I have to start with the fact that I feel absolutely fine. My hair has never been so well conditioned and all the drugs they give me to prevent side effects from the chemo have worked. No tingly fingers or sickness or a multitude of other possibilites. And I’m far too excited to feel tired, despite Neil’s protestations for me to rest.

On Tuesday my friend Jilly dropped me off for chemotherapy and returned laden with shopping. Oh dear, being my taxi driver can get expensive!! Thanks Jilly. I used the chemo session to plan the seating in the marquee on my laptop. 

Cara has arrived from London and came to radiotherapy with me this morning. They showed the her the huge machinery and she watched the screen with them as I was being zapped. We were home by 9 to get on with our day.

We are full steam ahead for the wedding on Saturday. The marquee is up and we have the huge job decorating it. Marc’s girlfriend Sarah got up at 3 this morning to buy the flowers from New Covent Garden in London and is now on the road to deliver them and start her mammoth task of making a multitude of arrangements. Marc’s presenter on Radio 1 has just made a ‘shout out’ for Sarah on the road and for Neil and me for our wedding. I can send you the BBC link if interested. He’s arriving tonight to join us with Tim and Hannah for a barbecue. The sun is shining!

We have a wedding rehearsal at 3 and American friends are popping in at 6 to say hi, which is great as they’ve not met Neil before. Friends are coming from nearby to help with the marquee today and the flowers tomorrow.

So thats it. Next time I come back I’ll be a married woman and a very, very happy one. Neil’s the best thing thats ever happened to me in my whole life, except for my children who are the best kids ever. All I had to do was drive an old car to The Gambia, zigzagging the Sahara and driving through a minefield in Mauritania, to meet the man of my dreams. Easy!

 

Chemo/rad day…. (the laugh is at the end)

Its 1am and I can’t sleep so here I am after my first chemotherapy plus radiotherapy day. Neil left long before I woke up and left me a beautiful note. This morning he swam 60 lengths at Tiverton pool before work, reducing a further 1.5km from his 100km target, then he went to work until lunchtime, then on to Bristol to pick up his daughter Tessa, then on to Heathrow to collect his son Tim and girlfriend Hannah who’d flown in from Australia. The wedding is starting and its getting exciting!

Toni drove me into Exeter and we entered the Cherrybrook ward where they give the chemo. It’s so easy the second time as I knew exactly what to expect. In order to increase the blood supply to my veins to help find a decent vein to insert the cannula, I have to soak both hands in really hot water. I mean REALLY HOT!!! I’m a total wimp getting into a hot bath and this was no different. Slowly I immersed my hands, neither bravely nor quietly! We all giggled at my patheticness as the veins in my hands grew strong and bold. The nurse inserted the cannula and hooked me up to a saline solution then the pre chemo meds and on to the chemo.

I’ve decided to rename the cold cap the Ice Cap which is far more descriptive of its function. Before fitting it, they ask me to wet my hair and put on some conditioner to help it slide off at the end of the treatment. Last time I did this on my own, before the cannula was inserted, but today I had to ask Toni to help as I had only one hand free. We both went into the toilet at the corner of the ward, I leant my head over the tiny wash basin, and she started emptying jugs of cold water over me. It was FREEZING!!! Every time she poured a cup of cold water over my head I screeched and the 2 of us ended doubled up in hysterics. We crept back into the ward rather sheepishly to see everyone smiling at us.

They yanked the cap down hard onto my head according to my instructions to be as tough as they could to preserve as much hair as possible during the chemo. I warned Toni I’d need to go into my zone for about 20 minutes when she couldn’t speak to me as it worked so well last time. I’d close my eyes and get myself into a kind of trance as the fluid in the ice cap freezes tightly around my head. Somehow I can ignore the ice freeze headache, which subsides after a while. I guess the pain is eventually numbed away by the ice against my scalp and I’m fine for the rest of the process. Toni and I caught up with years and years of family history…. our Mum’s throat cancer, our families, our great kids, Toni’s grandchildren and the next wedding as Toni’s daughter Jane is getting married in December. We’d introduce ourselves to other patients coming in for treatment and chat to the nurses if they has a spare moment. There is never a single negative word from anyone in this ward.

Many conversations later, the chemo was over. We waited a further half hour for the ice cap to thaw then I took it off and we bid our farewells. We were 6 in the ward today and 3 had oesophageal cancer, possibly more as we didn’t ask everyone. Is this the big new cancer? I hope none of the other patients have mother’s called Deirdre!!

