To Boldly Go…

Another week and another issue, this time connected with food and my ongoing issues consuming it. Although my swallowing isn’t too bad, it’s my chewing that is letting the side down. It took me an hour to eat three fish fingers, some mashed potato and half a tin of baked beans. As the week went on, the times grew longer and longer as did the gagging and general throwing up. All not very pleasant especially for my husband who didn’t want to leave me on my own while eating, in case I choked.
To supplement my limited diet, I have been prescribed Fortisip. To the uninitiated, Fortisip is a food supplement in liquid form. You get in bottles which are either juices or milkshakes. I found a service that could deliver the Fortisips straight to my door rather than faffing at the GP. Brilliant. Or was it?
Not quite. I had to negotiate that well known blockage that is the GP receptionist to set it all up. After three visits and the production of two types of photo ID, it all finally got set up and the Fortisip arrived promptly. After a lot of under breath swearing from the husband.
Then on Friday something unexpected happened. Mr Salivary Gland called. I croaked that my speaking wasn’t too good and thrust the phone to my husband. The first genetic test was in and it was good and bad news. The good news was that the tumour was secreting an inhibitor that there were drugs for. The bad news there weren’t any trials for that drug at the Christie. However, this was just the first test. There were five more genetic tests to go. The next one, named the Star Trek 2 test, would show results in about two weeks time. All the tests have geeky names because basically the people who are conducting them are out and out science geeks. I’m due to have one called Sonic the Hedgehog. That gives you some idea of the geekiness and the age range of the researchers doing the tests. Not that I am complaining.
Over the weekend, my eating got worse. We arranged an appointment to see a dietician to discuss options. Finally, a decision was made. Next Friday, I am going to have a feeding tube fitted. It’s not a permanent solution, but one to help me out now. The actual procedure only takes forty minutes. They’ll insert a tube into my stomach from which I can pump liquid food directly into it. I can do this whenever I like and even carry it around with me and pump as I go as it were. Obviously, this isn’t great but anything that can stop the anxiety I feel about eating and stop me from gagging and throwing up, must be a good thing. So, with all this going on, we wait patiently for what Captain Kirk and his Star Trek 2 will bring or if Sonic has a more golden coins to help resolve all this once and for all.

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Here we go again…

 

Another week, another online food delivery.  This time there was no problem on the food front.  No substitutions necessary.  No, the problem was the chatty delivery man.

“Beautiful dog. Retired racer?”

Normally I would launch into my usual diatribe that yes, she’s a retired racer.  In fact, she’s Irish as she has tattoos in both eyes.  She wasn’t a star racer, nor was she rubbish either.  Seconds and thirds mostly.  No greyhounds don’t need much exercise.  As a breed they are quite chilled really and so on.  Instead I croaked “Yes” and that was that.

The joy of a paralysed left vocal cord was that we unpacked the rest of the shopping in silence.  I signed the hand-held gadget thing and off he went wondering what a strange lop sided, mute woman I was.

Monday at nine o’clock and Superhusband sprang into action.  Someone finally picked up in pharmacy and confirmed my drugs were there, ready for the taking.  We were just about to open the front door when there was another phone call.  Urm… yes, the tablets were there but not the injection.  Injection? That was the first time that had been mentioned.

While Superhusband was trying to find out about this injection, my oncologist’s registrar called me to give me the insight on the injection.  I was to take three tablets.  Then on Friday I was to have an injection as well as a tablet.  The injections would happen every month.  The injection would take place in Oncology Outpatients and she would book me in with a nurse on Friday.  Brill.

I relay this to Superhusband after he had finished berating a pharmacist.  We decided to go and get the tablets anyway.  I could start them tomorrow and hopefully the injection would surface by Friday.

After about a five-minute wait in pharmacy:

“Emma Read!”

Close enough.  We went through how to take a tablet when he produced a box containing the injection.

“Do we do this at home?”

He shrugged and sent us on our merry way.

Confused and unsure what to do, we went to Maggie’s, a cancer support centre located on the grounds of the hospital. We told our predicament to one of the cancer support nurses there.  On inspection of the injection kit, her advice was that a qualified medical profession should definitely administer the injection.  Not us.  After a much needed coffee and chat or rather croak on my part, we went to Oncology Outpatients and booked in with a nurse to deliver the injection on Friday. Phew.

