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Neil and I had such a great day yesterday. We watched Exeter Chiefs THRASH Montpellier at Sandy Park. It was so exciting. Three of our 6 tries were scored right under our noses. For me, it was even more than amazing rugby, it was Neil and me beginning to resume normal life. What could be a better start than a great rugby victory?

The day before we went to Sidmouth where Neil swam, as part of his polar bear challenge, in the cold sea, ruddied from recent landslides. While he warmed up over a hot chocolate, I shopped… and shopped (successfully) for curtains. Then we went to the cinema where we thoroughly enjoyed the new Churchill film, then went home to have takeaway fish and chips.

I had a blood test last Wednesday and ALL the indicators were normal, which is such great news, so I’m on course to complete the next chemo session on Thursday the 18th. If I continue at this rate, I’ll be fine for my final chemo session on 1st Feb.

So, as you see, I’ve responded very well to this 75% chemo dose. It did make me feel a little sick for about 5 days and I’ve lost enjoyment of most food. Water and many other things taste either like metal or have no taste at all, but I am eating, and that’s the key. Even if I don’t feel like eating, I force myself to eat a decent amount and I’ve put on a little weight. My energy is slowly coming back and as the chemo wears off I’m even enjoying some foods such as fish and chips and curries.

I’ve been careful not to ‘overdo’ things with my returning energy and a walk up to the beacon is a little way away yet, but is most definitely my next goal. I’ve been trying to conserve my calorie intake to put on weight instead, although I’m afraid I couldn’t resist picking up the paint brushes and making a start on decorating the house. I absolutely love designing and decorating and its been so frustrating not being able to put our own ideas into our new home. But I did get too carried away and it exhausted me, so we’ve employed a great chap who started yesterday. Instead, my job is ideas and SHOPPING!!!!

Even more good news is that friends are popping in for coffee and a hot tub. Its a good idea to text first, but we love seeing our friends again. Neil and I are slowly emerying from our reclusive (and quite romantic) few months, but with the flu bug still running rampant out there, I’m still staying away from our warm, bustling, cosy pub and other crowded places. I’m so determined to catch no bugs and complete this chemo course. (The new pump worked first time by the way. It was rather bulky to have strapped to my waist or under the pillow for 24 hours but thankfully it was reliable)

We did have one more surprise last this week. I found one of our doves in our sitting room…cooing and pooing! He must have fallen down the chimney. He was so warm and happy inside, and possibly traumatised, that it took a lot of coaxing to get him (or her) to fly outside again and he spent the night in the warmth of our front porch where he deposited a rather large amount of dove poo for such a beautiful little bird. We were rather worried about him during the chilly night and were very relieved to see him join the other 7 the next morning to fly around our roof. Maybe he’s a loner as we often think we are down to 7 doves, then he returns to complete the flock of 8.

So…. next chemo is Thursday, with the pump fitted again and removed on Friday. Then I suspect I’ll go through a similar two weeks as this current 2. I still have 4 well days ahead of me before the next chemo and my lovely sister Toni is coming to stay. My hair is still falling out and I’ve started wearing the wig, but I still have enough wispy hair to look vaguely OK. Hats are great in this weather anyway.

All is well. Very well indeed as we start planning our life without Deirdre.

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Look who came to visit during my chemo today ! Eve and Des timed their lunch breaks to say hello. It was lovely. Scrabble with Neil was fun too. We didn’t finish so it was declared a draw.

This chemo ward is so busy with staff rushed off their feet. I sometimes feel like I’m an Avatar in a lab full of people being pumped full of magical chemicals. I dream I’ll emerge as an 8′ tall beautiful blue woman determined to save the forests with my 9′ tall handsome blue husband.

Anyway, dreams aside, when my chemo is finished they’ll fit me with a ball pump which will be attached to my PICC line dripping drugs into me overnight. It didn’t work last time so fingers crossed it will work tonight. When it failed in December it added 2 extra day trips to Exeter to the initial 2 day trips and delayed the whole process by days. All rather tiring.

However this PICC line is very useful. I’m never pricked these days by nurses searching for decent veins. They simply plug into my PICC line to take blood tests or administer my chemotherapy. The only inconvenience is having to keep it absolutely sterile and dry in the bath, hot tub and shower, but I’m quite used to wearing the water proof protector now. Unlike my previous chemo and time in Plymouth, I no longer have bruised hands and arms where the needles went in. The PICC line is a tube which emerges out of my body near my left bicep protected by a sterile clear bandage and not visible under my winter clothes. I’ll be happy when it’s gone but I do enjoy not having a cannula fitted each visit.

I feel fine today. Just a little tired but that’s partly the steroids stopping me sleeping. Oh yes! I almost forgot to mention my steroid induced shopping spree yesterday. I bought lots of things for the house including some beautiful bedding which will give us the colour schemes for painting the bedrooms. Retail therapy cures all!!! Luckily for Neil, I only take them for the 3 days surrounding my chemo day, and when they wear off I could sleep for England with absolutely no inclination for shopping. The decorating can wait. But I’m itching to start when my energy levels return.

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Wow! I had fish and chips with Neil last night and 2 eggs on toast for breakfast this morning!!…. and no mad dashing to the loo. I am truly amazed at the remarkable powers of recovery our bodies have. 10 days ago I was in hospital with a temperature of 39.5 (103F), barely able to eat or drink, and now I’m feeding myself up with good food and hopefully getting back to normal protein and potassium levels. Who would have thought it? I’ve sorted out all the cupboards post Xmas and got the house back to normal. It feels great.

