as a naughty boy, then there has been the constant struggle to get the school to understand and cope with him.

Its all very well having inclusion in mainstream schools for children with special needs but it cannot be done on a shoe string budget!

Shocked

I was waiting for my 10 year old son who has autism to come out from his mainstream school. As far as autism is concerned, Harry is on the high end of the spectrum and his main difficulties are speech, language and communication and the latter includes social communication. The subject is very complex and unless you have experienced life with children who have such difficulties you can't appreciate the massive impact it has on every aspect of life not just for them but for the family around them.

I digress......

I am trying to give Harry a little more independence in preparation for High School in 2012 so our agreement is that I wait on the pavement outside of school and he comes to meet me.

Yesterday I was waiting as normal when Ade one of Harrys friends and his mum came up to me in a panic to say that Harry had been beaten up in the cloakroom and was crying.

Like a tigress I leapt out of the car and ran to find him. I regret to say that in my shock I didn't partake in social "niceties" with other mums for which they may think me rude but frankly, I don't care, my priority in life are my children and their welfare.

Harry came to meet me with his teacher Mr Roberts. He was wimpering and clearly in a shocked state. Mr Roberts explained the situation to me clearly and assured me that although the assailant ran off home as soon as a teacher appeared he would be dealt with accordingly on Monday morning, Mr Roberts would not tolerate such behaviour.

Mr priority at that time was to get my son home and quickly so that I could sit him down and cuddle him. As a mum when something like this happens all you want to do is wrap them up in cotton wool and protect them.

Harry drew pictures of his experience for me and was able to talk about what had happened. As he recounted the events I was horrified that 10 years olds could possibly behave in such a way. Harry had gone to collect his belongings from the cloakroom and his assailant grabbed him by the neck and slammed him continuously against the wall before reigning punches and kicks all over him. Harry told me "I didn't know if he would stop".

As soon as somebody shouted that the teacher was coming the coward ran off home leaving my son in a state of shock, hurting and badly shaken.

I expect my children to be kept safe in school and indeed they are under the impression that they are safe in school but this highlights the fact that clearly they are not.

Once I got Harry home, he covered his face with his dressing gown and stayed that way until he was calm which took a long while.

As the evening wore on, I became increasingly angry at what had happened and frustrated at the fact that I have to wait two days before I can vent my anger and concerns.

Harry told me that he is scared to go to school now. He asked if school could be at home until he went to High School.

Can you imagine my frustration now? This boy up until 2 years ago point blank refused to go to school, I had to drag him there, and after school I would have a child in a black mood all evening. To have made a break through that he is happy to go to school these days and then have this situation knock him back is totally unacceptable.

So the plan is on Monday that my husband and I will escort Harry into school and to the safety of the Head Mistresses office and we will be asking for a guarantee for Harrys safety, re-iterating that he has autism, he has special needs and the school are obviously not catering for him. I will be asking that the childs parents are contacted, that the child is taken out of range of contact of my son and he is punished accordingly!

North and South Wales are like Chalk and Cheese

Before I start writing this post let me explain about the title. I am not criticising any part of my country, I am purely making my own observations which to be perfectly honest with you, after my South Wales holiday has been a bit of a shock. The view I have always held of my country is that of unification, as one-ness but it isn't.

I suppose I could compare Wales to a beautiful and amazing diamond.... unique, priceless, beautiful, sought after and if you hold it in different lights it changes........... No matter what the change it remains utterly beautiful and the light can show you hidden aspects.

I live in North Wales, in one of the largest towns in the country - Wrecsam. I actually live in the borough of Wrecsam in a border hamlet called Lavister which is now part of Rossett (Yr Orsedd). Its very agricultural in the North with farms and cattle all around us. Even towards the Llyn Peninsula and Anglesea the story is the same.

Farming is a tough industry and alot of farms have either failed or diversified in order to stay alive. So sadly the North part of Wales has become a mixture of farming and tourism. In fact places such as Abersoch and Llandudno are nick named by us locals as "Little England". Abersoch is a particular eye opener with the amount of range rovers, yahts, boats........... we feel quite poor when we visit in Jason's "truck" in comparison.