Tuesday and the first tablet.  I swallowed it no probs and…felt the same.  Well at least my head didn’t fall off. Wednesday and I had an appointment with a speech and language therapist.  It was a good appointment.  As my left vocal chord was immobile, it no longer fits cleanly next to the right one.  This means that when I swallow liquid, a residue ends up going down my wind pipe.  So, she prescribed me some thickening agent to make liquids thicker and easier for me to swallow.

She couldn’t really help me speech wise which is the one thing that has overtaken my eating issues as the thing that is driving me bonkers.  So much of my old life relies on me speaking.  I feel at times that I’m in a big supermarket and that my old life is on a high shelf, just out of reach.  I try and try, and grab hold some aspect of it, but it’s always just out of my reach.

Still there are some things I can do.  I am generally mobile and can walk my dog.  On a walk, my husband was relaying to a fellow dog walker my predicament.

“Blimey! Sounds like you need a head transplant!”

If only, if only.

Friday aka Injection Day rolled around.  As it was with a nurse, we were called through bang on time.  She read the instructions that were written in teeny tiny writing on a folded piece of A3 paper. In the end she collared another nurse, who had administered the drug before, to guide her.  It was all very painless.  Both my husband and I enjoyed seeing the banter between the nurses.  It was something that we had been missing was that banter between work colleagues.  So, we decided that my husband should return from his self-imposed, unpaid leave from work.  We both needed space to plan our next move.

Superhusband

It all began to go wrong when our online food shop was delivered.  I had ordered a box of a dozen eggs on the notion that eggs are a good source of protein which is what I needed right now. Unbeknown to me, my husband had thought of the same thing and had also bought a dozen of eggs.  We had eggs galore.  Simple. Omelettes all round chimed my husband.  So, come Monday evening we were both chowing down on our respective omelettes.

It all went wrong during the second half of my omelette.  Basically, there was no second half because I threw up the first.  And so, Monday night developed into the night from hell.  Come Tuesday morning we were both washed out and drained.  I also couldn’t speak, I had a GP appointment in the afternoon so we both rested, and I finally began to keep food down.

The GP appointment went as well to be expected and he gave us a prescription for a whole load of Fortisip food supplements.  I had an appointment in ENT the next day to see Mr Q, the facial reconstruction plastic surgeon.  We could raise the matter of my speech and sickness then.

Wednesday came and in ENT we were informed that Mr Q’s clinic was running an hour late.  I was feeling a lot better and keeping food down, so we braved a visit to the café.  I still couldn’t speak clearly, and my right eyelid drooped badly so my husband had to do a lot of guiding and interpreting.  We finally saw Mr Q.  He looked a bit shocked.  He called the registrar of the lead Head and Neck surgeon at the QMC to see if he could advise.

We were whisked into a side toom where we were met by a jolly, young registrar, his pretty med student who was hanging on his every word, two nurses and Bindi, the ENT cancer specialist nurse.  I thought he was really good.  My husband thought he was a knobhead trying to impress his med student.  He checked my airway.  That was patent which means that it was clear. He confirmed that my left vocal cord was now paralysed.  That’s why I couldn’t speak.  He mentioned that he had been on the medical team that operated on Professor Stephen Hawking when he lost his vocal cords.  Bit of weird name dropping there, maybe designed to impress the med student. My husband informed him all about the Christie, Mr Salivary Gland and my change to anti androgen treatment.  The registrar said he could speak to Mr Salivary Gland, my oncologist and book me in for me to see his boss in clinic next week.  We could discuss what to do next then.  He also gave us his details, so if the situation got worse, we could get in contact with him and get it sorted.  Sweet.

When we got home, my husband knew I was getting worse.  I needed to start the new treatment asap.  My sister had emailed my oncologist asking why I hadn’t been put on the new treatment.  She got a reply telling her off for emailing but also saying that an application had been made to the IFR team for funding approval.  After a bit of Googling, my husband found the name and number of the woman in charge of the IFR team.  He called her and explained the situation.  She was a lovely lady called Anthea.  Anthea explained that she looked at all the applications.  If it was straight forward, she would approve it.  If it was complicated, she referred it onto a consultant.  They would either approve it or refer it to panel.  She said that she would look at my application first thing tomorrow morning. Great.

