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It’s not always about the patient !


This post isn’t about me it’s about family and how they are affected by my ill health and my hospital stays. It’s something I’ve mentioned but recently the effects have been bad have been BAD.

As you know I’ve just been discharged after being in hospital for eight weeks. My husband has had to keep the house running, the children going and visiting Me AND all my extra washing as well as things I wanted bringing into the hospital.

Now being a military wife some might say well it’s just the same as when the husband or wife go away on tour. That’s just wrong, when a husband or wife goes away for 4 or 6 months we have to juggle the house, children, dogs, and family we do not have the added stress and worry of having a loved one in hospital and the additional stress of visiting , and finding parking, which is damn near impossible as Stoke Mandiville Hospital! He’s had to cope with the children being upset because mummy is sick, the seven-year-old who is waking up in the night because he misses mummy and is scared that something bad is gonna happen . He then has me phoning whingeing saying I’m having a bad day, saying the crazy patient opposite has been literally screaming for ten hours or that the little old lady you really liked had passed away. Venting my frustrations about Doctors or Nurses or that HCA who was making up numbers when taking SATS (yes I reported him).

When you get home I hope everything will go back to normal but it doesn’t, you come home to a seven-year-old who is crying because she wants a cuddle yet she’s sitting on your lap cuddling you. A child who doesn’t trust your home to stay so doesn’t want to be away from you. One who’s regressed so so much your no longer mummy but mumma.

It gets worse!

While is in hospital I was I thought I kept in the loop about D and how she was coping at school which wasn’t well and what was being done about it.

You come home and take over school run because she wants which is fine and I’m quite liking getting back to normal. Your then told by senior member of staff that she is not just been having a bit of a rough time, she’s now the polar opposite of the child you left.

The highlights.. {scarcasm here!}

*she barely smiles [was known as a smiler last year]

*refusing to work to the extent she has been removed from the class! [just wow this has NEVER EVER happened]

*crys everyday over everything and nothing (again new)

*not speaking to adults well [ok well yes she need reminding sometimes but it’s never been an issue.]

And so much more.

I may have been in hospital, but, she has 2 parents. Yes they told G that she was struggling but OMFG REALLY ….. we could have put things in place .. support or I don’t know?! arranged for me to call her every lunch time … oh I don’t know but SOMETHING … now we are in a situation where it appears that her form teacher thinks she’s a “bad kid” [my assumption not something that’s been said – but I do have my reasons ] Now, they do have pastoral care type person Miss A and she’s great but she’s not in the classroom she’s there as a defuser for when this kick off or have a melt down [again an assumption based on what I’ve seen ] don’t get me wrong she lovely and when D has has a melt down she’s taken her off for a walk so daisy can chat away to her heart content and do a bit if a brain dump- ready to return to class.

My my poor girl [ive not forgotten my boy but I think he would appreciate me just saying how he’s suffered too but because he’s well ard he ok… I joke but seriously – Yes he’s suffered, but since being in cadets he seems to be able to handle things much much better – that said young careers are also helping out]… where was I? Yes D she’s massively been suffering and I feel that we have been somewhat been kept in the dark… perhaps from a well meaning standpoint but one I wholeheartedly believe is wrong.

So …what have we done, tried to reassure her as much as we can especially as she doesn’t believe for one second that I’m not going back into hospital. I’ve sought advice from my wonderful GP who I cannot thank enough Dr L ..and I’m going to see her teacher Tuesday.

Dr L said something that’s very true…

Your family are professional copers…no one knows how much you are going through and dealing with as you have a vissard.

So trying to lower the vissard here’s a few little known family facts ..

Ok dropping my guard here!

G wakes up early every day to prepare my medication. Every day so that I can move in the morning, as without my medication I’m stuck in bed.. [there’s about eight meds, some need crushing and putting into water, some are liquids all need to be in syringes and then go into my feeding tube (PEG)].

Another random one not many people know about is..

I cant be a passenger in a car more than 20 minutes without vomiting [violently even after medication, yet I struggle with fatigue so don’t drive too far… what to do? The thoughts are that the radiotherapy damaged my inner ear massively which also accounts for some of my valence issues.

Anyways this is me signing off – I usually say still smiling but today I am truthfully not smiling

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The expert patient


I think I’ve written about this previously,  but my GP actually called me this the other day. I was at the doctors, as I am almost weekly at the moment and my Doctor who I respect massively said “well it’s easier when you have an *expert patient*” now, I know why he said this but I can’t help feeling like I’m a nuisance to them, I hate the fact that the doctors and support staff recognise me and say hi Stephanie when I go in, the logical part of my brain knows that they are just being polite but the anxious overthinking part my brain feels as though they are fed up of seeing me, these feelings were made worse in the last couple of weeks let me fill you in.

