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Your so positive….how do you do it?


Now this is something I hear a lot and to be honest I don’t know if I know the answer but I’ll try. (And probably ramble as per usual )

Here’s a few examples of how I look at things.

  • sometime ago I dislocated my kneecap (by rolling over in bed may I add) and it was off to the side and above , it was really painful but rather than waste the day sitting in AnE I asked G to put it back….yes it was so painful it actually made me vomit but this way I still have the rest of my day right?!! So G trys moving it back , and he only managed to move the kneecap across so it’s central but still sitting really high, I was still in a huge amount of pain but I remember saying to G bonus we are at least half way there….G laughed and said *you can find a positive in Anything cant you?

SEEING A NEW DOCTOR

Often when I see a new doctor I have to give a quick summary of my medical history to save time, while im rattling through as quickly as I can, im usually interrupted several times with “oh wow”, I have to say “I’m not done yet”… They ALL WITHOUT exception say…”oh wow how do you cope?” or “you look so well”, and / or “you’re such a happy person etc” . all I can think to say well it could be worse right?? lol and that IS how I feel.. and that’s not necessarily even thinking about the cancer, but for example …. hers my list….

*subarachnoid spinal cyst – surgery in 2012 went well and other than mild weaknesses on right side and some nerve pains from scar tissue…it could have been much much worse, so genuinely feel I dodged a bullet there.

*EDS (Ehlers Danlos Syndrome hEDS with vascular crossovers)- Mine isn’t too severe I can still move about with crutches. But I do regularly dislocate or sublux knees, hips, wrist, fingers and jaw. Few issues with randon vines bursting and whopping bruising..and yes its getting worse the older I get – That said, there are some people who I know who are so much worse off for example a lady I know through Facebook called K- shes a bloody trooper her EDS effects her far far worse but she is an awesome Mummy to 4 beautiful girls and she doesn’t let it stop her. Very much like another lady called Samantha who was forced to raise half a MILLION pounds to go to America for neck stabilisation, as without the surgery (not available in UK) she could have died !!! So I will take my wonky joints and pain and be bloody grateful !!! (Samantha has set up a charity to support fellow sufferers of EDS here is here website and her Facebook group here  its in its infancy but this lady has drive and determination so I have NO doubt it will evolve into something amazing – so keep your eyes peeled for that one. 

*Sacroilitis……ok this one sucks….bloody hurts it comes in flare ups and isnt constantly there (I will add that flares can last months at a time and the pain radiates around the front and down the legs too it sucks)

*PEG FED being peg fed….least I don’t have taste my yucky medication or rancid ensure compact ……blurgh so that’s a BONUS

*Radiotherapy damage! This one is BAD like the rest there is no fix….but unlike others this one messes with my head more than anything else ….it remind me of the Military Padre that supported us  during my treatment he used to just repeat…. “they are making you sick to make up better……”, it was so needed at the time. Although I now know that Radiation Fibrosis is progressive which is a bit of a shitter . That said,  for now, I can still speak I CAN make myself understood….. yes it hurts but I LOVE to talk so its worth it lol. Before I had my big surgery we didn’t know what I would be left with,  if I would have any speech at all and yes I had to relearn how to speak and yes I’ve hit a stumbling block currently – see THIS post ..but again I have managed to find a huge positive – Ive already been through the worst – I cannot have radiotherapy again (due to dose) so the worst bit is over plus I know Sign Language so should I ever need it – its there. OH and IM CANCER FREE ……that’s a HUGE bonus lol 

TONGUE Cancer hemiglossectomy (half my tongue removed, straight down the middle) … I’m so grateful it was not a full glossectomy, or a chin split! In 2013 I had this surgery I had – Half tongue removal as apposed to full tongue removal – finding the positive in that one is pretty easy- but that said I have the privilege of knowing a WONDERFUL lady *A and she had a full glossectomy….she got nothing left of her tongue and she is THE most positive person I know – its off the chart AND she no longer has a feeding tube – that bit seems nuts to me but she is living her best life and absolutely smashing it ! I genuinely admire this lady – shes a real gem. 

*Hypothyroidism (secondary to radiotherapy and unstable), this one is a odd one – when under control / behaving you wouldn’t know you had an issue, but when its out of whack it does throw a spanner in the works, but its been much more stable in the past year so that’s all good. A weird bonus of being on liquid Levothyroxine is the ability to have an exact dose, whereas those on tablets only have a few options – for example tablets I believe come in 25, 50, 100 and 125mg in the UK but I need 120mg – it might not seem like much of a change but its made a big difference – so there we have another bonus

*Reactive hypoglycaemia– this ones new and I don’t know too much about it but its not every day or even week so again could be much much worse

*Collapsed abdominal muscles– yep from time to time they hurt like hell but some big old granny *sucky inny* knickers and a “shaping” vest and Bobs your uncle Fannys your aunt!

