I will come back to haunt you - Writing Workshop

I was hot, yes I know I was in a hospital and they are always hot, but normally the dressings clinic is OK. 

Yes the window is open, but I know that I am a little off, just not right, I can not put my finger in it and it is about to get worse.

The nurse has returned with all the things she needs to remove these stitches and I will be so glad to see them go.  No blue thread making  my chest look like a zip, no more pulling and pressure as the skin tightens around them.  I am so happy to see them go, the boys less so, there is something about the gruesomeness of it all that makes them love them so.

Anyway, I take a deep breath and hold on tight to MadDad's hand, "you might feel slightly nauseous" says the lovely nurse, I just press her to get it all over and done with.  I don't notice the pain to be honest, I am too busy concentrating on the drip of perspiration that is going to fall off my nose. 

"All done" she tells us chirpily, "you have healed pretty well, apart from one spot on the right, I am just going to get some dressings for it" and off she pops behind the curtain.  The curtain fabric that I have become so familiar with, the white one showing local landmarks, The Transporter Bridge, The Tees Barrage and High Force.

"I don't feel right" I say quietly to MadDad, "I am so hot and look my chest is so, so red".  "Lets ask to see a doctor, one of the ones that know you".  As soon as the nurse returns, I insist that I need to see my Consultant.  "He is in surgery" she tells me, so arranges for me to see his SHO Tom.  Tom is great and listens to my concerns and notes that I am a little flushed (normally I am as pale as a vamp) and also yes my chest area is slightly red.  He draws a line around the red area and disappears leaving me and MadDad behind that curtain again.

Cheerfully he pops his head back from the said curtain "I am arranging to have you admitted for observation overnight, they are just sorting you a bed".  I look at my watch it is 2pm, so I agree with MadDad that he will pop home and get me a bag and arrange for the boys to  be looked after longer and then return as soon as he can, whilst I grab my clothes, pop them on and make a hasty exit to the dressings clinic waiting area.

I grab a magazine and start to read, I am still hot, although I am getting a nice draft from the fan.  I take off my coat and scarf (I haven't removed a scarf since my mastectomy, it is a shield, it makes me feel as though I have breasts).  I am slowly getting hotter and hotter.  I ask the receptionist for a glass of water, she take one look at me and calls a nurse over.

It is 4pm and they have found me a bed, the nurse comes and asks me to follow her, I hear her voice, but my legs wont do as I tell them, I stumble.  I keep trying to get up and walk after her, but I cant and neither can I find my voice.  I see MadDad arrive in the corridor and he sees me and drops the bag and come over and gets me up.  Together we stumble to a bed.  I hear him talking to me, but I can not concentrate on the words.

MrsMad "wake up, you must wake up", "We need to find a vein now", "her temperate is 40.7 degrees, we need to strip her" and then I feel pain, pain like never before, they are holding me down and trying to get blood from my groin, I can hear a woman screaming in what seems like the next ward, but no that noise, that scream, it is me.  I feel so detached until I hear the words,"her kidneys are failing, her organs are shutting down, I think we are dealing with Sepsis"  Sepsis, that one word does it, it drags me from behind the curtain back in to the real world.  My dad died of Sepsis, I will not succumb to the same fate as my father.  What about Maxi's first nativity.

I hear myself speak, before I even say the words "Do not let me die, please do not let me die, I want to see my children grow up, I will haunt you forever if you let me die" and that is all I have to say on the subject and that is pretty much all I remember of that night.  The night when they opened all the windows on the ward (it was a chilly March night), had fans blowing on me, gave me the domestos of antibiotics, updated MadDad hourly of my progress (he had to return to the boys).

I don't remember my wounds splitting, or the discussions regarding surgery (I apparently begged them not to operate again, to leave it till my husband was with me), the waiting for an Intensive Care Bed.  That night I came the closest I have ever come to not surviving my ordeal, but my the morning I had started to get better.

I wish I could say it was as simple as that, but it really wasn't.  The sepsis left more scars, emotionally and physically that all the previous surgeries put together.  I spent 2 more weeks in hospital on iv antibiotics with a stoma bag over each wound.  The bags were replaced daily  and that was a trauma in itself, but the worst thing was watching my children suffer.  Maxi behaved impeccably and they were even allowed to remain in my room with me during meal session, but mini, poor mini.

He thought he had me back home, we hadn't expected Mummy to be whipped back in to hospital and hadn't prepared him for it and all he wanted was Mummy.  He withdrew, became clingy, stopped eating and sleeping.  Controlling the only aspects of his life that he could.  It was heartbreaking.

It has been a long and hard uphill struggle at times, but I am alive, thanks to the quick thinking of a great team of Doctors and Nurses and also my wonderful family.  With them by my side I can conquer anything.  Hard to think that this was just under a year ago,  We have come such a long way since then.

We may not have it all together, but together we have it all.