My second radiotherapy session was so much easier and so much shorter than the first. I wasn’t even in my zone before they came in to release me. Apparently the first session is always the longest as they scan the whole area again, like a CT scan, to gain the latest pictures of Deirdre and plan their attack. Soon I left the Star Wars room full of beans.

Now B&Q is literally on our way home! Oh dear. How can I resist? And Dunelm is next door! This chemotherapy is working out a little more expensive than we’d anticipated!! I bought some great solar lights for the bases of the guy ropes of the marquee just in case some guests enjoy a little more than just one glass of champagne! There are so many doctors coming to the wedding there’s bound to be trouble!!!

Toni and I had a relaxing evening at home and went to bed just before Neil, Tim and Hannah arrived at midnight. I was still awake and talked my poor, very tired Neil to sleep, then came down here to write this blog. The Dexamethasone steroid is still in my system so I’ll be awake for a while. I’d rather not take a sleeping tablet at this stage as it’s only one night. I’ll need them later I’m sure.

This next bit is not for the fainted hearted:

I wasn’t sure whether to include this next episode, but its 1.30am and my mind is still full of ideas. Billy Connelly is far more adroit at addressing the subject of bowel movements than I, but it has become an issue.

During my ‘forgetting to take tablets’ phase, I became really constipated, like never EVER before! And I do have history on this subject. Last Monday evening I left Neil and Toni for almost an hour trying to perform and failing miserably. By the end I was a little downcast and totally exhausted. Is this the real start of the hard stuff?(pardon the pun) Neil assured me they could help me today, so I ‘parked’ the discomfort for the night and enjoyed the rest of the evening with them.

I told the nurse this morning and she asked what I’d taken. I immediately fessed up that I kept forgetting tablets and continued with the anti sickness drug they’d given me….. but I was taking the wrong one. I was taking the one which caused constipation, not the weaker one which didn’t. Oh dear! But, as with many medical problems (especially in France),  there is an easy solution. A pessary!

I’m afraid this news sparked even more hysteria between Toni and myself as we recounted all kinds of revolting toilet stories. Soon we were both crying with laughter again.

Have you seen Billy Connelly’s comedy on this during his prostate cancer treatment? Its absolutely hilarious. He talks about gallons of s**t cascading from his rectum, setting his a*s* on fire and needing an icebucket to extinguish it.

I have to admit I was almost s*****ing myself already before even starting, so I changed into some loose black clothing and prepared for the worst.

Now…did you know that Neil is determined to save all of God’s living creatures? He saved the rampant mole last summer who created Picasso-esque shapes in our lawn. He saves every spider determined to put the fear of God into me, and he has saved the hornets nest right outside our bathroom window for a second year.

So there am I, poised in position, pessary inserted, nervously awaiting the worst when I realised that, come the moment, I couldn’t even open the f****g window for fear of a whole nest hornets flying straight up my arse (apologies for references to Billy Connelly’s dictionary)

The event came and went in the most natural and ladylike manner. It was nothing like Billy Connelly’s episode and to my relief (yet another pun) I was able to relax this evening in comfort with my lovely sister. The wonders of glycerine will comfort me forever!

Night night xxx

 

 

 

First Radiotherapy

I’ve had a good week, or a bad week in one respect.  I kept forgetting to take my tablets as I keep forgetting all about Deirdre. I love it when friends pop in for a coffee and I’m always so busy with the wedding that Deidre is a distant blip on the horizon. For some reason this week I decided to polyurethane half the wooden furniture tops to protect them from water stains. Deirdre is spurring me on to get all sorts of domestic stuff done while I’m able.

Forgetting to take the tablets reminded me how effective they are. I’d start to feel a little queasy as my body was building up to expunge the chemotherapy drugs, but as soon as I took the tablet, it would settle. I also forgot take the steroid tablets at the designated times earlier in the day which would allow me to sleep at night, so I would go to bed so buzzing with energy. I’d have to get up and tick off a few more items off my wedding spreadsheet, but I did end up shattered later in the week. I’ve resolved to become a much better patient this week.

So…….radiotherapy every day for over 4 weeks! Hmmm! I’m being fried! My dearest sister Toni drove up from Dorset to stay a few days to drive me in. At least it frees up the phone at home as we can generally talk for hours. Now that I’m in treatment, parking is free at Exeter RD&E and we can park very close to the oncology centre. It all went very smoothly as the roads are empty with the school holidays and my sister chatted away merrily to the patients and partners in the waiting room.