The North Wales welsh tend to be insular, and that isn't a criticism, I am a northerner myself but I think it must be the structure of our towns and villages and the fact that everyone *used to know everyone in their town.

The impression I got of the people from the South was warmth, friendliness, a more cosmopolitan feel.They didn't feel as aggressive... Maybe that description is a bit harsh but whenever I have used public facilities in the north, there has been an element of aggression to the point that I can't leave my 10 year old son who is on the autistic spectrum because he usually gets picked on. I know I have only used the LC2 in South Wales but the feel I got from that facility was one of fun.... people were there to relax and have fun..... I felt relaxed and didn't feel the need to be on my son's back all of the time...... Guess what??? he didn't get picked on once!

I expected the South part of Wales to be industrial but I found that it was a mix of the two.... Consider a beach town right next to or part of an industrial and countryside community..... I found that very odd but very attractive.

Having had a hard day at the office........ take your family down to one of the local beaches for a BBQ and some beach fun.

The beaches themselves weren't crowded either as they can be in the North but I suppose that is because North Wales lives on tourism whereas the South doesn't have to.

So.......... I fell in love with South Wales!

* I will cover the town of Wrecsam in another post. I started to describe the town but it became to complicated to include in this post and I felt that it deserved one of its own.

Awareness!

There are so many illnesses, conditions and diseases apart from the one everyone always recognises! The picture above was taken a couple of weeks ago at the Gathering in Prestatyn. Basically it is a weekend of rock and roll. Andy Gray was the guitar tech for Mike Peters and what struck me about him at the Gathering 18 was what such great care he took of Mike, it was beyond what his remit must have been.

Imagine how sad I was to hear that Andy is suffering from a condition called MND. Such a talented and nice guy, its just not fair. His sister Janet has a blog and is raising money and awareness of the condition. You can see the red band I am wearing in support of Andy and his sister and all money goes to MND charity.

Fibromyalgia is another condition I have come across recently with two friends being diagnosed. These friends are the loveliest, kindest people you could ever meet and yet their lives are plagued with constant pain.

Of course a condition which is very close to my heart is Autism...... Speech, Language and Communication Difficulties. Both my sons are on the spectrum but my youngest is more profounding affected. He is what they call a high functioning autistic so to the outside world he looks just like any neuro typical child but his perception of the world is totally different to ours.

I actually did a digital story once with Yale and BBC, a 2 min presentation which highlighted Harrys difficulties. At the official showing, there wasn't a dry eye in the audience.

Harry struggles with life.... everything is affected. He can't cope very well with change, sleeping is a huge problem, also co-ordination difficulties, reading and writing. He is also sensitive to touch and light.

Its hard to explain really how it affects him but my chemo brain has given me a deeper understanding of what it is like to be an autistic person. Imagine you are trying to write a letter, something important but as you are doing that there is loud music being played, flashing lights, people tapping you on the shoulder...... thats the best way to explain what every day normal life is like for an autistic person.

I had Harry's SLT report today and I had to read it twice. Being the eternal optimist I can see improvements in H all of the time, I even find myself thinking " is he REALLY autistic?" but when you read reports such as this it is like having salt rubbed into an open wound. It hurts.

We all love our children and we would walk over hot coals to protect them so can you imagine how I feel reading an official document which highlights all of your sons "failings". This is yet another thing parents of autistic children have to deal with.

I get stares over Harrys behaviour, I get tuts, looks of disgust but also I get the odd kind smile or hand on my shoulder.

Autism is a horrible condition in a world dictated by neuro typical people. I adore my son, he is autistic and I love him in spite of that, in fact I love him for that fact. Little things, little breakthroughs give so much more pleasure. Things like.... being able to eat mixed up food, being able to describe things in detail, using a knife and fork to eat...... simple things that parents take for granted.

I never had the normal toddlers.... my children couldn't speak or communicate, I had to deal with temper tantrums and frustration which was distressing for both me and my boys. So now, when I engage with a toddler, I never ever cease to enjoy their babble, their chat and interaction because that was something I was robbed of.

So all I ask is for tolerance of people.... You see that face in the crowd but you don't know their story. Don't brush past, give a smile and give your understanding.