This post was inspired by promt 2 - Write about a time when you felt, or you felt someone you loved, was in real danger.

Writing Workshop - What were you doing this time last year

 

It is karma that this prompt came up on this weeks workshop, as I have been discussing this with my wonderful friend Wendy (my homestart lady) today. We took the boys for a good old run out and about yesterday afternoon in the woodlands near home and stopped for a well needed pot of tea and scone, whilst the boys climbed trees outside the cafe.

It is nearly one year since my first breast surgery. I was frantically trying to fit everything in that I needed to. I have booked 6 weeks of Tesco Deliveries, a book of all the things the boys liked, ate, did and schedules. But specifically the one thing I was doing a year ago was writing letters.

I wrote 4 letters and 3, I will share with you, the one I wrote to MadDad is not and never will be for public consumption, but I wrote one each to the boys and one explaining why i was doing what I was.

Writing those letters was the hardest thing I had ever had to do, but I was so unsure of the outcome of the surgery and so scare of dying I just needed the boys to have something to hold on to if the worst happened.

Letter One - Why I am doing this

BRACA and its implications to us all as a family

I wanted to explain to you both why I am undergoing the surgeries I am and how it can or could impact on our lives, both individually and as a family.

History

My Aunty C (Grandma’s sister) died of cancer when I was younger and it was a really hard time. My cousins were in their teens and it was really hard on them. Then Aunty T contracted Primary Peritoneal cancer, which thankfully at this time is in remission. Whilst she was undergoing her treatment a blood sample was taken for genetic testing due to her older sister having died of cancer and also the link of peritoneal cancer to both breast and ovarian cancer.

We all were over the moon when she was given the news that she was in remission and that the treatment had worked, but this was tempered with the news that she had a “spelling mistake” in the gene that is responsible for Breast and Ovarian cancer. Grandma was offered a test for the same genetic fault and she too was found to be positive and had her ovaries removed.

As Grandma was positive, I too was offered a blood and DNA test to see if I too carried the spelling mistake. Your daddy and I discussed the implications and we decided to have the test in January 2008. 6 weeks later I was given the news I expected which was that I too was positive.

We met with a number of doctors and consultants and researched lots and lots and finally after lots of soul searching made the decision to have prophylactic surgery.

All the research I had done indicated that removal of the ovaries before turning 35 was most beneficial in reducing the risk of both ovarian and breast cancer, so in July 2008 I underwent surgery to remove my ovaries and fallopian tubes.

I made a super recovery, I was driving two days later and went swimming with both you boys the week later.

We also discussed the prospect of a double mastectomy and reconstruction with an oncologist and plastic surgeon. There were a number of reasons that I chose to have this operation, even though it is quite a major one.

· Breast cancer is very hard to diagnose before 40 even with annual mammograms or MRI’s as the breast tissue is denser the younger you are.

· My risk of breast cancer is an 85% lifetime risk; a mastectomy reduces it to about 6%

· It is harder to diagnose BC correctly on larger breasted ladies.

So based on these facts and after talking to people who have had breast cancer and treatment for it, we decided to go ahead with the operation and it is scheduled for 27 February 2009.

There is a risk that I still may get an associated cancer and so will need to remain vigilant, but at least this way I am not living with a ticking time bomb.

The Future

Due to the operation I am having, I will need further operations in the future, but these will be a lot smaller and less risky.

One of the things that does upset me is that there is also a possibility that you both carry the “spelling mistake” or mutation too and this will have implications in your health and also the health of any children you may go on to have. You will both be offered the test at 16 and can make the decision yourself if you want to find out.

I hope that the way medicine is moving forward that the gene is now isolated that it can be repaired and that you will not even need to make any decision about your or future children’s health.

I am doing this so that we can all have a future as a family, so that I can watch you grow, develop and change without the worry that I may not be around much longer.

Maxi Mads Letter

Dearest Maxi

I so hope that you do not have to read this letter, but if you are it means that something terrible has happened.

I wanted you to know just how much you mean to me and how much I love you and your brother and daddy too.

You bring me such joy and amazement everyday and sometimes terrify me with your ability to remember the littlest thing. You always know what to say to make me smile and are the most amazing son a mother could have asked for.

I had a challenging pregnancy with you and then an eventful birth followed. You were a beautiful baby. I and your daddy were so sure that we would think you looked wonderful no matter what and we were right, but you defiantly prove the rule that the sum of the whole is greater than the two parts.

Sleep was not something you blessed me and daddy with and you gave us quite a scare when at 4 months old you developed breathing difficulties and have to be hospitalised and helped to breath. You were a fighter and pulled through, only to go downhill again a month later (the week before your baptism), but again you made a fantastic recover and got out of hospital the night before we travelled back to R for your joint Christening with V.

Your little brother Mini was born when you were 15 months old and all of a sudden you went from being an only child to being a big brother and you were and still do look after “your baby” and “Lee Lee” as you used to call him.

