Full v Partial Laryngectomy - the verdict so far

Four months ago I had a partial laryngectomy. At the time I was debating having a full laryngectomy and two different consultants effectively talked me out of the procedure. Four months on I am struggling with the decision I made. Here's how it went and how I thought it could have gone had my decision been different.
Had I have chosen to have a full laryngectomy I would have been eating within two to four weeks of the operation. I would have been talking within six weeks. In order to talk I would have had to had a value fitted which would need changing regularly. This procedure is done by popping in to see your local speech and language therapists and takes about 20 minutes. It is not known how often the valve needs changing but it can be as often as once a month or as seldom as once a year, everyone is different. This valve would have enable me to have had a stronger, but deeper, voice and it could have been adjusted until I got something I liked.  The main disadvantage was that I would have had a stoma in my throat for the rest of my life and would have had to insert a filter each day. This procedure would have been similar to what I have been doing every morning for the last seven months while looking after my tracheostomy.
But I didn't chose the full laryngectomy because, to quote one consultant, 'there would be no going back and with a partial laryngectomy within a year it would be as if all this never happened'.
So four months into my 'intense' rehab here is the reality of the situation.
After the operation I couldn't speak for six weeks. Now I can speak my voice is very quiet and weak. I get breathless and can only talk in short sentences and for short periods of time. As I only have one vocal chord it has got inflamed and swollen, This has caused a blockage in my airway and is making it difficult to breathe. This possibility was never discussed with me when I had to make my original decision.
I often get breathless and struggle to walk any distance. I can't walk up stairs and travel at about half the speed that I did before the operation. Apparently this is because my airway is narrow, again this was not discussed with me. Apparently this could be because there is some swelling from the operation. As I mentioned earlier the operation was four months ago and when I started this there was a chance that my rehab could have been finished in three months. With that knowledge I find it difficult to imagine that there is still swelling from the operation. And if there is could someone please tell me when it is likely to go down so I can start breathing again.
I can't swallow my own spit so I have to have a receptacle with me at all time to spit into. This means I can't leave the house other than to go to the hospital or work. Retail shops tend to frown on their customers spitting as there wander around the cashmere jumpers or fresh veg. I have been very lucky that the people at work have put up with me spitting into a cup all day. Without that release I would have gone stir crazy by now.
I am carrying out swallow exercises in order to restore my swallowing function but it is hardly the 'intense' rehab I was led to expect. I have to try to swallow five teaspoons of water every two hours. It is horrible as most of it hits my lungs and leaves me coughing like a 80 year old who's smoked forty a day all her life but it is not what I would  call intense.
Finally the rehab was supposed to take three to six months with no mention of it running past that. There was even talk of pushing me harder to get me through it in three months. Well four months in and my next swallow X-ray has been pushed back two weeks. Hardly any time at all you may think, but when you don't leave the house because you can't function and you have been fed via a tube for nine months, two weeks feels like a life time. It is also another sign that things aren't as good as they should be.
So was the decision to have a partial laryngectomy the right one? At the moment I doubt it but hopefully I will be proved wrong.

HME's - Swedish Nose v Bib - A Patient's view

When you have a tracheostomy you intake all your air through a tube inserted into your throat. One of the problems with this is that the air goes in dry and cold and doesn't have the benefit of the warming and filtering effects of you nose. In order to replace your nose's function a HME (heat and moisture exchange) is required.
Up until a week ago I have always used a Buchanan bib but at my last hospital visit it was suggested I should try a Swedish nose.
After my first week here is what I see as the pros and cons of the two systems.

Buchanan bib
Pros

• The bib covers the trachi and gives the patient some privacy when out in public. A stranger would not know what was under the bid and not necessarily know the patient had an illness or disability.
• The bib can be washed and is easy to keep clean.
• A bib lasts three days.
• The bib catches projectile spit/mucus that can be ejected from the trachi when coughing.

Cons

• Unfiltered air can still enter the trachi around the sides and the bottom of the bib.
• Although in hides the trachi the bib is fairly obvious and doesn't match most outfits so can look out of place.
• In high winds the bib can be sucked against the trachi and cause some breathing problems.

Swedish nose
Pros

• The Swedish nose fits snug on the end of the Trachi and therefore all the air is filtered.
• There is a flanged opening so suction can still be carried out even with the HME in place.
• I have found if you wear the Swedish nose under your shower protector in stops the shower protector from occluding the trachi and makes breathing much easier.
• It stops mucus from escaping when you cough and staining or being absorbed into your clothes. 

Cons

• The Swedish nose attaches onto the end of the trachi and therefore the whole of the trachi is visible when you go out.
• It only lasts 24 hours and then you need a new one.
• If you cough and produce a lot of mucus and don't suction as you cough, it can gather in the Swedish nose. This causes moisture build up which means the HME loses efficiency. This can also make breathing feel more laboured which means changing the HME more regularly.
• If you have a strong cough, as I do, you can cough the HME off. So make sure you always carry a spare.
• More pressure is needed to occlude the trachi to talk. If you have a sensitive trachi this can lead to more coughing.