On to Day 3 of my Diet

I started back on my Weight Watchers programme on Friday and so far so good...... To be honest with you I have eaten so much rubbish and drank so much alcohol, the thought of anything like that turns my stomach and today I woke up with more energy than in a long time. I can't wait to get back on the fitness regime tomorrow.

Jason is off work Monday and Tuesday so I am going to fit in a run on Monday, Wednesday and Friday together with some riding, the first in ages since the snow and ice.

Cola's former owner came down to see him today and took him out on a short ride. She didn't know the area so I walked with her, I loved that bit of exercise! I know that my boy has lost weight because his girth is almost too big for him now so that gives me heart.

Luckily my eldest son is getting into taking the dogs for a walk, I am unable to motivate youngest son and its so stressful going out with him that it puts me off to be honest with you. Mind you this morning I prepared him for the visit and what we would be doing and fair play there were no melt downs, because he knew exactly what we had planned.

I will phone the doctors surgery on Tuesday to see if they have had the results of my scan and make an appointment to discuss it and related issues. I was hoping to be finished with doctors and hospitals now that my herceptin is done and dusted but I can't complain, at least they are keeping an eye on me. Good news was that my ovaries were clear and I am thinking that chemotherapy has sorted out my polycycstic ovaries which is a relief in one way....

I am Back!

I havent been around much lately because life is so hectic. Now that I am back in the driving seat I am busy with caring for my special needs son and fighting his corner. I finished herceptin about a month ago and I am still waiting for the side effects to leave me. I desperately want my swollen fingers to go down so that I can wear my wedding rings again. However, its nice that I am wearing rings which are very dear to me, my Nains (grandmothers) and my great auntie Lizzies engagement ring.

I have been busy going to concerts, running and generally enjoying my life. I am still fighting with my weight but Tamoxifen isnt the best drug to lose weight on!

My running is going well.... only a few more weeks until my race! If you are able to sponsor me please visit my Just Giving page www.justgiving.com/sara-williams1

Blogging for Boobs - Breast Cancer Awareness!

I have placed the photos in no particular order, cancer doesn't leave order in your life but these photographs reflect 20 months of breast cancer treatment.


I had everything to live for at the start of 2008. A successful mobile dog grooming business, two gorgeous sons, a niceish home and I had just finished therapy following some difficult periods in my life: family break up, death of my big brother at 25, breakup of a 7 year relationship, infertility, having my sons diagnosed with autism........ Life was starting to pick up.

One day, I was about to start grooming a little Bichon Frise called Ruby. I was chatting to her owner and she told me something which caused me to put my left hand to my chest to say "how awful", as I did that I felt a lump.

I went hot, cold, numb all in the space of a few seconds and during that time a whole stream of thoughts plundered through my head. Do I continue with the dog? Do I go home? The Doctors surgery is closed theres nothing I can do until the morning? Is it really there? How do I tell my husband? In the end I decided to carry on as normal.

Within two weeks I received my hospital appointment. Initial consultation was with a registrar and after that I had a mammogram and ultrasound scan. I returned to the tiny consultation room which was filled with the registrar, the consultant, the nurse and a MacMillan nurse so I knew it wasn't good. This was confirmed following 2 attempts to get a sample from the lump failed by the registrar and the consultant swept her away and I nearly hit the roof!

My diagnosis was confirmed 5 days later. Stage 3 HER2 positive, hormone sensitive breast cancer. The lump was the size of a 10 pence piece and the cancer was the aggressive type. My consultant told me that because I was young (nice compliment to receive) he was going to hit me with everything they had.

On Friday 13th February 2009 I had a lumpectomy. I wasn't sure at that point whether I would require further surgery because of the size of the lump but luckily, having G cups is an advantage and the lump was removed with good clearance and the cancer had not spread to my lymph nodes so only 3 were removed.

Following that I received 12 rounds of chemotherapy from March to October and 15 rounds of radiotherapy. Following that 18 rounds of Herceptin over a year.

2nd October 2010 - My scar is it is today 20 months after surgery

Slightly better picture of my 20 month old scar. It healed badly because of a massive haematoma

Friends and family kept me going through treatment

December 2009, my hair had been growing for 4 months and I had just had my first hair cut to take the dead ends off

When it started to grow back I was like a Kiwi

Not a good look! No hair, no eyebrows, no eye lashes and a swollen face due to the drugs and steroids

20 Months on and I still can't wear my wedding ring

Once it starts to grow it comes through quite quickly

Not such a good picture but trying to show the damage the canulas do

There is so much I would like to say about my experience, so much.