You have a natural ability for mathematics and puzzles and often can do them faster than me (not that I am any good at them).

I have always wanted for you to be happy and to enjoy life, to not be too burdened with the worries before your time. I want you to have a happy and carefree childhood and have enjoyed spending time on the beach with you and also taking you swimming on a weekly basis, in fact you are and always have been my water baby. You say you would like to be a “surfer dude” and will have all the rad moves.

You can be quite challenging, but that it down to the fact that you are bright as a button and if not kept occupied then can be very mischievous. Infact once you took all the glitter out of the craft cupboard and decorated the house.

You love your food and I love cooking for you and we have had great fun growing our own veg and fruit. We have a messy, but happy time in the kitchen baking and cooking together. We like to make muffins and pizza together and we love to all eat at the table as a family.

You can use a computer better than me and can beat all of us on the wii at MarioKart.

I have been lucky to have been able to remain off work and spend lots of time with you, watching you grow and develop, but also influencing (hopefully positively) the person that you are going to be.

I would like you to remember that you were born of love and that I love you more than words can express. You have brought me so much joy and laughter. I am sure that you will grow up to be a fine man.

Remember to keep helping round the house, learn how to iron and cook and you will be a real catch. If you can be half the man your daddy is then I will be happy.

e have wanted to instil in you manners, morals and a sense of kindness and compassion. I would like you to take a look at the world and look for the best in it and in people and try to stay positive, even when times may be hard.

I would like you to try and develop a deep and constant friendship with your brother, family is important. It was the reason we return to the North East from Reading where you were born. So please keep in touch with all of them.

I hope the rest of your life is everything you want it to be. Hard things can and will happen and I know you will find ways to survive, be strong and learn. Daddy and Mini will be great people to grow up with, lean on, rely on (and argue with sometimes!). I hope you will have a group of special friends to trust and eventually someone special to love. I hope you find work that satisfies and nourishes you. I hope your dreams come true – whatever they may be. And on the special days of your life, remember me and know that I am so proud of you and I am surrounding you with love.

It has been wonderful to share these years with you. I'm so sorry I couldn't stay. I'd have done anything to be able to. My love for you is so strong – nothing can break it, certainly not something as insignificant as death. My love will surround you, protect you, nourish you and support all the days of your life.

Mini's Letter

Dearest Mini

I so hope that you do not have to read this letter, but if you are it means that something terrible has happened.

I wanted you to know just how much you mean to me and how much I love you and your brother and daddy too.

You are a light in the dark sky, a fantastic son and a wonderful brother too. You made our family complete and have always enjoyed being my baby and had a special smile that you only use for me. When you were tiny you would only settle for me and secretly it was nice, especially as Maxi is such a daddy’s boy.

You were a very much planned for a wanted addition. We enjoyed Maxi so much that we wanted another child as soon as we could. We were blessed to have you so soon after trying.

You were gorgeous, just like your big brother, but you had a wonderful head of dark hair just like me. Again you were not a great sleeper initially, but I used to look at you and your big brown eyes and everything would be all right

You were and are such a placid little man, fitting right into our family, as though you had always been there. You were a proper little mimic and it seems as though you were talking from 6 months old and have a fantastic musical ability. You love to dance and you love The Wiggles more than you love me – or so you say. You love playing on your guitar and being a rock star.

As you grow, you seem to look more and more like your grandpa B and my one regret is that he has been unable to meet both you boys.

You have the ability to make even the sternest person smile and seen to bring happiness to everyone.

You have been blighted with my temper and are a stubborn as a mule refusing to back down and if you don’t want to do something, then boy do we all know.

You may not have wanted to sleep early on, but you love your bed and sleep now and cuddle all your bears in bed – there is Bear, Bear Bear, Spare Bear (to wash against the other), Moon Bear and Red Bear who all have to go to bed with you and you take two on car journeys too.

You love to colour and read books, you like to tell me the story, in addition to having them read for you. Your imagination is vast and filled with a childish innocence. You have great fun at toddlers when it is sticking and gluing. In fact you are filled with a wonderful creativity. You love watching the moon on a night.

I would like you to remember that you were born of love and that I love you more than words can express. You have brought me so much joy and laughter. I am sure that you will grow up to be a fine man.

I like to think that I have been blessed to have been able to spend the precious early years of your life with you and hope that I have managed make a positive impact on you and shape the person that you are going to be. I hope that you have a strong sense of belonging and that you always remember how much I love you.

Remember to keep helping round the house, learn how to iron and cook and you will be a real catch. If you can be half the man your daddy is then I will be happy.

We have wanted to instil in you manners, morals and a sense of kindness and compassion. I would like you to take a look at the world and look for the best in it and in people and try to stay positive, even when times may be hard.

I would like you to try and develop a deep and constant friendship with your brother, family is important. It was the reason we return to the North East from Reading before you were born. So please keep in touch with all of them.