Thursday rolled around, and my husband was a man on a mission.  By the end of the week, he wanted to achieve two things. The first thing find out what the hell was going on with my tumour sample and make sure it was on its way to the Christie for testing.  The second thing was to make sure I started my new treatment as soon as possible.  He started the phone calling at eleven.  He finished his phoning at three in the afternoon.  All this time was spent locating my tumour sample.  Finally, thanks to some last-minute intervention for the Prof, we found out that the tumour was in Nottingham and even the name of the doctor who had it.  We passed all this information onto the Christie and hopefully the tumour sample is winging its way there.

On Friday, we took a deep breathe and my husband called Anthea about the funding.  Anthea had tried to call on Thursday but couldn’t get through because of all the phoning that my husband was doing to find my tumour sample.  Anyway, what she said next floored us.  She had received no funding application.  Dumbfounded, my husband kept it together well and phoned my oncologist’s secretary.  No, it didn’t go for funding, the application was with pharmacy.  So, he called pharmacy.  The person dealing with my application was annual leave at the moment.  At a lost, my husband called Anthea again and explained the situation.  She said she’d call pharmacy.  True to her word, she did, and we got a call from my oncologist’s secretary saying that they were waiting to hear from the Christie for confirmation of the dosage.  That came through and finally we were told that my new treatment would be ready in pharmacy by Monday afternoon at the latest. 

Hang on.  What about bloods?  Turns out the anti-androgen treatment is in tablet form so no needles! Hurrah!  But what about the side effects?  After a quick Google, as it’s used for prostate cancer, one common side effect is erectile dysfunction. Can’t see that being an issue!  More Googling and good old Wikipedia had a section on anti-androgens side effects on women.  Apparently, they are used for women who have acne, too little hair, too much hair or having gender reassignment treatment.  The side effects didn’t look too bad and apparently are worse in men than in women.  All in all, not too bad.

So, bring on the anti-androgens!  As for my superhusband, words fail me.  The way he dealt with everyone on the phone was amazing.  He wrote a time line on who he spoke to, when and what about.  I feel so blessed to have him fighting on my side.  Without him, I’d hate to think where I’d be.

The I – Word

As the end of the academic year approaches, I’ve had to pop into work. Every student who completes an exam has their name inserted in the all-important claim spreadsheet.  As I left in rather a hurry in May, I had a sneaky suspicion that although my students’ names were entered, their outcome, if they passed or failed, may not have been.  So, I needed to pop in to ensure that this all-important spreadsheet was present and correct.

Although I was looking forward to catching up with my fantastic colleagues, I was approaching the day with a heavy heart.  Being at work seems a lifetime away. I was bound to get emotional about it.  I was also going to take a mental note how many times I would hear the word inspiration or inspiring.

I’ve been having a problem with those two words as I don’t feel either in any way.  When someone says this to me, I have no idea how to respond.  If I say well yes, thank you of course I’m an inspiration, I sound like a complete knobhead.  Yet if I do the opposite and contest it, it makes the person who said it feel awful and once again you look like a knobhead.

I’ve never been good at compliments at the best of times, but these two words do leave me speechless.  I remember reading about the para athlete Hannah Cockroft taking issue with some BBC reporter about it.  I couldn’t find the interview, but I found a great outlook on it by another para athlete Richard Whitehead.

I’ve seen Richard Whitehead.  A couple of years my mum and I volunteered to be happy clappers at mile twenty-five of the London Marathon for Macmillan.  It was a great day, standing on the London Embankment in the sun, cheering away.  Most of the runners by mile twenty-five were in a bit of a bad state, quite understandably.  However, when Richard ran by, he was as fresh as a daisy.  Richard has both his legs amputated above the knee.  This means that he doesn’t wear the blade type prosthetics but ones that are completely solid.  To see him breeze by so easily was …well… inspirational.