Radiotherapy is a bit like experiencing a Star Wars theme park. I lay stretched along a long narrow bed in a large darkened room with my arms fixed above my head staring up at the barren ceiling. The nurses either side of me gently moved me into position using my tattoos and green laser lines to line me up correctly. Since they are going to deep fry Deirdre, they must get it spot on as there are other rather useful organs lying close by, namely heart and lungs! When I think of collateral damage, I used to think of American bombers making mistakes, but now I want my heart and lungs undamaged if at all possible, so I spent the whole 20 minutes not moving a millimetre.

A huge metal disk over 2 foot across rose up the side of me like a some menacing spaceship positioning itself to fire. It creaked and groaned its way into position as the rest of the machinery in the room whirred and hummed around me, beeping occasionally with lights flickering various signals. I stared straight up at the green laser cross of light directly above me. I barely breathed. Obviously I couldn’t see any x-rays, but as time went on I started having to swallow mucus forming in my throat. It was a little disconcerting as I didn’t want to move, but this reflex will increase as the treatment continues, so I might as well get used to it. Fluids build up in my gullet and I just have to swallow them down.

Finally the nurses came back in and it was all over. I was relieved, but not in any pain. For a few hours afterwards, I could feel a strange sensation in the area they’d treated, as though it was tender, but it wasn’t. I was tired going home, but then I hadn’t slept the night before as I designed the seating plan for the wedding. Today I felt like a real cancer patient for the first time as I’m firmly in the system now. But that’s good as the fight it on. I WANT treatment every day. I WANT whatever is is they need to throw at me. I WANT Deirdre GONE!!!

Toni drove me back to Neil’s surgery on the way home as I needed a blood test before chemo tomorrow. Neil was there working as a locust (giggle…I meant locum..Neil spotted it)  so we caught up with our morning, I had my blood test, and then we headed home. I was tired for a couple of hours as Toni and I sat in the garden chatting. But then normal life resumed as I had to talk to the electrician who’s wiring up the hot tub tomorrow. I wish I could be home to make sure he understands our requirements, but alas… The next chemo beckons.

 

 

 

First chemotherapy

Day one of chemo! I found the whole process really interesting.

But first I must start by saying how warm, friendly and fun the staff are. There’s a lot of laughter in the ward and not a single grumpy patient either.

I have chosen to wear a cold cap during my chemo treatment as I am trying to preserve my hair for the wedding. They squeezed a very tight plastic cap onto my head which fills with a gel which freezes the scalp. The idea is to stop the chemo reaching the hair follicles to prevent hair loss ( fingers crossed). On top of that they squeeze on another scull cap, a bit like Jack Knowles’, ( Exeter and England rugby player) to hold everything in place. The strap sits very tightly across my chin. Neil looked at me for a while with a pained expression showing  he was hiding something. When I quizzed him he burst out laughing and admitted that he thought I looked like a hamster.  Honestly! But he was right with my puffed up cheeks and we both ended up laughing. Then as my head started to freeze, the rest of me heated up with a great big hot flush and the laughter continued. The nurse hadn’t seen that one before!

The ward had about 6 patients in very comfortable chairs with another comfy chair for a friend. It would be easy to chat away with others, but it was quite nice just sitting with Neil, chatting and getting on with emails etc. There’s plenty of tea and coffee available all day.

It’s all so clever and technical these days. I have a machine next to me with the drips being released into my system at a measured rate through a cannula (new word!) into a vein in my hand. Highly skilled nurses set it up and monitor everything. Neil remembers the days when doctors had to do all this and count the drips per minute to estimate the time it would take to administer the treatment.

At first the cold cap gave me a bit of a headache, rather like a migraine forming, but soon I got used to it. I was the only hamster on the ward but I didn’t care. The others aren’t going to be walking up the aisle in 3 weeks (I’m so excited). The only problem was that I had no ears and my glasses didn’t fit over the cap so I looked rather like a drunk with my lopsided reading glasses constantly falling off.

After about 4 cups of tea and coffee I realised I had to go to the loo. But how? My cap was attached to a long tube attached to a big box and my arm to the drip on its stand. I waited and waited until there was no choice in the matter and asked. The nurse simply unhooked the head part and I walked to the loo wheeling the drip along with me.

Only the drip line got wound around the drip stand and soon I was laughing and twirling around the ward looking like a drunken Martian. The hysterics didn’t help either and soon the whole ward joined in.

The loo part was an interesting dilemma in itself.  I had to hold the hat tube upwards in one hand and the drip stand in the other. I suddenly felt huge respect for the men.