I hope the rest of your life is everything you want it to be. Hard things can and will happen and I know you will find ways to survive, be strong and learn. Daddy and Maxi will be great people to grow up with, lean on, rely on (and argue with sometimes!). I hope you will have a group of special friends to trust and eventually someone special to love. I hope you find work that satisfies and nourishes you. I hope your dreams come true – whatever they may be. And on the special days of your life, remember me and know that I am so proud of you and I am surrounding you with love.

It has been wonderful to share these years with you. I'm so sorry I couldn't stay. I'd have done anything to be able to. My love for you is so strong – nothing can break it, certainly not something as insignificant as death. My love will surround you, protect you, nourish you and support all the days of your life.

All that Remains

White on white, raised and hard

So obviously foreign in their origin

Not flowing, not organic

Just Jagged and sharp

Like quiet footsteps on a hard floor

Pattering against the soft smooth skin

puckered, raw and taught 

Alien in the lunar landscape

gripping pain, prevents rest and sleep

no amount of rubbing can realise me

I press against my muscles with my fingers

Too tense they refuse to give

electric currants pulse through the wires

still no release from the incessant pull

warm swimming feeling from opiates in mind

pain penetrates all options

I sink in to the deep warm water

hoping for some realise

Deeper holding my breath

stifling the moans from ever increasing pain

The house stands quiet

the only noise the gentle fizzing of the refrigerator

But in my ears buzzes the throb of unyielding pain

Muscles refusing to give

The clock ticks in my mind

1.20am, I hear gentle snoring

not mine

no fear, for seep will come I tell myself

3.44am, still no release

I am in its grip, the iron fist

to apprehensive to make a sound

halting the groan in my throat

My family sleep soundly

I will not wake them

They have been through so much will me

This I must cope with on my own

I focus all my energy on resisting the pain

try to relax, to resist

but still it is there

never ceasing

Even though my family surround me

I am in solitude with my pain

Soon the sun will rise

but the pain wont dim

A smile I will put on my face

A spring in my step

to greet the day with my boys

but ultimately pain is all that remains

It is so hard to put in to words the pain that I feel, it is not constant and ever present, thankfully it comes and go.  Mainly coming on a night in my shoulders, a terrible unrelenting pain.  When it comes it is hard to find anything that really eases it, other than the warm hands of my wonderful husband, but I can not and will not wake him selfishly, especially when he is so tired after a hard week at work and home.

So on nights like tonight.  I take my pain killers and try to sleep, when it doesn't come then it is the tens machine and a bath,  some nights it works, others it leaves me desolate and alone.  Tonight is one of those nights.  I have tried reading, warm milk, lavender, heat on the area, but there is no relief to be found, so I will wait for the dawn and hope the day brings better things.

Please don't call me brave.

Please don't call me brave, please don't tell me I have done the brave thing.  What I have done was the easy option, the only option I felt open to me.  It was Hobson's choice.  How could I live knowing the risk I had and not worry with every passing moment that a cancer was growing inside me.  No I took the easy way out.

Please don't call me brave.  I have never had to tell my children, my husband, my mother or my friends that I have cancer.  I have never had to make them feel that everything is going to be OK, when actually I want them to be positive and hold me and tell me we will fight this together.

Please don't call me brave.  I have never been put under a general anaesthetic not knowing how much breast I will have when I wake up, or the uncertainty that they cancer has spread to my lymph nodes.  I will never have the wait for pathology results to come through, whilst I try and get my head around what is left of me and why me of all people.

Please don't call me brave.  I have never had the chemotherapy, the drugs which are toxic and poisonous, which are delivered in a blue bag and slowly take away all my hair, my ability to sleep, to eat and to want to open my eyes on a morning.

Please don't call me brave.  I don't have a tattoo, so that the radiotherapy could be administered to the right stop each time I go to the hospital.  I don't have the lasting reminder of yet another treatment to rid my body of cancer.

Please don't call me brave, I don't have to wear a hat or a scarf to cover my bald head.  I don't worry that my children will cry when they see me, or that strangers will automatically know I am a cancer victim.  I don't have to live with peoples sympathy.

Please don't call me brave.  I don't have to have tamoxifen on  regular basis to try and ensure that the cancer does not return.  I do not have to ensure the regular visits to the cancer ward.  The side effects of the drug that is supposed to be helping my body.

Please don't call me brave.  I do not have to be cancer free for five years before I can say that I am officially cancer free or in remission.  I don't have to worry every time I shower if there is another lump in my other breast, if my life is slipping through my fingers like sand.

Please don't call me brave.  I am not looking at my children wondering if this is the last time I will feel their skin on mine, smell their delicious smell or stroke their wonderful hair.  I do not close my eyes at night wondering if they will open again.

Please don't call me brave.

This post was written for the weekly writing workshop at Sleep is for the week and was inspired by prompt 2 - What do people always wrongly assume about you? 

