What would be your first meal?

After 6 months of being fed through a tube, my thoughts turn to which foods I am missing the most.
 I won't have a first meal as such, because food will gradually be reintroduced starting with liquid, moving on to soft food and then eventually back to normal.
With 3 to 6 months left to go these are the things I will be looking forward to once everything is back to normal.

• Burger King XL Bacon double cheese burger
• Sausage and fried egg cob (that's Nottingham for bread roll) with brown sauce and hopefully a runny yolk
• A Mr Whippy ice cream
• Fish fingers, chips and beans
• Wine gums (midget gems might be too small to chance in the future)
• Goddards of Greenwich pie and mash with gravy
• Tuna and chicken pizza
• A pint of Adnams Broadside
• Black Jacks
• A cup of sweet strong tea

I am sure this list will be added to over the next six months and don't forget to keep your fingers crossed that everything will be fixed by then.

What would your first meal be?

Did Feminism pass YOU by?

I don't necessarily consider myself a feminist, but I appreciate I have a good job, I bought my first house by myself and I have holidayed and travelled alone many times. All of these things would not have been possible for an average women not that many years ago.
However this week I have been shocked by the number of my friends who seem to define themselves by the man, or lack thereof, in their lives.
Regular readers will know I have been ill for a long time but whilst that is shit at least I have a husband. Apparently nothing can be worse that not having a partner.
Another friend has regularly started posting pictures on social media of herself looking loving into the eyes of her new beau. That's great and I am glad she is happy but what else is happening in her life? To read her media feed absolutely nothing.
I do also have friends who are strong women who go it alone. I am sure they would love to be in a relationship and have someone to share life's journey with, but they are not defined by it.
I could continue to expand and rant about how pointless life is unless you have given birth. I am one of the lucky ones. I don't have/want children. I can't imagine how awful it must feel to want children and not have them but is it the end of the world? Why can't life continue without children?
Is it really a physical/mental hole in your life or is it the fact the media, friends and family pressurise you into the fact you should be having children and you should be having them now?

Look at your friends feeds on social media and look at the difference between men and women? How many men complain about their lack of relationship status? How many fathers post nothing but child related posts?
There is a huge difference between the sexes and I don't think it's changing.

Care and compassion - the most important 2 of the 6 C's

Nurses make you better. Doctors chop you up and solve the problem but nurses are the ones who care for you and make sure you get better.
There are many ways in which nurses can make you better and I have been amazed by the difference shown between nurses. They are overworked but still have to treat each patient with care and attention even if the patient before has wound them up or treated them badly.
After I had my first PEG feeding tube fitted I was awake during the night and I couldn't stop crying. The PEG was much longer than I had expected it to be and I was panicking that I would roll over in the night and trap it. Possibly even pull it out. In the very early hours of the morning a nurse came in to change a drip and I tried my best not to cry. He changed the drip and checked I was okay. When he saw I had been crying he asked me what was wrong. The flood gates opened. I couldn't stop. He stay with me and explained how well I had done and how everything was going to be okay. A few minutes later another nurse came in. He also explained how it was good the PEG was so long as it meant I could manage it myself and not need help.
These two nurses sat with me for at least ten minutes calming my fears and making sure I was okay. I had no medical needs but they spent time with me anyway, truly showing the care and compassion nurses need.

After my partial laryngectomy I had two drains in my neck, a tracheostomy tube stitched into my neck and stitches running from my chin to my chest to stop me moving my head. Needless to say everything was very sore. A nurse came to clean my wound. As he was doing this I oohed and aahed a couple of times due to the soreness. I couldn't speak as part of my larynx had been removed so these noises were not that loud.
The nurse stopped what he was doing and started shouting at me. 'Joanna, Joanna,' he shouted. My name is not Joanna and because of the stitches I could not move my head to look at him.
'Joanna, I have to clean this or it will get infected,' he shouted. I mouthed that I knew that. He finished cleaning the wound, redressed it and left me crying in my bed.
This nurse was also the third nurse on this ward to get my name wrong. When I mentioned it to one of them she said, 'well it's close enough.' Another example of not really caring about the people you are treating.

The first example was Rotary Ward at William Harvey, the second example Guy's hospital. Round three goes to Rotary and they lead 2-1.

No counselling you're not dying

I have had five surgeries, two of which went wrong and three of which were to correct the original two. I am now unable to speak and have secretions running out of the front of my neck all over my clothes.
I am a little down and was pleased yesterday when finally it was mentioned that counselling was available.
Today I have been told that I can't be refered for counselling based upon my surgeries because I don't have cancer.
I have to go to my (overworked) GP and ask her to refer me.
I should be able to get an appointment with her in about two weeks and yet again I will be post op, with an open wound, sitting amongst people with germs. My consultant says the most important thing at the moment is for me not to get a chest infection so sitting in a GPs waiting room AGAIN is exactly what I need.
Yet again help with mental health issues is made as difficult as possible to get. I am not depressed but some help would be appreciated. Guess I just have to hope I get better on my own.