I have had a few teething problems getting used to the Swedish Nose but if it is protecting my airways and giving me less chance of getting a chest infection then that can only be a good thing.

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.

You wait months for a PEG – and then two come along at once

Those of you who have been following the story of my PEG will have seen my previous two posts:

NG v PEG feeding tubes & My PEG two weeks in.

As described previously it looked like my first PEG had embedded itself into the lining of my stomach after only fourteen days. The general protocol with a PEG is that after fourteen days the PEG should be pushed a short way back into the stomach and rotated. This shouldn’t be done any sooner as the tract needs to form between the stomach and the outside world. Any sooner and there can be complications with the internal layers not knitting together properly and there is the chance of infection.

Last week I had an endoscopy to check that the bumper really was embedded. This has to be the worst thing I have experienced since becoming ill. As I lose the ability to breath if I am sedated and laid flat the endoscopy had to be done whilst I was wide awake with just some numbing spray for the back of my throat. I felt as though I was going to choke as what has to be the largest camera in the world was pushed down my throat. At one point I thought I would throw up, and wearing a month guard and with a camera in my mouth I was not sure where the vomit would go, except back into me.

I cannot praise the nurses highly enough. The one with me kept talking to me, assuring me everything was okay and keeping me as calm as she could while the camera went down. Once the camera was down it was not as bad. Until the camera is brought out and then you have to go through the whole gagging process again.

So we now had confirmation that the PEG was embedding but that for the time being it was still working. I was told to continue using it until I could return for a new PEG to be fitted under general anaesthetic five days later. If at any point I was in pain through using the embedded tube I should go to A&E. This did not fill me with joy as so far this had always meant a four hour wait to then meet a doctor who knew nothing of PEGs and who couldn’t help me.

So I then arrived at the hospital five days later to have the new PEG fitted. The plan for the old PEG? Well they would try and pull it out but if that didn’t work then they weren’t sure what to do.

I had been nil by mouth since 10pm the night before. With a Trachi getting dehydrated can cause coughing and a lot of discomfort. There were three people waiting at 7.30am to see the same doctor and I was the last to be called. I finally went into surgery at 12.30pm. I know there is a list and therefore we can’t jump the queue but at the very least they could have let me have some water or some I.V. fluids rather than leaving me fourteen hours without anything.

Finally I was taken into the theatre and put to sleep. Imagine my surprise to discover upon waking that I now have two PEGs.

It took five hours for the registrar to arrive and to explain that they had been unable to remove the old PEG put hadn’t cut it off and left it in. She couldn’t explain why as the doctor who completed the surgery had already left the hospital to go on holiday.

The next day I was in a considerable amount of pain. I was sent for an x-ray and then doped up on Tramadol. The nurses were going to come and clean the wound and show me how to care for it, but unfortunately they were too busy, so left me with two wounds encrusted in dried blood for another day.

The day after that I was sent for a CT scan and when that didn’t explain the pain they decided to send me home with some pain killers. I have still not spoken to the doctor and there has still been no decision made as to the way forward to stop the second PEG from embedding in my stomach wall as the first did.

The treatment so far has very much been ‘well the first PEG shouldn’t have embedded, so we’ll just hope the second doesn’t.’ I have a doctor who was more intent on leaving for his holiday and who has left no instruction as to then next step with his junior doctors or his registrar. He is going to ring me tomorrow but I won’t be holding my breath on that phone call!

So keep tuned for the next instalment of how not to fit a PEG and remember if you have the choice stick with an NG tube.

Me and My PEG – two weeks in

Two weeks ago I wrote a blog about the difference between NG and PEG feeding tubes from my point of view. If you missed it the link is here.

After that blog I was asked to update people as to how I was getting on once I was used to the PEG.

I decided to wait until it had been in two weeks as after two weeks the PEG has to be advanced and rotated. What this basically means is that the bumper on the outside of your skin is released and the tube is pushed back into your stomach and rotated through 360 degrees. This is to ensure that the internal bumper is not attached to your stomach lining.

I am not sure why you have to wait two weeks but that is what is recommended.

So as of yesterday I was getting ready to write this blog and talk about how I was no longer in pain with the PEG. How it is easier to shower. How I look more normal, no longer having a feeding tube sticking out of my nose and how I can have water whenever I like as I no longer have to check the location of the tube using a pH test.

That was what I was going to write until the nurse turned up to advance and rotate the PEG. The problem you see is that after exactly two weeks the PEG won’t advance. Yes that is correct, having done everything I was supposed to do the PEG has managed to get stuck in my stomach lining any way. This could never have happened with an NG tube.

Because of this I got to spend four hours in A&E waiting for an endoscopy nurse to try. The thing is no one in A&E knows what to do. You can’t blame them. My tube not rotating is neither an accident nor an emergency but the ridiculousness of the NHS dictates that I have to go there first to get treated.

When I finally got seen the nurses from Endoscopy where very caring and concerned but they still could not get the PEG to rotate. The doctor who fitted the tube also turned up and could not get it to advance. And that is where we left it.