Genetics - Would you want to know?

Geriatric Mummy is in the very unfortunate circumstances of watching her beloved Father go rapidly downhill with early onset dementia and she has asked what other people would do in her situation.  I decided to do a post, rather than a comment, as it would be rather long, as this is a subject close to my heart.

I have a faulty gene, technically they call it a spelling mistake in the DNA and in mine and my family's case the issue is with the BRCA 1 gene, which for me due to my family history means that I had an 80% lifetime risk of breast cancer and a 60% lifetime risk of ovarian cancer.  It also means that I am more susceptible to a number of other cancers too.

Now to put this in to perspective, genetic breast cancer accounts for approximately 5% of the cases of breast cancer, so it is a relatively small amount and pretty unusually to get the positive result for the spelling mistake.

The reason I came to find out was down to my wonderful Aunt T, she was diagnosed with a very rare type of cancer, primary peritoneal cancer and during her treatment she was treated for a genetic spelling mistake, mainly due to my other Aunt dying from cancer and the history of cancer on my maternal side of the family.  We all concentrated on my Aunts recovery and through nothing of the results not coming back, so that when they did informing her of the genetic issues we were all floored.

Initially the NHS offered a genetic test to my Aunts remaining siblings, her daughters and my deceased Aunts children.  My mum chose to have the test, even though she is the oldest in the family.  She was diagnosed as carrying the spelling mistake too, which meant that the test was opened up to me and my brother.

MadDad and I received counselling from Macmillan even before we made the decision whether or not to have the test.  We were really lucky in the care we received and we were also both of the same opinion, that finding out if I carried the spelling mistake would enable us to take proactive actions against any cancers.

In all honesty I thought that I would be fine and to find out otherwise was a real punch in the solar plexus, but we decided that we would research all the options open to me and started meeting with consultants, cancer survivors, woman who had undergone mastectomies, nurses and anyone we could really.

I had a mammogram, an MRI, a colonoscopy, a gasgoscopy and an ultrasound before we had come to any conclusion about what we would do. Initially I decided to have my ovaries and fallopian tubes removed.  There were distinct advantages to having this operation prior to turning 35, both for the reduction in risk of ovarian cancer and also the fact that the changes in my hormones due to the operation would also reduce the breast cancer risk marginally.

I underwent this initially operation in July 2008 when Maxi was 3 and Mini was 2.  We both yearned for a larger family but decided on balance that it would be better to concentrate on the two we have rather than risk having anymore and subsequently developing ovarian cancer, especially as it is very hard to diagnose.

I was in hospital for one night, back driving the following day and swimming 4 days later.  It was a really easy recovery and I was very lucky indeed.

We were also discussing the possibility of breast cancer and also the diagnosis of this, which would hampered by the fact that I was a larger breasted lady (38GG), so after much consideration, deliberation and after taking as much advise as we could that I would have a bi-lateral prophylactic mastectomy with an immediate reconstruction.

I also decided that initially I would have a reconstruction with implants, as this meant the recovery should be quicker and less traumatic for us as a family as a whole.

Knowing that I have this spelling mistake, also leaves me with the knowledge that I may have passed this "bad blood" on to my two wonderful boys.  They will both be entitled to the genetic test at 18 should they wish and I will stand by whatever decision they make, but I also live in the hope that as they can now detect which gene the spelling mistake is in, that they make even be able to correct it by the time the boys are older.

After seeing what people with cancer go through, the chemo, the radiotherapy, the long term drugs to hopefully prevent the cancer returning, we are in no doubt that we made the correct choice for our family.

Yes what we have been through has been traumatic for the minimads, but the possibility of putting them through cancer and its treatment makes me feel physically sick.

In doing what I have, I have not wiped out my all my changes of developing cancer, but I have reduced the lifetime possibility drastically.  I understand that not everyone would have done what I did, but it was the right decision for me, I could not live year at a time just waiting for the cancer to show itself.  I was lucky in that I could take preventative measures, which is not always possible.

So Geriatric Mummy that is my blog post on it, although it hasnt answered your question about dementia. I feel for you I really do, to watch your father slip though your fingertips must be unbearable. No one can make this decision but you and your loved ones, but what ever decision you make, I will be here to support you and yours in any way I can.

Writing Workshop on a Wednesday

In an ideal world a hospital for me would focus on healing the mind, in addition to healing the body.  It would be a calm and peaceful place catering for all the needs of the people there.

Now I have been in and out of hospital enough lately to be able to say that the staff are wonderful and do the very best with the resources available to them, so this is not an NHS bashing post, but a far away dream.

On my visit in February this year, I was awarded a single occupancy room and it was fantastic, I had my own bathroom  area, which was in a wet room style, so I could actually sit in the shower, which is perfect after you have had a major surgery.  In fact this room was pretty acceptable for my whole stay in in, but could have been made more comfortable by FREE TV and Internet access or even better a wireless Internet access for mine and MadDads ipod and laptop.  I was very lucky and I had climate control - how swish.