After about 4 hours it was all over. They let my cap warm a little before taking in off and I could feel the ice in my hair. Good! as I hope it works and I feel absolutely fine.

Chemo’s not so bad. I feel relieved that the process has finally started.

Round 2 next Tuesday, radiotherapy next Monday.

These photos were taken at the end of the session. I’m fine!!

I just thought i would pen to paper so to speak to support Ceri as she starts her Chemotherapy tomorrow and then starts radiotherapy  the next week. Ceri is already suffering my uprated cooking which has resulted in Ceri putting a bit of weight.It would be insensitive in the extreme to say how much but it will be good to have that in the bank so to speak when the onslaught on Deidre starts in earnest.Writing the blog today also gives  me an opportunity  to just give to and out praise to the way she is taking this head on . Not a moments pause for introspection or ‘why me’. As if to exemplify this we went on a 7 mile walk on Saturday up yo Clayhydon and the Half moon pub. We were disappointed to find it closed , but yours truly had squirrelled away some cold pizzas left over from our night of Pizzas in the wood from the Friday evening. The cider tasted really good however. As we walked over the beacon towards the monument we could see the M5 in the distance at a halt. The walk reminded me of what a beautiful area we live in . My job i all this Deidre stuff as perhaps you know is t swim swim swim . Accordingly i have done my 5km for last week mostly in the pool but a lovely swim in Port Isaac too on the Cornwall Big swim . I need to swim 40,000 lengths by New Year . So…. if you haven’t already donated to the Oesophageal Cancer Association now is your chance. £1,000 raised 4,000 to go

http://mydonate.bt.com/fundraisers/neilrushton1

 The photos are of dear friends Jonny and Els, with Cara Neil and Ceri waiting for our pizza in the woods, then Neil and Cara blackberry picking. 

Hi. Some have asked to be notified when I update the blog as sometimes plans change. If you click on the About at the top of the blog I explain how you can ‘follow’ my blog. You click on the ‘Follow’ link at the bottom right of the top screen and it will prompt you to enter your email address.  Then you’ve done this, you should get an email every time I add a new post. 

Last week my plan changes so my first chemo will be on Tuesday 15th August and my first radiotherapy on Monday 21st Aug. 

Today, instead of chemo, we’ve been sailing with our dear friends Terry and Heather off Plymouth.  My son Marc has joined us from London. It’s been a beautiful sunny day.

Tattoos and Timetables

I drove in to Exeter RD&E yesterday for my tattoos. Radiographers use these to line up the radiotherapy machine for each treatment. I arrived a bit too early and its interesting the people one meets in waiting rooms. One lady looked the picture of  health with rosy cheeks and a big warm smile, but her new hair growth told her story. She was at the end of a long treatment of chemo/rad and surgery for breast cancer and was very much looking forward to her treatment free future. But the lady next to her looked terribly sad.  She was about to start her radiotherapy so I didn’t ask much. I’m afraid I was behaving as though I had just popped in for a morning coffee and a chat. I hope I wasn’t annoying. Probably was!

I loved my radiography nurse. She was young, pretty, lively and cheerful. They lay me down on the long narrow bed surrounded by the scanner which was like a massive white doughnut with lights. They inserted one of those receptacle things to my arm again, to inject a die of Iodine-containing contrast medium to highlight the dreaded Deirdre during the scan. I only felt a small prick, as they keep telling me. It always makes me smile.

They pricked me with 3 tiny dots of tattoo, one between my boobs on my bra line and the others under each arm. You’d need a microscope to see them. They also asked me to sip a mouthful of water and hold it until they were scanning me, at which point they’d asked me to swallow. I was sooooo tempted to gargle and make strange noises, but refrained. They released the iodine into my arm and I felt a warm glow envelop me. I’m so used to hot flushes, this was nothing although it did taste like I’d chewed my way through a metal bar. I raised my arms above my head to hold on to 2 handles ready to be scanned and the nurses left the room to be shielded from the X-rays.

The scanner glided slowly up and down my upper body.  My head was outside the scanner so no problems with claustrophobia. Anyway my eyes were closed and I was walking up to Everest Base Camp. It was over in minutes.

I’m now all done and ready for treatment and they gave me my treatment timetables. My chemo will be one trip to RD&E each week, every Tuesday, starting 15th August and finishing on 19th September with tablets for the other days.  My radiotherapy means driving into Exeter every day from Monday to Friday starting 21st August and finishing 20th September. Apparently I’ll tire as the treatment continues and we will gladly accept the kind offers for lifts we’ve been getting from our wonderful and kind Devon friends and family, all of whom are volunteering.