Today I am going for an endoscopy so they can try and pull the tube from the inside of my stomach. If this doesn’t work they will just fit another one and leave the one that is embedded in my stomach lining there for the rest of my life. Oh and by the way there is no guarantee that the next PEG won’t do exactly the same thing.

So yet again can someone explain to me why PEG’s are so great and NG tubes are so dangerous?

NG versus PEG feeding tubes – This patient’s view

For the last two and a half months I have been fed through an NG tube. For the first two weeks much of this was done for me by the nurses at my local hospital and I had time to observe and get used to the feeding regime. For the last one and a half months my consultant has been trying to organise switching me to a PEG. For various reasons the procedure kept getting moved and finally on Thursday I had a PEG fitted under general anaesthetic. On Friday I returned home and now have to manage feeding myself with a new system that I have only seen used once in a hospital setting.

Everyone I spoke to assured me that the PEG was far better and easier to care for than the NG tube but having managed with the NG for nearly three months I have my doubts and I am not sure I would have switched if I had known then what I know now.

In an attempt to put things into perspective here are my pros and cons for the two systems.

NG tube

Pros

1.       It enters your body through your nose and a new stoma (hole) does not have to be created to accommodate its insertion

2.       It can be tucked discretely behind your ear and therefore doesn’t get in the way when not in use.

3.       The way my tube was set up there were two taps which could be used to insert feed, meds and water into the tube. This meant if you need water during you feed your could stop the feeding pump and flush water without needing to disconnect anything.

4.       Tap water can be used to flush the line and for ‘drinking’.

5.       If the NG falls out a new one can be inserted into your nostril relatively easily. It is uncomfortable but the hole is already there so no cutting new ones is needed.

Cons

1.       The tube has to be taped to the side of your nose and possibly to the side of your face to ensure it doesn’t fall out. This tape leaves your face sticky and difficult to wash and has to be replaced every few days.

2.       The tube coming out of your nose means everyone knows you have one – although if you’re looking for a sympathy vote this is actually a pro.

3.       In order to use the NG tube your first have to check it hasn’t moved. It is possibly that it could slip into your lungs. This is unlikely, but possible, so every time your use the tube from scratch you have to aspirate. This involves drawing fluid from the tube and testing it on a pH strip. The fluid should be stomach acid and should turn the strip red. There are a number of problems with this:

a.       Sometimes you can’t draw any fluid. In this case it is recommended that you lie on your left side and wait. Hopefully in about twenty minutes you should be able to draw some fluid.

b.      You draw fluid but it turns the pH strip blue. This could be for a variety of reasons but it means you cannot use the tube as you cannot be sure that it is in the right place. Again you are recommended to lie on your left side and wait, trying again later. If this still doesn’t work there are a number of ways to check the tube is in the right place but they all involve a trip to the hospital.

 

PEG

Pros

1.       It can be tucked down your trouser leg when not in use. Hopefully it will not get tangled in my trouser when they need removing but this has yet to be seen.

2.       You do not need to aspirate to check it is in the right place and it is sticking out the side of your stomach – there is no place else it could go.

3.       No one knows you have one.

4.       My throat needs to heal so being fed through a tube which isn’t going through your throat is a good thing.

Cons

1.       It goes directly into your stomach and therefore a hole has to be cut through your stomach lining to the outside world. This hole has to be cleaned and maintained – by rotating the tube – to ensure the tube doesn’t get embedded in your stomach lining.

2.       My tube only has one tap. In order to take on water whilst feeding I have to stop the feeding pump, remove the line and then flush water. This is not a difficult task but does require at least three hands in order not to have to put anything on a surface that may not be totally clean.

3.       I have been advised to use sterile water as the PEG misses out some of your stomach.

4.       It the PEG gets pulled out I need surgery to refit it.

5.       My PEG is very long and dangles down by my knee. This seems too long and has the chance that I may roll onto it in the night or sit on it during the day and displace it. I have been told I can cut it but I am not sure about this. If I do it wrong, it is surgery to get a new one fitted.

6.       Currently my PEG hurts. This is mainly because I have had surgery and a hole cut into the wall of my stomach less than three days ago. I am assuming this will stop soon.

7.       After fourteen days you have to push the PEG in, twist it round and then pull it back out again. This is to stop the thing holding it in your stomach from embedding in your stomach lining and sounds relatively straight forward. However, you have to make sure that when you pull it out it is in EXACTLY the same place as when you pushed it in. There are marking on the tube to help with this. I didn’t really understand the consequences for not doing this right but I do remember it sounded bad. Back to google for me on this one.

8.       The PEG has to be cleaned daily and checked for discharge and rubbing behind the plastic plate that holds it to your stomach. If it gets infected you need to contact a medical professional straight away.

 

I know I have only had my PEG two days so I still am getting used to it, but I do not yet see how it is so much better than an NG. Yes there are things you have to do to look after an NG which are difficult but it seems to me there are just as many things that have to be done to a PEG, and with a PEG if you do it wrong you need surgery to put it right.

Do you have experience of either of these devices? How did you find them? Did you switch between the two and if so which worked better for you?