I also have to say that the food was pretty acceptable too, so I am not going to complain about that either.

But when I had to be readmitted due to sepsis, it was a different story, the only bed available on the ward was in a multi occupancy room and this made it very uncomfortable for the lady's I was sharing with.  They had to put up with all the windows open all night on the first night to bring my temperature down, 3 fans going all night too and nursing staff and doctors attending to a delirious me every 15 minutes.  Also MadDad was still there too, so I can imagine that they were pretty uncomfortable.  Now this was only for the first night and they shuffled things around and popped me back in to the single occupancy room the next day and I was too out of it to even know that I was causing people upset!!

So on my wish list would be:

• 
  
  More access to outside areas, especially when you have children visiting you. We made it as easy and secure as possible for the MiniMads, but it still upset them sometimes. How wonderful it would have been if there was a park for the patients children, so I could have sat and watched them play. It would have been me so much more comfortable and not as desperate to escape.
  
  
  
• 
  
  Free parking for long term visitors (It costs MadDad a fortune and only when I was due to be discharged was a monthly parking pass mentions)
  
  
  
• 
  
  Better food and drink for visitors (MadDad was wither with me or the boys and his eating and drinking suffered massively as he had to eat on the run)
  
  
  
• 
  
  Wireless Internet access to help pass the time.
  
  
  
• 
  
  FREE television access
  
  
  
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  More holistic treatments available.  I was shattered and became very constipated and unwell due to my medications and their side effects, a massage or hair wash and dry by someone would have been wonderful.  Yes the nursing staff will assist you wash your hair, but it is hardly their priority.  Now I was pretty mobile, but could not stretch to wash my hair, so would have happily visited a hair salon somewhere else in the hospital, if it was free.
  
  
  
• It would have been nice to have an electric adjustable bed (only so many to go around and others were more needy than me).
• 
  
  Someone to come and talk about the mental effects of the operation with me whilst I was in hospital.  The nursing staff were great, but I had issues with all the complications.
  
  
  
• 
  
  More doctors and nursing staff, the ones that were on duty were pulled in so many different directions that sometimes you were made to wait what seemed like an unfeasibly long time.
  
  
  
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  Charts filled in correctly and coherently.
  
  
  
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  Pharmacies that delivery drugs punctually, when you are on an antibiotic that has to be given intravenously every 12 hours followed by a blood test 2 hours later, time is of the essence (it was not allowed to be kept on ward).
  
  
  
• 
  
  Doctors that can take blood the first time.
  
  
  
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  Doctors that dont say "I have heard that taking blood from your femoral artery is very painful" just as they are about to do it and then keep saying, I am sorry, whilst you scream the ward down.
  
  
  
• 
  
  Venflons that dont clog up or tissue when you sleep the "wrong" way
  
  
  
• 
  
  Tea on tap served in a t-pot with a cup and a little jug of milk.  I NEED my tea, even when very ill and being sick.  In the end the nursing staff gave me a large mug and knew every time I popped my head out the room in the middle of the night I needed my tea.  I became known as the tea monster.
  
  
  
• 
  
  No waiting times to see consultants when you get to hospital.  It is terribly demotivating when you have a 10am appointment, but know you wont be seen until 1pm in most cases.
  
  
  
• 
  
  More lovely nurses who are trained to take blood, they have just the knack and manage first time.  I am not afraid of needles, but it was a really good job as in the end I had venflons in my feet and blood taken from my groin and feet.
  
  
  
• 
  
  Single sex wards, not just rooms on the ward. 
  
  
  
• 
  
  A library, buying magazines and remembering what books you have read is hard work.
  
  
  

Quite a wish list I have there, but as I have said, you couldn't fault the commitment of most of the staff and the care I received was second to none, but there were times when a clear line of communication was lacking and I was left waiting for medications and specialist dressings.

OK so things didn't turn out the way they were supposed to, in fact they couldn't have gone much worse, but I am alive and underwent surgery again last week and the staff and Consultant really listened to me.  I was allowed to have quite a large surgery under local anesthetic and to come home.  I was also allowed to wait apart from the other visitors when seeing the dressing team (I am very fearful of infections now).

So were now for me, well I am hoping this last surgery will make it possible for me to wear my lovely sexy silicone prosthetics again and stop the bra running and causing sores and then we will see.

People ask about reconstruction, but at the moment I am content in knowing that I can have one in the future, one that doesn't involve implants for me to reject like last time.  One that involved my own body, but that is in the medium to long term future.

I could not face another major surgery again so soon, neither could my body and much more important neither could my family.  Recovery time would be a complete nightmare.

So maybe I will consider it in a couple of years time, when Mini and Maxi are 5 and 6 and need much less physical help from me.  I haven't wrote it off and neither has the consultant, he will keep seeing me every six months until I have my surgery!