So on the 3rd of January my peg tube fell out due to the balloon springing a leak. I went to Stoke Mandeville Hospital as I’m supposed to and had to get a new tube inserted. This time there was a problem the hole had started to close so I needed to have a RIG placed

**A radiologically Inserted gastrostomy is a technique whereby a narrow plastic tube is placed through the skin, directly into your stomach. Once in place the tube can be used to give you liquid feed directly into your stomach, to provide nutrition.**

 

As soon as I came round from the procedure I knew something wasn’t right I had pain unlike anything I’ve had before which turned out to be free fluid and air in the abdomen which of course got infected I ended up staying in hospital for almost 3 weeks. Even once home I felt that something wasn’t right and i was having temperatures and abdominal pain (upper left) .  I’ve been back and forth to the doctors for various antibiotics, which seemed to work for a while but then the pain and infection would rear its ugly head again. I’ve been back and forth to the hospital and we couldn’t find out what was going on, and why I wasn’t getting better!

On the 24th Feb I went in with massive temperatures which we couldn’t control at home. I was kept in for 24 hours for IV antibiotics and they also checked the placement of the Peg which was fine (as I had told them it was). On this admission something went wrong! As I was signing in at the reception of accident and emergency at Stoke Mandeville Hospital,  the woman behind the desk could not understand my surname and kept writing it wrong telling me I wasn’t on the computer,  so I wrote it down in capital letters clearly. She still got it wrong! which I simply cant understand (its not like it was rammed). it might not seem that important but it meant that the blood test results and the swabs that were taken were under a different name, and therefore were not checked.  This proved to be a real problem as they showed I had a extremely serious infection which needed treatment. I continued struggling on trying to convince myself this pain was in my head and that I should just man up.

So this week I had to see the duty doctor (GP) as the second or third (lost count) lot of antibiotics had stopped working and the pain was increasing AGAIN, she wanted to get me admitted but I begged to stay home, she agreed on the condition that I see my regular doc after the weekend (cue crazy voice thinking/saying things like *back again!* and I felt rather anxious) but I did agree to come and see Dr P.

Well Dr P took one look at me and knew I wasn’t good, he wanted me seen at the hospital so off I went.

The docs and nurses had 8 attempts at getting blood and after each failure they called a more senior person.  I was in the waiting room for 13 hours in total! 13!

Whilst there Dr P called and said you need to go and tell your doctor your swab results are back it’s MRSA! (in my peg stoma site infection centred on stomach wall its thought) Bloody marvellous that’s just what I wanted to hear!  

The problem was these results were under the misspelt name so didn’t show up on my arrival!

So I tell the doctor and things finally start happening, I’m told that I will need a  PICC line and I will need very strong antibiotics at which point I told them I was not staying hospital. There are several reason for this, the first being the children, it upsetting for them and disruptive and of course I miss them  on a more practical level we would need before and after school club to cover hubby’s working hours and we simply cannot afford this. Thankfully with the persuasive powers of a specialist nurse “L” they agreed to let me go in for IV antibiotics and come home in-between doses. this is obviously needed but if I am being 100% honest I’ve simply had enough! this isn’t normal I can’t help but to ask why? why is all this happening to me? of course I put on a front and pretend that I am fine with all this, but it underneath I’m not fine I’m struggling mentally and physically and practically. What I want is someone to come and scoop me up take control and deal with all my s*** because I feel like I want to run away, but that’s not gonna happen. I now have 2 medical devices “in” my body – my feeding tube and a PICC line, I know the PICC wont be there forever but its just another thing to make me feel ugly. I wish that I just got colds or sore throats but NO I get pneumonias and MRSA. Its exhausting and I genuinely feel alone in this – making friends is hard especially when you are as unreliable as me – not through choice – some days I’m just so tired that if I don’t have a nap I could fall asleep at the wheel on school run (not that I would drive if I felt that tired).

I’m going to come back to this tomorrow but for now it mega late and I need to be asleep

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Not the best start to the year,onward and upwards -I say


Well 2017 thus far has been a bit of a bugger ! and hasn’t gone quite to plan

I think I got up to about the 11th in my last post – well I ended up being blue lighted back to hospital. I had attended the Medical centre near me, who, incidentally are simply fabulous, even the receptionist is such a lovely lady H her name is and she just gorgeous and lovely  (apologies if that upsets but we have had some right doozies of doctors receptionists in the past),   I was booked in as a emergency patient and saw the big boss doc (the one who’s car parking space is next to the very narrow disabled space, its so nerve wracking every time I get in and out of the car, I’m worried that I might accidently bash his very expensive Jag when getting out- but so far so good). I went into see the doc who had a look through my records so had a good idea of why I was there, I had a v high temp again and my belly was HUGE, I’m told I passed out in his room as well, but I don’t recall this, so that was that back to hospital.