Is my mental health part of the recovery process?

Having had five operations in the last five months and now being back to where I was four months ago I have been feeling a little low.
 I would not say I am depressed but I am not my usually jolly self and tears flow a lot more easily than they ever have before.
I have now mentioned to a number of different health care professionals that I come into contact with that I am feeling sad, and this has been greated by such wisdom as:
'Yes a lot of patients feel low after surgery.'
'Well we knew it wasn't going to be easy.'
'There is a long way to go yet.'
Before the surgery there were many offers of meeting people who had been through something similar and talking things through before I made the decision as to which surgery to have. But now the surgery is complete I just need to get on with my rehab with the help of speech and language therapists.
Surely if my state of mind was positive the potential for my physical rehab would be higher.
Where is the support for my state of mind?
Is the link between mental and physical well being obvious?
Or do I have to hit rock bottom before this help is offered?

What you need to do is rest - In a hospital?

Many people will tell you that when you are ill what you need to do is rest, and above all get plenty of sleep.
However in a hospital this can be virtually impossible.
First you have a drug round at about 10pm, then depending on how much you need monitoring you will need your blood pressure etc. taking at about 2am and if like me you are a trachi patient you trachi will need checking and cleaning during the night. Depending on your feed regime you may need a new bag of feed at around about 4am and then there is the drug round again at 6am. Consultant do ward rounds between 8 and 9 and then it is time to get up.
As you can see sleep is broken at best and this assumes you can get back to sleep quickly.
Rotary Ward at William Harvey Hospital were very good at trying not to wake you up. I have woken a couple of time to find my feed bag had been changed without me having woken and the lights are turned out and for routine checks the nurses come round with little torches to ensure you are disturbed as little as possible.
Guy's hospital did things a little differently. Even thought I was in a side room the door was never fully closed so I always had the light from the corridor shining into my room. But what they do is they give you a welcome pack when you are first admitted and the two most important things in that welcome pack are a pair of ear plugs and a sleep mask. These are invaluable at ensuring a good nights sleep.
Considering how cash conscience Guy's were in everything else they did (more on this in later posts) this one little thing did make all the difference.
Sorry Rotary but this round goes to Guy's 1-1 for now.

Let's hear it for the boys

Having watched the Lisa Lynch biopic on BBC this week I was impressed by her strength and the amazing way she handled her illness. I am sure no one who watched that would have felt any different.
But how many people spared a thought for her husband. Here is a young man who early on in his marriage has to cope with this horrible illness and potentially the loss of his wife. With few exceptions he was strong and held it together for her. He was there whenever she needed him and what outlet did he have? What support did he have?
Having suffered from a long term illness myself I know I could not have coped without the support of my husband. He has been there through all the hospital appointments, the surgeries and the many time I have had to cope getting back into home life.
He puts up with my rants and and my rages, my highs and my lows. He calms me down and cheers me up.
Without him I would not have made it this far never mind the thought of making it through the next six months.
So let's us give a cheer for our support network and make sure on the good days they know how much you appreciate them. For on the bad days they are all you've got.

Confusion in the NHS - Well for this patient anyway

Recently I spent a lot of time in my local NHS hospital - Wiiliam Harvey in Ashford. Due to issues and complications last month I had to spend two weeks in Guy's Hospital in London. I could not believe the difference in the two hospitals and I'm guessing you'll be surprised by which I thought to be the better.
The thing that has struck me the most was the differences between the two hospitals when it comes to discharge.
With William Harvey my consultant wrote me a sick note signing me off work for an allotted amount of time. He said if I needed more I could go to my GP and get a continuation but that in his opinion I should be feeling well enough for work by the end of the sick note.
Upon discharge from Guy's hospital I asked for a doctors note. 'Oh no we don't do those here,' said the nurse. 'You need to go to your GP.'
I have been discharged from hospital on a bank holiday weekend. On Tuesday morning I need to get myself to the GPs surgery and sit amongst people with colds and other transmitable diseases just to get a sick note.
When I eventually get into see my GP I need to explain the surgery and ask for a sick note. I am not sure how she is supposed to know how long I need so I am guessing she will give me a note for a fortnight and then I will have to repeat the process in 14 days time, assuming I can get an appointment. Oh and I have to do all this having had part of my larynx removed and not being able to speak.
This is taking up my GP's time and exposing me to unnecessary risk of infection all within days of being discharged from hospital. I would love to know how at anyone at Guy's hospital can think this is a good use of NHS resources when a doctor could have written this note out for me during his rounds on the day of discharge.

One - nil to William Harvey I think, don't you?

Keep checking out the blog for further posts on how William Harvey know a thing or two about patient care.