So yes we have been on a journey and one that deviated from the prescribe route, but ultimately we will get to the same destination.  It may tale a little longer, we may use differing modes of transport and walk the untrod path, but I know that with the love and support of my family I will get there.  I will grow old to see them grow up and make their own mistakes.

This post was written with inspiration from the writing prompts over at Sleep is for the Weak for the Writing Workshop on a Wednesday.  It started off  as "What would you like to see in your ideal hospital?" and kind of ended up as my hope for ‘one day’

If you would like to read about the history behind my hospitalisations, then I recently did a guest post over at Bah! to Cancer.

I am Home

Just a quick post to let you all know that I am home, sore and tired, but so glad to have escaped from the hospital.  Unfortunately I have had to have more surgery than anticipated and had to have old fashioned stitched, which means I will have to go back and have them removed.

But I am at home and happy to be back with my wonderful family.

Also I would like to say thank you for all the words of support and a special mention goes to Bad Penny at The Hen House for making me cry with this post.

A letter to my Boys

Before I went in to hospital in February I wrote a letter to each of my boys in case anything happened.  In them I laid out what was happening and why.

So I am in again on Tomorrow and want to do the same.

MaxiMad

My wonderful, amazing boy.  You are my first born the one who taught me how joyful, exhausting and blissful motherhood can be.  You are a light that sparkles through all the darkness and calls out bringing happiness and innocence all in one great big parcel.

I want you to know just how special and unique you are and how much I enjoy being with you, learning with you and watching you develop in to a very special someone.  You never cease to amaze me with your ability and thirst for knowledge.  The way you see the world is so new and I am honored to be here with you for this journey and experiance.

I want you to know that I love you with every drop of rain that falls and every cloud in the sky and every sunbeam that shines through, with every breath of my being.  I also want you to know that I like you.  I like your enthusiasm and your thirst for life.   I like being part of our little team, councillor Amidala to your Obi Wan.  I like the running races, the bum sliding, the swings, the reading, the crafting, the singing, the dancing, the roundabouts, the scootering, the paddling, the star gazing.  I like all of it even the tears and frustration of being a four year old. 

I dont have many wants for you, just to be happy, to find a special someone and to experiance life to the full.

With all my love Mummy

MiniMad

Mini you are a whirlwind, a cheeky, lively and loving young man.  You bring joy and laughter wherever you go.  People love your happy face and happy go lucky ways.  You are a dancer, you are an amazing and unique person.

You are such a tryer, unwilling to let maximad be older, you want to be right there beside your brother and are such a tenacious wonder.  You insist on doing things for yourself, you always have and you will persevere until you manage.  You are headstrong like me and are a perfect cuddler.  You have such empathy and ability to read people and situations.  You have an innate ability to do the right thing.

I watch you dance and sign and can barely conceal my joy at your ability to move with the rhythm and clap along to songs that you make up as you go along.  You are never far from an instrument and bring music to life for me and MadDad day and night.  I love watching you draw and craft, you have such concentration. 

I want you to know that I love you more than words could ever say, more than I can put in to words, but along with that I like spending time with you and I like the person you are becoming.  I like the fact that you are always the centre of a group and can chat to any and everyone.  I like dancing, singing and making lots of noise with you, I like the fact that you want to be the Star Wars baddie, happy in the knowledge that you enjoy being bad and good!  I like the extra cuddles in the night and waking with you tucked in beside me.  I like skipping, chalking, talking, drumming, painting, running, baking and being with you.  You are a joy.

Again all I ask of you is to you out and experience life, to try and be happy and to find someone special who you can love.

With all my love Mummy

Now why I am doing this, having another some may say unnecessary operation.  Why can I just not go on as I am.  Well firstly I am having some additional breast tissue removed from my right breast area, if all the tissue is removed the chances of any cancer are reduced to 6% so it is in all our interests to have this removed ASAP.  I am also having some work done on the scaring at the front of where the double mastectomy was done.  This is so I can wear my prosthetics without the bra strap rubbing and making me very very sore.  Yes this is for cosmetic purposes, but I am doing this so that I can start to feel comfortable in my own skin.

I dont want people looking at me, I dont want you growing up and having to explain to your friends why mummy has no breasts.  I want to choose weather I wear my prosthetics today or not and when I do wear them I dont want them to hurt or to be too aware off them.

Now I know that you think mummy's scars are cool now, but I am doing this for us all as a family and like last time, this is the right thing to do for us all at this time.

I hope with all my heart that there are no complications this time and that everything runs smoothly, but just in case I want you to have this, these words, so that you may one day come to understand what I have done and why.

We are a family, you are my life.