Once I got to the hospital it was clear I needed IV antibiotics AGAIN and TPN and I would also need a PIC line – its like a cannula but its 40cm long as it goes into the top of the arm and follows they vain all the way to a big artery at the top of the heart .

Here is some information from the PINNT website, they offer great support and information for those with artificial feeding issues etc.

What is Parenteral Nutrition?
Parenteral Nutrition (PN) is a means of supplying your body with nutrients and hydration which bypasses the digestive system. This is achieved through the insertion of a catheter directly into the bloodstream, through which a feed that is specific to your needs is administered. This is commonly referred to as Total Parenteral Nutrition (TPN) or HPN.
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What do the letters TPN mean?
TPN is a common abbreviation for TOTAL PARENTERAL NUTRITION. This literally means to eat (-enteral) through the vein (par-). However the terms PN (Parenteral Nutrition), HPN (Home Parenteral Nutrition) and TPN are often used interchangeably.
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How will the nutrition enter my veins?
A very fine soft tube known as a ‘catheter’ is inserted under the skin of your chest wall into a large vein that leads to your heart. A local anaesthetic is given beforehand to minimise any discomfort. A mild sedative may also be given while your catheter is being inserted. The procedure is normally done under Xray guidance. Once the correct position of the tip of the catheter is confirmed it can be connected to a container of PN fluid using a giving set.
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Will PN contain everything I need?
Your doctor and the nutrition team will have calculated the amount of nutrients you require in your PN to keep your body well nourished. This is done by making measurements of your weight, height and by blood tests and urine collections. Changes may be made to your feed to meet your on-going needs. Due to PN being prescribed on an individual basis, some people may make additions to their PN, if this is necessary you will be taught how and when to do this.
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When will I be fed?
Most people on PN feed whilst they are asleep however it is well documented that the infusion time often extends beyond time spent asleep. You will determine how best to fit in the time you require in order to complete your infusion time with your lifestyle. During the night sleep patterns may be disturbed due to necessary visits to the toilet. Many people find they adjust to this over time but people reported sometimes feeling tired depending on the number of times they need to get up. Feeding as much overnight allows freedom during the day, evening or morning. Each person’s infusion time will be agreed in line with your personal needs. New patients may be given a set time with this being reduced over time.
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Will I be confined to bed or at home?
HPN should not be restricted to lying in bed or staying at home unless that is your choice or is necessary for your individual needs. Portable feeding pumps have made it easier to be mobile whilst receiving your feed. Not all patients want to use a portable pump but improved mobility can be achieved with smaller drip stands for use around the home.
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How long will I need to be on PN?
Some patients will require PN for only a short time, such as to permit the digestive system to rest following surgery or illness or for a variety of reasons. For others they will require PN for the rest of their lives. If a specific condition improves then PN can be reduced or in some cases patients may be switched to enteral feeding depending on their specific medical needs.
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Will I be able to eat and drink?
This will vary according to your condition. Your doctor may suggest that you eat and drink as well as receiving HPN. In fact you may wish to continue eating and drinking on a social basis, which even if your digestive system is unable to absorb the nutrition may help you to feel included in social activities. Your doctor will advise you whether you are able to do this. This is one aspect that may change from time to time depending on your personal needs. If you are constantly thirsty you should contact your doctor or nurse and oral fluids will not replenish the thirst and may actually be detrimental to you. There are some oral mixtures for patients who want and need to drink which contain sugars and salts, these may be suggested on an individual basis.
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How will PN affect me on a day to day basis?
This will depend on the symptoms of your underlying illness. However many patients say that they feel stronger than they have for some time due to being well nourished and hydrated and therefore more able to cope with life.
Thankfully I was only on this for a short time and I got from it the energy I needed and the hydration I needed to allow my stomach to heal or whatever it needed and we were ready to try and use my RIG PEG again. thankfully it was successful this time (30mls per hour at 1kal per ml )- I am still getting pain – it feels like my actual stomach is bruised and it keeps filling with air – at times I can literally aspirate 100-200 +ml’s of air which is a bit odd.
Whilst in I met 2 really nice nutritionists one was called B and the other was called L both of which you just know they know their stuff and more importantly they clearly give a fuck about their patients and are not mechanical like the doctors can be – anyways L mentioned that perhaps I should be looking at my EDS (ehlers Danlos syndrome) as a reason for these feeding issues and it is a condition which can and does effect every single part of the body. so that’s something I will be looking into at some point.
Also whilst I was in I made contact with my new specialist Head and neck cancer Macmillan nurse NW and she was also great and gets it  for example she noticed before I even said anything that I was struggling to face her straight on as my neck was playing silly buggers! she also made me an urgent appointment to see Mr Fasanmade as I haven’t had an appointment since I moved here and I have a few new things cropped up regarding the cancer/cancer treatment side of things.
I mentioned the neck issues well at times these are pretty severe, they range of a tired ache as if my head is waaay to heavy for my neck, to muscle aches that male my right fingers (think its the pinkie and ring finger) tingle, although I still have movement and strength then at its worst it goes into full spasm and its not pretty my head tilts to the left my mouth is slightly open and my tongue (remembering the right side is just a graft and non functional) gets pulled to the base of the mouth and I’m almost paralysed by this I’m unable to do anything ot talk (well I try but its not understandable) until it passes, which can take up to 20 minutes.
I also have a palpable lump in my neck, we noticed it just before Christmas and have tried not to dwell? fret? panic? about this as we all know it could be nothing but we also know the alternative.
I will update about my appointment later
still smiling as ever
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It’s been a while