The one thing that nobody prepared me for was how invalided I would be following my treatment. I expected to be back to normal once my chemo was over but I wasn't and this was a bit of a shock. I have been left with side effects which I am learning to deal with.

• Aching hands due to neuropathy caused by chemo and damaged veins due to over 40 canulisations
• Aching back due to hormonal changes and the drug herceptin
• Swollen fingers and feet due to the drugs I am receiving
• Poor digestive system for which I am medicated
• Fatigue which I battle through
• Chemo brain: Inability to multi task, concentrate, I lose words etc. Memory is not good

Before cancer I was always active and fit so once my treatment was over I couldnt believe how hard it was to regain my fitness. I gained almost 2 stone in weight due to cancer treatment and the drugs they pump you up with. My face and body became swollen.

However: I have lost my "cancer" weight - its been a long hard battle to do so, taking me a year because I am still fighting the effects of Herceptin and Tamoxifen which make it hard to lose weight. My hair is growing back, thick and the same colour as before and yesterday ............ I ran 3 miles - my furthest since I had cancer.


In December 2010 I am running my first 10K - something I was due to do just before I was diagnosed. For me, this will be an emotional event because although my running time is still compromised, I will do that race, I will cross the line and I will stick the V's up to cancer. I am raising money for the Love Hope Strength Cancer Foundation because the co-founders of the charity have done so much for me to get me through my battle. Its my way of saying thanks!


If you are just facing the start of the fight, here are some tips;

• Stay positive and keep smiling - cancer feeds on negative emotion
• When you go for treatment, dress up and put your favourite clothes on, it helps you get through the ordeal
• Don't be afraid to question your treatment, ask for ways that the treatment can be made easier for you. For example: if oral anti-sickness tablets pre treatment aren't working, ask for them IV, ask for emula cream prior to canulisation or ask them to use freeze spray
• When you finish treatment, don't expect too much of yourself. I felt totally wiped out for at least 6 months after chemo ended and even now, 12 months on I have dips
• Allow yourself a down day but dont dwell on it. Accept your down day, go with the flow but make sure you are up the next day - remember, cancers best friend is grief, stress etc
• Try not to feel guilty when other fighters fall. I have experienced survivors guilt and its natural but try to turn it around to carrying on your fight in their honour
• You have been given a second chance at life - GO AHEAD AND GRAB IT, LOVE AND LIVE EACH DAY FOR WHATEVER IT IS, YESTERDAY IS HISTORY, TOMORROW IS A MYSTERY - TODAY IS THE DAY!

Training

My training for the Tatton Yule Yomp is going well. I am up to 2 1/2 miles in a single run and hoping to increase it little by little each week. I am using my bike to warm up and check out the route and distance for the run then using it for a gentle cool down. All in all I am getting a pretty good work out.

My running time isn't good at all, I am currently running a 13 minute mile but at the end of the day, for me, the race isn't about getting a personal best or by crossing the finish line first. Its about getting back to where I started from before cancer, getting fit and raising a lot of money for the Love Hope Strength Cancer Foundation.

At the moment, the total raised online and offline stands at approximately £260. If you are reading this and would like to support me you can do so by visiting my Just Giving page. I have had some little business cards made with my details on so over the next few weeks I am hoping to distribute them and put a splurge in our village magazine, possibly even in the newspaper - we shall see!

My weight is peeling off me at a painfully slow rate but I am not a quitter, once I have set myself a challenge I will get there! I have at least 14lbs to lose but 20 would take me back to my old weight.

I am enjoying being active again, its something you take for granted when you are fit and well but when illness strikes it knocks your body for six. I have always lived my life at 100mph but now I dont want to lose a second because it is so precious to me.

I am a bit fed up with schools and paediatricians at the moment!

Some incidents in my sons mainstream school have left me frustrated. Not being a person to let any injustice be done, I have expidited the matter and can let you know that I will become public enemy number 1. I am fed up with having to wait around for assessments and tests, it seems to take forever. At the end of the day my son is in year 5 and has the level of a reception/year 1 pupil when it comes to reading and writing, it is such a worry.