Richard believes that if he can inspire people to do things, then he’s happy about being called inspirational.  I can see this point of view.  Yet I can’t see how I am an inspiration.  Richard and Hannah work hard and do something.  At the moment, I am doing nothing.  I am just ill and getting on with my life the best I can.  However, something happened a couple of weeks ago that made me question this.  My story was published in the Maggie’s Centre in house magazine.  A woman I had never met before, read my story and told me that after reading it, she plucked up the courage to go and get a second opinion about her cancer.  So, if in a little way if I can inspire people to ask more questions about their lives and how they live them, then that is a good thing.

Lead, Follow or F*** Off

 

My husband is a man of few words.  When he does speak those words tend to be of the Anglo Saxon variety.  While talking about how others  should react to our current predicament, he summed it up pretty well.  They should either lead, follow or f*** off.

Fortunately most of my family and friends fall into the second category.  The support we have received has been so immense that I can get quite emotional about it.  No one has entered the third category which I know isn’t the case for some people living with cancer.  However there is one person who is firmly in the first category. She has led the way throughout this whole ordeal and that’s my sister.

When you look at me and my sister, you can tell we are sisters.  We have the same hair, eye and skin colouring.  My sister is petite and sporty looking while I am taller and a bit chunkier.  We share the same sense of humour and on the whole we have always got on pretty well.

How we differ is in our outlook on life.  I’m quite laid back on the whole and take a general que sera outlook on the world.  My sister questions everything.  Why are you doing that?  How did you get here?  Why don’t you want an ice cream?  It goes on and on.

My sister is far more scientific and logical than I am.  She studied physiotherapy, stayed at home and got a good, steady job as a physiotherapist.  I studied Politics, went 150 miles away to Leicester Uni, got drunk quite a lot, taught abroad for a couple of years before somehow landing in Nottingham and getting a job at a Further Education college teaching English as a Second Language. Yet she has saved my life twice.

The first time was when I had a nagging toothache and earache which the antibiotics from the GP weren’t doing anything for.  She kept pushing and pushing until finally I went to see Mr C privately and eventually got diagnosed.  I’ll never forget her first encounter with Mr C.  She was six months pregnant with my nephew at the time.  Mr C smarmed into the room where she proceeded to interrogate the life out of him.  You could see he was wondering who on earth this slightly manic pregnant woman was.

The second time she saved my life was when I had my first reoccurance.  The news knocked us all for six.  My husband and I went on a Caribbean cruise during which I reached some kind of acceptance of the situation.  I started to think of plans and made a will for the inevitable to happen.  But my sister refused to accept this.  She managed to organise an appointment for me to see one of the best brain surgeons in the country.  It was a nightmare trying to get scans, blood work and other stuff all together in a matter of days,  Somehow it all came together.  The conclusion?  Although an operation was out of the question, he would pass my notes onto the Royal Marsden.  A couple of days later I had a call from my oncologist.  They were prepared to give me a second round of radiotherapy thanks to the intervention from the Marsden. This meant that when the cancer reoccurred again a year later, we knew to go straight to the Marsden.

I have learnt a lot from my sister.  I now take control over everything to do with my cancer.  I get scan reports, histology reports, everything.  Although you are powerless over the disease itself, there are some areas you can control.  I feel very lucky to have my sister constantly questioning everything.  It can be irritating at times but you know it’s for the best.  When my letter from the Christie came through, I popped down to see my family and watch the football.  I showed my parents the letter but halfway down on the A3 to her house, I realised I had forgotten to take the letter to show my sister.

“Don’t mention it to her.” advised Dad.

As soon as we got there and I had a cup of tea in my hand.

“So let’s have a look at this letter then…”

Rumbled.