Neuropathic bladder with need to self catheters ….. this one is a positive as it cuts down on UTI;s – which is awesome and they’re so discrete nowadays no one would know what they were even if it fell out of your hand bag. Here’ s a picture- and its super easy to do once you know how and not painful I should add! 

 Lateral disc bulge s4 and 5 The doctors think this is the cause nerve pains down my good leg which sucks but remembering what poor G was like when he had a slipped disk – its a million miles from that, he was in bits. So I feel very lucky to not be suffering like that. Thankfully other than one small relapse G is doing great after doing lots of Physio to help with his issue, but is still a tad more cautious. 

*CRPS which is Chronic Regional Pain Syndrome – now this one double sucks but I have coping mechinisms which center around it not being touched which includes wearing a tubie grip over it to stop things brushing over it and my awesome kids know to avoid my bad arm like the plague. Plus  my amzing sister who works all over the world but often from the US  got me some lidocaine pain relief patches which offer some help – I also use these for my sacroiliitis and mid back – so triple thank you Jo xxx

Low BP I suffer from very low blood pressure, but I thike Mum and my sisters do too so that’s no biggy – unless your unwell and it drops more as you don’t have a buffer zone and this sets off

POTS which is Postural orthostatic tachycardia syndrome  not so great….a very simple treatment for those mildly to moderately effected…adding salt to your diet…… I bloody LOVE salt …BONUS…every cloud right?

I didn’t realise that list was so long – but please don’t take it as a moan cause its not – Im all good xx Moving on…..

A few years ago before cancer I was a shout and scream type of mum and would lose my temper regularly, not in a abusive type of way by an means but just a different way. Post cancer I made the decision to be a calmer person in general. I also have tried to be a better wife, and please don’t take that as a 1950s housewife. I mean a better companion, a better friend to her husband. I really do think we are smashing it because of the conscious effort I make.(haha just read that back…maybe G has something to do with it too lol )….that said this hasn’t been an overnight thing, but there are few things that I do, that really help to put things into perspective and has helped me try and be my best me. Please don’t take it as I think I’m perfect I am far far from it and wouldn’t even aspire to it but I’m certainly better than I could be and have been in the past. so maybe in a odd way I have cancer to thank for that ????????

So here’s a list of things I actively try.

  • Take a breath yep! it’s that simple before you say or do something just take a breath it is in that split-second you choose whether to launch into an argument or a shout or just move on or getting upset it’s just gives you a second. To consciously make the choice. rather than a knee jerk reaction.
  • If you find yourself at the other end of somebody being rude or pushing past you or something like that, again pause. Could it be that that person has just had some terrible news? or perhaps they are in pain or they’re rushing to get their child who is poorly?? you never know . You never know what’s going on behind closed doors so just give people a chance. That’s not excusing people who are just being pricks for the sake of it, cause let’s face it some people are just horrible but I don’t think its as many as you’d imagine.
  • This is something I encourage the children to do every single day! make somebody smile today it’s that simple. It maybe just say “good morning” to somebody in the street, it might just be enough to turn someone’s negative day around. And as we all know smiles are contagious.
  • Then there’s my belief of pay it forward and yes I have watched a film and I loved it many many years ago but I mean why not? For example I’ve got a neighbour who, when I was in hospital for all of September and October, made some lasagne for my husband and my children which is super super super kind of her, it meant G didn’t need to think about cooking that night. My daughter absolutely went nuts for this lasagne she loved it, and my neighbour still occasionally ,makes Daisy an individual portion of this lasagne which is super sweet. I chose to pay it forward to a local family who unfortunately were having a bit of a family crisis. I genuinely think we all have a neighbour or friend who could do with a small act of kindness, and from a selfish point of view doing good makes you feel good too.

That all said I do shout at the kids but not often,  and I most definitely have woe is me days and this last week has been a doozy….

I’m only human …but I keep trying to be better and I think that’s the key.

Oh and to Keep 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
Jan 2017

Update 2017 – still battling on


HAPPY NEW YEAR EVERYONE

Well here we are almost at the 4 year mark and we all thought it would be way behind us and we would have moved on with life but unfortunately not!