My older son is plagued with allergies. Last week he had a serious allergic reaction to something which left him covered in a painful and itchy rash. This spread to his face and airways so we spent a few hours in A&E making sure he was safe. I have had two appointments now with the paediatric team and I feel as though they are putting me on some sort of "holding" process. I need to know what my son is allergic to so that I can make his life more comfortable but they are not willing to do the tests.

Sorry about all of the moaning when my blog started off so positively!

Chemo Brain

I changed from Cancer Aint Gonna Beat Me to Sara's Fight Back because I wanted to move away from cancer, move my life forward. However, there are some aspects of cancer that aren't quite so easy to leave behind and I feel that I must talk about them in order to spread awareness and nurture understanding.

When I finished, what I call, the radical part of my treatment in October 2009, I really thought that I had cracked it. I had been operated on, poisened and burned and life would resume as normal.

How wrong I was.

My first realisation came early in the year of 2010 when I finally realised and accepted that I was not as physically strong as I had previously been. It was a shock I can tell you because I expected to pick up where I left off! I accepted the situation, grieved a little bit and moved on.

Today, my second realisation hit me. Chemo Brain! Yes, I am suffering with chemo brain or cognitive disfunction. It basically means that I have word retrieval difficulties, word/name memory difficulties, sequencing and feel confused alot. I can no longer multi task as I used to, my short term memory is shocking....

Today I hit meltdown. I had a good cry then went off for a run to clear my head and get rid of the negative energies in my body. After 15 minutes of a 45 minute run I realised that my chemo brain and subsequent melt down this morning has given me an understanding of what it is like to have autism, or cognitive difficulties. I then felt a bit guilty because I am in a situation that I can rest my brain but children with ASD are unable to do this. When my son has his next melt down, I will know exactly how he is feeling and I am better able to deal with him.

30 minutes into my 45 minute run, my brain started to work again and my thoughts became less random and by the end of the run I was laughing and picking the seeds off the long grass as I ran past.

My head is still fragile, it won't take much for me to hit melt down again but I can grow from today now that I have accepted my situation and put in place strategies for us all to cope as a cognitive disfunctional family.

Autism

Today we went to our sons IEP review at school which is where we discuss the progress and agree new targets.

I am so proud of my son because we are now discussing literacy and academics rather than behaviour, speech, language and communication. He has made so much progress and his self esteem has been raised so I am hoping that the literacy will start to come.

I went to Glyndwr University this evening to see an Autistic adult give a talk. Well, what an amazing talk it was.... witty, humerous and enlightening. I have a better understanding of what my boys are going through, how they see life and why they do the things they do. Best of all, it has given me hope that my boys will become well rounded adults.

I could write pages and pages on my life with autistic children but I won't because words cannot adequately describe what life is like.

All I can say is that my life is so much better for having my autistic children, it has made me a stronger and better person and I enjoy dealing with their little ways.

Autism is such a broad spectrum..... well..... thats why they call it a spectrum. No one ASD person is the same or affected by the same things. My children do have sensory issues..... light, sound, taste, texture etc, we think H may have dyslexia, they have compulsions and OCD habits but we live our life around them and deal with them. It is hard having autistic children, nobody can ever understand just how hard it is for us as parents and them as human beings living in this crazy world.

There is hope for my boys, and now that the condition is being discussed, and people are becoming more aware of it, tolerance is growing.

One thing the condition has taught me is that I don't give a fig what other people think of me or my children...... I believe in me and most of all I believe in them, nothing else matters!

Monkeys on my Back

When I run, I seem to generate great ideas for my blog. Ideas that I would like to share with people. Yesterday I had a lovely run. The wind was blowing and although it was hot it was a great temperature for running. While I was out I listened to my MP3 of all the songs which have got me through my life.


I realised that all of my life I have had "Monkeys on my Back". These monkeys aren't good, they are not nice, they hung onto me for all their worth but I shook them off. The monkeys come in all shapes and forms and their names are;

Depression
Infertility
Annorexia
Low Self Esteem
Autism
Cancer

The only monkey I have been able to get rid of completely is Infertility! Yes, I got rid of you because I have my two wonderful sons who I had to fight hard for and wait many years for.