PS for anyone wondering the cards in the boys hears read:

MaxiMad, you have such a strong mind and soft heart

MiniMad, your heart beats with the rhythm of your soul

Finally MadDad

There are no words that can express the way I feel about you, so it would be foolish to even try.  My earth, wind and fire.  My soul mate and my best friend.  Companion and lover forever more.

An Apple for the Teacher, well a necklace

MaxiMad gets a weekend homework project each week, nothing hard, just a little something.  It has been to learn his address, draw his favorite hobby, write to 20 and last week it was to draw some number and colour patterns. 

He gets his project on a Thursday and it is returned on a Tuesday, so this evening we got back from the park and checked out his book.  The comment from last weeks work was that his teacher liked his colour pattern and would love a necklace like that.  Well MaxiMad decided a necklace she should have (she wont make that mistake twice!!).

I have lots of beads for the boys, which I have bought when they are on offer or in the pound store, as I believe that threading is a great way to improve hand and eye co-ordination and it is a fun things to do.

So off he set with the beads and made an blue, red and orange necklace for his teacher.

There was lots of concentration, as he studied all the beads and picked which design and colours he wanted.

Here is the finished article.  He is very proud of his necklace and can not wait to give it to his teacher in the morning.

We use plastic cord to thread on to as it is easier and you dont need a needle.  This would make a great present for a grandma or aunt for Christmas or any Dad's out in blog-land, you could get the children to do this for their mummy for Christmas she would love it. 

The last time I was in hospital MaxiMad made me this wonderful wooden bead bracelet on elastic to wear and remind me of them.  I used it like worry beads and it means an awful lot to me and it made him feel like he had given Mummy something very special.  I will treasure it forever.

I am guesting at Bah to cancer

Over at the fabtastic (yep that is a cross between fabulous and fantastic, as she is both) Stephanie's Bah to cancer this morning.

I am finally telling my story and my choices, if any one is interested.

Whilst you are there, please also take a look at Stephanie's  blog, which is a heart wrench, but positive story of her dance with breast cancer.

Remember that is is Brest cancer awareness month, so get checking those breasts.

Hmm

I wasn't going to use this blog to write about my mastectomy and failed reconstruction, but it is a really big part of my life and, therefore, our family's life too.

I underwent the bi-lateral prophylactic mastectomy and reconstruction at the end of February this year and due to compilations had to have the reconstruction reversed. I then developed a post operative infection that very nearly killed me (sounds very dramatic, but at the time was horrific) and am just healing both physically and mentally.

I have been very lucky in that I am receiving some wonderful counselling from Tees Valley Counselling Trust to help me to become accepting of my issues and also have a very good team looking after me at the hospital.

I went to see my Consultant yesterday, who very kindly saw me at the local hospital rather than me going to the main hospital and very possibly having a massive anxiety attack. I needed to discuss with him the fact that my scaring was causing me issue with my prosthetics and could he do anything for me without putting me to sleep. It turns out that he is will to operate on me under a local anesthetic and also sedation too rather than a general - woohoo

I don't think I was fully aware of the pressure and worry that I was suppressing until we left the hospital. It was like someone had lifted a weight the size of a large house of my shoulders.

It is not going to happen for a couple of months (at least) to fit in with the MiniMads starting Reception and Preschool, but it will happen and then I can wear my prosthetics hopefully without pain.

When times are hard, I focus on the reason I made the decision to have the operation, my family. We really are a team. I think we all complement each other, enjoy each others company and prove the rule that "the whole is greater than the sum of the parts". I love my family with all my heart, they are the joy in my heart and the substance of all that I do and am.

Also I am so grateful for the wonderful people that have come into our lives because of this. I arranged for us to have a homestart worker when I knew that recovery would be quite hard and she is wonderful. She comes once a week and plays with the boys. She is a calming influence and ex-primary school teacher and a wonderful woman. We are blessed to have her in our lives, she enriches us all.

Speech Therapy Assesment

The eldest Minimad was born with a tongue tie which didn't go until he was 5 months old and it has caused him to have issues with the F sound, so the preschool referred him to a speech therapist.

This morning was his assessment at home and she asked him to sound out lots of words, to try and isolate where he had any issues.

He can sound it out at the end and middle of a word, but not at the beginning, so she is going to send us details of some fun exercises we can do over the holidays and see him once he enters Reception class this September.

I think we all want what is best for our children and I was so relived to hear that he has fantastic language and vocabulary and that she really has no concerns at all.

He did the exercise with her and then disappeared to play games with Grandma Mad and the youngest Minimad, whilst she explained all this to me and then as we were finishing up she put her arm on my shoulder and told me she had had a mastectomy two years ago and asked how I was getting on. I don't want peoples sympathy and hadn't told her of my issues - although I haven't got my prosthetics on (not many people notice or if they do they are too polite to say).

She told me that you could feel the love I have for my children from the moment she walked in the house and that I should cherise everyday as they grow up far too soon. How wonderful to have a virtual stranger come in and say that to you. I have tears in my eyes.