 

Here’s what going on – we are now living near Aylesbury Buckinghamshire (sounds posh doesn’t it ). The kids are doing great Dangerous D is 5 and as adventurous as ever and loving life and my boy is 11 now and is all of a sudden turning into a sporty thing ! who knew? he’s on the football team the netball team (they have a mixed team dues to numbers ) and he’s wanting to do rugby on Sunday mornings ! bye bye lie in ! haa haa only kidding, we have kids there’s no such thing as a lie in. Hubby AKA “G” is doing really well and loving his new role and he has a fantastic boss who had been so so accommodating.

now me !!! drama all the bloody way ! since September I have had 3 peg tubes that failed (the tube split or the balloon burst or the valve was faulty and it fell out), so most recently Jan the 3rd the peg fell out I followed protocol and went straight to A and E peg in hand and explained – unfortunately they were very busy and it was a few hours till I was seen and in this time the stoma started closing ! we managed to get a mall NG tube in it to keep it open and I was kept over night on a drip as I obviously couldn’t use my peg etc – then it all started to go tits up ! the next day I went to x-ray to have a RIG, I did the usual and said – it takes a lot to knock me out and I have EDS and sedatives and local anaesthetics have limited effectiveness yes-yes they said !  so I woke up halfway through and in my have apparently I was “combative” no shit it bloody hurt !!

righow-to-rig

 

 

when I woke up I was in a lot of pain and not really from the peg ! it was in my shoulder and the only way I could describe it was icebergs erupting through my collarbone it was excruciating the only relief was laying totally flat – which is terrible for my back and thanks to radiotherapy I cannot lift my head if I lay flat it really weird actually its like someone’s holding my forehead down I just cant do it lol, I digress. so I was discharged with new RIG PEG on the 4th and the next day was my birthday 34 years old and I’ve only recently decided what I want to do with my life ! more of that later !

in the morning of the 5th I could barely move and was in lots of pain and my tummy was really big but I painted on smiles whilst I received my gifts and opened them I have some gorgeous smellies including bayliss and harding  and ghost and from the children I got this.

birthdaygiftfrom-kids

anyone who knows me will know how happy I was with seeds an sets – I can’t wait to get planting ! I love seeing the fruits of my labour – literally ! we are trying to make raised bed for as little money as possible and using scrap etc (do not thing steptoe yard) it will look beautiful!

so on the 5th I ask Gary to take my discharge notes to the medical centre and I had written a note on there as there was very little information on the discharge summary (it even said I could walk unaided and had no risk of falls lol) anywho my doc, Doc P called to see how I was and by this time 2.30 ish I was in more and more pain. The doc asked if I felt like I had a temperature and I shrugged it off saying no, but he insisted I take my temp 39.9 OOOOPS – he said get to the hospital NOW as I could be going into sepsis — I was in too much pain to get into the car so we had to an ambulance and my numbers weren’t great and they had the usual issues with canualtion and also my sats were low and my bp was in the floor 60 over something ! they gave me gas and air for the pain – GOD I LOVE THAT STUFF and off we went to A and E where I spent a few hors while I received emergency treatment for sepsis I has 2 different antibiotics  and paracetamol for the pain and lovely morphine oh and a drain bag on my (so all the acid etc. was coming out rather that leaking into my abdomen). once I was stable I was put in the walk way as there was no cubicle available so essentially I was in a corridor on a trolley ! nightmare I was hooked up to drips and all over the place, scared and alone. I had my phone in my bra strap near my collarbone and I was in and out of sleep as it was the early hours – I was occasionally woken by people adding drips and or taking me temp and blood pressure – then all of a sudden we were moving we were off to a new ward when they initially I thought I was again going to be in the corridor but there was a bed space available, that when I realised MY PHONE WAS GONE – I hadn’t physically moved so I can only surmise that someone took it! talk about panic and i was heartbroken ! the nurse who wheeled me up ran down to A and E and even went through the laundry bag and there was no luck it was gone! I couldn’t believe it! on top of everything!

 

For the next 11 days I was visited daily by a surgeon who would decide if was suitable for surgery or if they could continue with antibiotics – thankfully I avoided surgery by the skin of my teeth and the medication – tazacin ? and doxycycline? I think they were called seemed to do their job. for those 10 of those 11 days I had nothing in way of nutrition and only had saline /potassium and magnesium infusions!   they were desperate to put me onto TPN (vein feeding) like I had last year but I refused point-blank as I wanted to get home, I didn’t mince my words either ! once we were confident my bowel had healed/ there was no leak we started using the peg, initially I just vomited it up but at a love speed 20mls per hour I tolerated the feed ! but that was only  200 calories in 10 hours so they said I could go home if I made it to 30mls per hour without vomiting, I managed with the help of cyclzine. If I’m honest I’m still pretty dry and not weeing much so I am trying really hard to drink more but its hard you know  after 11 days of starvation your stomach shrinks.

 

anyhow I do now have a working peg it a bit infected and gunky atm so the medical centre are dressing it regularly for me and doing a great job. you know I cannot complain about the medical centre they all go the extra mile and have looked after me so so well in the past few months (I think the fact I bake them cakes helps.)

 

Tomorrow I will give you an update on the cancer care side of things or lack of care – in short, I went from 6 weekly check ups to a 7 monthly check-ups. and i threw my toys out of my pram.

 

 

 

 

 

 

 

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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