The last part of the timetable will be my date for surgery. Maybe we’ll get that tomorrow. Neil and I are driving in early to meet the oncologist one last time before treatment starts.

So…… before the wedding, I’ll have had 3 chemo sessions plus the tablets,  and 10 radiotherapy sessions. I probably will be tired, but who knows? We’ll cross that bridge when we come to it.

We still feel fine, happy and positive. Last night I set up the record player I’d given Neil for his birthday and we sat in our peaceful sitting room listening to some classical guitar, some piano, some Debussey, some Leonard Cohen and hummed away contentedly.

All change!

Today I’m tired. I think Neil is too, but he’s still being my rock. He’s at work today. We had a meeting with my oncologist last night who explained absolutely everything and gave us a big decision to make about my treatment. Maybe we feel tired because we have now realised the enormity of what we are facing. Its such a massive treatment plan with a massive surgery and such a long recovery time. It’s daunting, but definitely not insurmountable.

So…..
The reason we went to see my oncologist was that they had another MDT on Thursday afternoon. It involved Mr Berrisford the surgeon, Dr Elizabeth Toy, my oncologist, the doctors who performed the endoscopies on me and various other team members. They thrashed out my case for quite a while between them, but could not agree on the best treatment for me because they can’t quite agree on exactly where the cancer started. If it started in the top of my stomach it would need one type of treatment, and if it started in my oesophagus it would need another. The surgeons want to give me radiotherapy concurrently with a lower dose of chemo before surgery, and the oncologists want to blast Deirdre with heavy doses of chemo and no radiotherapy before surgery. In the end, they came to a kind of compromise and that was to offer me chemo/rad before surgery then 6 weeks of chemo after surgery to eliminate any possible baby Deirdres lurking in tiny spaces.

Neil and I had to make a choice between the pure chemo then surgery route, or, the joint chemo/rad treatment for 5 weeks, then surgery, followed when I’m recovered enough, with 6 more weeks of chemo.

I have to say at this point that we are extremely impressed by Dr Toy. She was frank, open and fair. Pure chemotherapy would be her choice, but she could also see the benefits from the surgeons arguments which she explained very clearly. Her Phd research was on treating oesophageal cancer so she’s extremely experienced and knowledgable. But then so is Mr Berresford with all his experience operating on my type of cancer. These are such highly respected doctors, how are we to choose? And how fortunate are we to have these professionals working so hard for my benefit? Its all pretty mind blowing and my respect for them (including my brother) grows by the day.

Dr Toy concluded by saying that the most important thing is to make a choice which our whole family is happy with, so if Deirdre returns in 10 years time, we will know that we made the best decision at the time, given all the facts.

Neil and I drove home discussing it and we both came to the conclusion that since it was the surgeon who had to operate on me, we would go with his preference. We called David who also agreed, although he too could also see the oncologists’ argument.

So………today we called them with our decision. They have cancelled the chemo session booked on 10th August and, instead, they are now drawing up a plan for the chemo/radiotherapy treatment which will start in about 2 weeks. Even if I were to go privately, she said it would take the same time before the first treatment. I know they are pushing me through as fast as they can. My brother in Leicester says its the same in his hospital.

And so we wait for a plan.

The good thing is that the date of the wedding is now pretty much irrelevant in all this. I will have had such little treatment before it that I should be pretty lively for our big day. And I even get to have my first tattoo!!! 3 in fact. Did you see Phoebe’s tattoo in the TV series Friends? Well I get 3 of those for the radiotherapists to position my radiotherapy treatment. So I will have 2 piercings (ears) and 3 tattoos (dots). Who’d have thought???

The house is still taking shape. We’ve framed and hung the paintings we sent home from S America, displayed the pots we bought, and our home looks wonderful. Neil’s huge hot tub arrived recently, which was an adventure in itself, so we’ve had more decisions to make with the electrician as to where to lay the cables etc. Next we’ll be digging ditches for cables and hopefully the hot tub will be up and running by the wedding.

Tomorrow Neil and I will drive to Port Isaac to start Neil’s swimming challenge to raise funds for the OPA charity. He intends to swim 100km by the end of the year.  Tomorrow’s swim is three and a half miles from Port Quin back to Port Isaac so we’ll be out all day on the beautiful Cornish coast. Eat you heart out Poldark!!

Life is never dull!!!!