Snakes and Ladders

 

Then you realise. The eye, the mouth. That was all a distraction. It was a Friday morning and I had just finished hoovering. I had my treatment today so I was tidying up for the nurse. The phone rang. It was my oncologist. My scan results were in. It wasn’t good. I managed to keep it together on the phone. Just. When I hung up it all came out. Not again. I was going to have to go through it all again.
I called my parents. Again I managed to keep it together quite well. They were going to come up with my sister. Phone the Marsden was the message. I phoned the Marsden. My oncologist had said she had written to them. We needed action now. The Prof’s secretary didn’t work on Friday so no appointment could be made. I would have to wait over an agonising weekend before anything could be done.
The nurse arrived. I asked my oncologist whether it was worth carrying on with my existing treatment. She said yes as it might slow down the growth. The nurse got the brunt of it. However she listened, gave the treatment and went. That’s all I wanted. Someone to listen.
My parents and sister arrived and we had a lovely weekend together. Monday came around and bang on nine, I called the Marsden. The earliest appointment was in three weeks’ time. My parents and sister were hoping for it to be earlier. I wasn’t too upset as it meant I could tie things up at work. The secretary said it was worth calling later on in the week in case there had been any cancellations. Worth a try.
My parents and sister went home and I sent yet another dreaded email to work explaining the situation. The response was amazing. I had reduced my teaching hours because the problems I was having speaking, so it was quite easy to have an extraction plan. I met with my manager who was extremely sympathetic. I made a promise that I would definitely be back for September. Although a few tears were shed, it’s a promise I will keep.
On Wednesday I decided to test the secretary’s word and call to see if there had been any cancellations. There had and my appointment was brought forward by two weeks. At last a chink. The following Tuesday I had an appointment with my oncologist. She wasn’t there so I was seen by a dumb struck registrar who didn’t know what to say. I asked if it was possible to have my scan.
“Here.” She handed me all the notes that she had about me and the scan. It was all gobbledegook to me but at least it was something. She also told me to speak to the data department within the hospital to get a CD of my scan. I thanked her and did just that.
D Day arrived at the Marsden. The Prof was there and as ever was fantastic. We gave him my notes from the registrar and sat waiting for the verdict.  Radiotherapy was not an option because of the way the cancer had spread. The only option to kerb it would be chemical. There were no trials at the Marsden currently due to the rarity and location of the cancer. However the Prof knew a man.
There was a doctor at the Christie Hospital in Manchester whose speciality was salivary gland cancer. He was looking at the genetics of the tumours and developing drugs connected with those genetics. He was going to refer me to him so that my tumour could be tested to see if it was suitable. If not, another round of chemo could dampen things down a little.
My mum is from Manchester and I have two cousins who live near there. If it had been any other city in the UK, we would have been stuffed. We shook hands trusting the Prof to keep his end of the bargain and secure the appointment with Mr Salivary Gland in Manchester. The waiting game had begun.

Shout! Shout! Let It All Out!

“It’s not fully closed is it?”  My husband was looking into my eyes but it wasn’t sweet nothings he was whispering.  “You need to go back to Eye Casualty.”

As I was descending the stairs down to Eye Casualty, someone prodded my shoulder.

“Ayup! Back again!”

It was one of the nurses who was on the ward when I was admitted.  I got the same reaction from the receptionist and the sister in Eye Casualty.  After a three hour wait with a prisoner, which caused a flutter of excitement, I was seen by a very efficient doctor.  He gave me gel as opposed to drops and told me to come back on Friday.  Double sigh.

Friday dawned and it seemed not better nor any worse.  It was the same receptionist as Monday.  We chatted a bit about the wait times.  I told her how amazed I thought the doctor was, taking time to assess me properly when he knew he had a room full of patients outside, champing at the bit.

“We take the same time as we always have done.  It’s just that the demand is so intense, we don’t have the staff nor the resources to shorten the wait times.”

It was quite refreshing to hear this.  I don’t think that is the case for all hospital departments nor patients.  This week a shocking report was released about people with learning difficulties.  The main finding was that this group of people’s life expectancy was thirty years less that the rest of the population.  Part of the reason was because the issues involved in the patients and their families had in communication.  There were some shocking case studies.  One poor lad died of constipation because he couldn’t communicate what was wrong.  Another more famous case was that of Colin Sparrowhawk.  He drowned in a bath because inconsistency of care.  Yes there was a report and recommendations but nothing gets done.  In fact it’s probably worse.

While I was in hospital, I ran out of water.  When the nurse eventually arrived I timidly asked for some, knowing how busy she was.

“You need to shout more loudly, duck.  You won’t get anything in this place if you don’t.”

She’s bang on.  You need to shout about for just about everything.  But what if you can’t shout?  What happens then?