The other monkeys have been shaken off but they are always there in the shadows, lurking with evil intent, waiting for a chink of weakness to appear in my soul, waiting for negativity to slip into my life so that they can jump on again for the ride.

The only monkey I am desperately afraid of is Cancer because I have no control over him. If he decides to get on my back again I can only hope that physically I have the strength to kick his butt again. The other ones are relatively easy to keep at bay because as long as I stay strong they will remain in the shadows.

Do you have monkeys on your back?

Summer Ramblings

Life is good!


I hate the way I look at the moment... my body is not mine and my hair is not mine....


However, I am getting back into shape slowly. My energy levels are much higher than they were so that I can push myself through the pain of back ache and do all of the things I enjoy. My running is going really well as is my swimming and aqua jogging. I love riding Cola but the only down side about that is my back hurts so much when I ride.


My hair is growing slowly too. I am striving for a short, chin length bob then after that, maybe a bit longer. It will be nice to feel feminine again.


The weight is coming off slowly but I am determined to get there. I am within a healthy BMI range now which takes the pressure off me a little. My fingers and toes are still swollen and sadly, I still can't wear my wedding, engagement or eternity rings.


I am enjoying life with a passion now. I have been given a second chance and I recognise that.


Summer is coming and with that brings all sorts of changes in the lives of my sons. Joe will be finishing at primary school and moving on to High School, we are attending his last ever primary school sports day tomorrow....


Harry will be moving up to year 5.... I am wondering how he will cope with the change and the fact that Joe won't be there.... I know he is worried because he keeps asking me questions about it, seeking confirmation.


I wish Harry could remain with his existing class teacher because she has worked wonders with him this year. His self esteem has gone up and with that so to has his reading and writing. He still has a long way to go but he is coping much better with life these days.

Busy! Busy! Busy!

This week has been extremely busy for me. Monday was a bank holiday so the children were off school, Tuesday was a good day for me because I had time to walk the dogs, see to Cola and ride him but Wednesday and Thursday have been taken up with hospital appointments.

Wednesday I had an appointment with the Breast Cancer surgical team and the good news is that everything is ok, but I knew that anyhow!

Today I had an appointment with the Autistic team at Wrexham Hospital with regard to my youngest son. His assessment has been fine tuned to better fit his existing needs and the outcome of our meeting was that Dr D is going to refer H to the ADHD team for assessment, he is going to research OT or Physio and give me copies of his report so that I can give it to the relevant bodies.

I contacted the three major parties in relation to the NAS campaign and the Liberal Democrats were the only party to respond which is quite sad.

I am really frustrated with the entire system for children with special needs. I knew that there was a problem with my son by the age of 2 and yet there was no support for me at all. The Health Visitor was as much use as a chocolate fire guard and never once followed up on us despite referring H for speech therapy and despite the fact that I copied her in on all of the reports and assessments I had done. She was a complete waste of space and I am angry that such an incompetant person can be in such a position being paid good wages. She has let me, my son and my family down.

When H was referred to speech therapy, luckily for us, not many children turned up for the group and the therapist quickly identified that there was something more of an issue with my son than just speech. She fine tuned his speech sessions and turned them into a language assessment. This was good for us because H does not concentrate very well and the "normal" 3/4hr assessment would not have worked. The result of this assessment was that H needed one to one support in the classroom........ He was 4! It took me until he was 7 1/2 to get him one to one support, until he was 8 to get him outreach language therapy and now his language is up to speed, they have identified that his reading age is very young and this is a huge problem seeing as how he only has 2 more years left in primary education.

My gripe is.....

WHY? didn't I get more support

WHY? did I have to rely on chance to get a language assessment

WHY? did I have to be grateful to luck on knowing a doctor who carried out an autistic assessment

WHY? did I have to have depression and therapy before the autistic team got involved with us

WHY? can't the education and health service work together to provide a more complete service

WHY? does each problem have to be tackled seperately instead of as a whole so H has problems with fine and gross motor skills, speech language and communication, reading and writing

WHY? are the waiting lists so long for each source of help

So with that off my chest I can now return to the joys of parenting a child with autism.