I’m still here plodding on, I’ve been struggling with my depression and a few infections but otherwise good.

Recently I’ve been doing a lot of reading about head and neck cancers, the one I had along with others including melanoma as I have a friend who has terminal cancer. Knowledge is power right?!!

I’ve obviously seen the *eat this berry and it will cure cancer* blurb and the *it’s the pharmaceutical companies causing cancer so they can make money*. I give those theories as much credit as I do the *drink your own urine to turn you into a unicorn who poo’s rainbows and skittles* . My next post will be more about what I’ve been reading.

There’s something many people don’t realise, once you have had cancer you’re a ‘cancer patient’ for life, if you were to go to hospital for something completely unrelated you will have to explain about your cancer and treatment. You will see your oncologist/ specialist every 4 weeks for a year then 6 weeks for a year then 8 weeks and so on, although I’m sure it would be different for different cancers and treatments etc. I guess what I’m saying is, moving on, forgetting about it. Not that you can forget.

Like many head and neck cancer patients I have lost a lot. I used to enjoy eating (I was fat) and loved date night with my hubby – we used to love a Indonesian restaurant.  I used to laugh, I used to have friends (this should not be taken as a “I must see Steph now coz I had forgotten she existed before”. I know I’m guilty of pushing people away. I struggle with anxiety and what people may think, and hate adding stress to people, that’s something I worry about. For example if I see on Facebook that someone’s struggling with tiredness or stress at home, I wouldn’t dream of asking them to do something even if they offer.  I would far rather offer to help them. That’s obviously a theoretical but you get the idea.

I still haven’t had my new peg fitted I still have my stupidly small tube that blocks all the time, it’s daft really but G has got his funny way of doing one of my meds that blocks all the time, it makes me giggle because he pulls his concentration face .

I did have a call from speech therapy but it’s not been returned as I need a break. I feel like a child at speech therapy,  it’s just so uncomfortable for me. The only one I ever got on with was in Peterborough but she is more post surgery rather than 2 years, and my speech is good most of the time, my swallow is the same the only change is my ultra sexy new skill, if I’m drinking and look downwards my drink comes out my nose lol the kids can’t help but laugh:)☺. But in the grand scheme of things it’s no biggy.

That reminds me 13th of Feb will be the 2 year mark , since diagnosis.  I’m not sure how i feel about that, the first feeling to surface when thinking about it is anger.  Perhaps this date shouldn’t be marked but the date of my last radiotherapy ie cancer free should be. Hummmm I will have a think.

**I have  just had a thought I’ve had a UTI for 4 weeks or more perhaps that is what’s kicking my arse atm. I’m on antibiotics again but maybe it’s that and I’ve woken up today feeling sooo much more awake. (I wrote most of this a 2 pm and I’m just finishing off now)

Any who’s I hope this isn’t too negative for my first post in a while, but as usual I just write what I’m thinking and feeling at the time i write it.

I’m still smiling 🙂 ☺

I hope that by writing this blog I can help others in similar situations take comfort in the fact that they are not alone. Please help me reach more people with my blog by sharing my posts on Twitter and Facebook. If you would like to follow my story, please sign up to the mailing list so that you can be notified as my blog is updated. Should you wish to get in touch please feel free to use the ‘Contact Me’ page to fill in your details and I will respond to you as soon I am able. Thank you, Stephanie x