Showing posts with label bah to cancer. Show all posts
Showing posts with label bah to cancer. Show all posts

Friday, 7 May 2010

A little help for my friends

I have been ever so lucky in this wonderful world of blogs to have made some great friends and have met some really inspiring people, so today I want to tell you about a couple of them and ask you to help where you can.

Firstly Stephanie.  Stephanie is an inspiration to me, has been since the moment I first read her blog Bah! to Cancer, you see Stephanie has been dancing with Breast Cancer (you don't die from dancing do you?) and  doing so in a dignified and insightful way.

One of Stephanie's Ideas is the Bah! Brilliant Book Bonanza, This is a great way of giving uplifting books to people who need a good read. 

She is also taking part in the race for life and has a Bah! to cancer team.  All in all she is a really special kind of person, once that you don't come across all the time.



Next up is Dan and the Hadrians Walkers, who are these people you ask and what are they doing.  Well they are a group of 60 people who in July will be walking the length of Hadrian's Wall in six days. That's 84 miles across the entire width of England.
space
They are  walking in aid of the Joseph Salmon Trust, a charity founded by Dan's friends in memorial to their son Joseph who died aged 3 in April of 2005.
space
The Joseph Salmon Trust supports parents who have lost a child by providing financial assistance to those who need it most.


You can find their just giving site here 
  


Share/Save/Bookmark

Thursday, 28 January 2010

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? 


Share/Save/Bookmark






Wednesday, 18 November 2009

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


  • 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.


  • Charts filled in correctly and coherently.


  • 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.


  • 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.

Monday, 12 October 2009

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.
Related Posts with Thumbnails