Now that I know how well I can recover, once the chemicals are out of my system, I’m pretty much looking forward to my next chemo tomorrow. I hope I pass my blood tests today. That would mean 2 chemo’s down and only 2 to go. Dr Toy has reduced the chemo levels to 75% of what I had last time so I probably won’t be nearly as unwell. It’s all good news.

I am so aware of the stresses on the NHS at the moment and I could not imagine my chemotherapy being delayed due to lack of resources as some on the news have encountered. I do hope the government takes note and helps this appalling situation.

Hair: I did make an appointment for today to have my hair chopped off, but there’s not enough hair left, so I cancelled it. I woke up yesterday morning with a huge ball of falling out hair matted at the back of my head which I couldn’t untangle. I spent an hour in the bath smothering it with conditioner to untangle, but it just ended up in my hands. So the only solution was to cut it off there and then. I’d been moulting handfuls of hair all over the place for weeks and I feel so much better now it’s gone. There’s still just enough that I’m not completely bald yet but the wig is at the ready. I wore it New Year’s Eve and it was fine until it started slipping backwards. So if you see me anywhere with a wonky wig you MUST tell me. I’m not embarrassed at all. Just give it a tweak for me.

I’ve been a natural blonde all my life and it’s interesting how dark it’s become with the top sunny layers falling out, leaving me with this dull dark blonde colour. When my new hair returns, Neil and I are going to have to spend weeks and weeks in sunny climates getting me back to my natural blonde state. I know I’ve been lucky and spoilt by having such easy hair but I’d hate to start having to colour it. Anyway that’s a while away yet. It might turn into a frizzy mess! Who knows?

Our 8 beautiful glistening white doves are still with us. Heaven knows how they are coping with this stormy weather, but they do, and give us so much pleasure. Chemo tomorrow. There are certainly many, many worse situations for most to deal with chemotherapy. I’m a very lucky lady.

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I was due chemotherapy today, but I’ve had a reprieve. Yay! I’m quite weak and barely eating, but the good news is that my blood tests were OK. Since I’ve had such a rough time, Dr Toy did give us the option not to continue with chemotherapy as we have no idea if there is any cancer left. But since we’ve started, it was an easy decision to continue when I feel better, otherwise these last two and half weeks were for nothing. I’m booked in for my next chemo on 4th Jan.

My hair is falling out at an alarming rate and I feel strangely accepting of it. It’s getting absolutely everywhere, so I’ve decided to have it cut really short. I haven’t booked anything yet but I’ll post a photo when it happens.

We’ve had a little saga since releasing the doves on Christmas Day. The weather was awful and 3 doves immediately flew back to their original home! Boxing Day morning we counted just 4 in the dovecote and the following morning there were none! Poor Neil had worked so hard, preparing the dovecote, feeding them, sitting with them, cooing to them for 8 weeks. It was a sad morning as he drove off to work.

The same sunny day, Eve, Solomon, Duke(dog), Tessa and Joe all went for a walk up to the beacon and looked down onto our house. To their happy surprise they saw 8 doves resting on our roof. We ran outside to see them. They are absolutely beautiful, glistening in the sunlight on these frosty sunny days as they swoop from our roof around the garden. One is certainly missing, but the remaining 8 seem very happy flying close by. They never seem out of sight these days, so we hope they can deal with predators like buzzards and foxes. Fingers crossed they remain safe with us and are here to stay. We love them.

We’ve all had such a great Christmas. Tessa, Joe, Marc and Sarah left Tuesday and both couples had long tedious onward journeys. Cara stayed on and came to see the consultant this morning, then we put her on a train back to London.

So now we are team Ceri and Neil again, facing the future together.

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I’m home for Christmas!!!! It’s a little precarious and I have to go straight back for blood tests on Boxing Day, but that’s fine. I’m still trying hard to keep my fluids up and even ate some bites of food. Neil and the girls have stocked the fridge with all kinds of goodies. The presents are lying under the pretty Xmas trees and we’re all looking forward to having a great day. Happy Christmas everyone.

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Just a quick update. I’m back in hospital for a couple of nights. I’m finding it so hard to eat or drink that my blood pressure is very low, my diarrhoea is back and my temperature very high as I’ve picked up an infection. It’s the best place for me so no complaints. Marc and Sarah, Cara, Tessa and Joe all arrive tomorrow to take over Xmas with Eve, Des and little Solomon in the sidelines helping too. I feel like the Queen of Sheba!! Ha ha. I will be home for Xmas.

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Here’s the tough blog. The good news is that the second pump fitted last Thursday worked. I woke up Friday morning to see that the chemicals had been released into my system through the night. But the side effects are really kicking in now. I felt really ill all Friday with bad diarrhoea so we didn’t go to the doctor’s Xmas party as planned. I simply wasn’t well enough.

However I was determined to see my niece Jane get married in Staffordshire on Saturday, and we did! It was a lovely wedding. Neil drove the whole way and the roads were empty. My other determined plan was to spend Sunday with Cara in London as it was her 30th birthday, so Neil drove us down to Islington after the wedding speeches and we arrived at Cara and Andrew’s canal side flat at about 10.30pm. Sunday was perfect, spending it with Cara and Andrew, and then we drove home to Devon. What a happy weekend.

But I’m struggling. My mouth is very sore and eating makes me feel sick. My weight has plummeted and I’m trying really hard to force myself to eat anything, simply to keep my weight up. It’s such a shame as all that wonderful progress I made recovering from the operation seems to be turning backwards on me. If I can’t get decent nutrition into me, my body will deteriorate, which is what I feel is happening. I can barely walk half a mile now as I’m quite weak. And with only half a stomach, the problem is much harder to deal with that other chemotherapy patients. It’s certainly a challenge!

Strangely I still feel quite OK. I guess because the process has started and I have only 3 more chemo sessions left. I’m looking forward to Xmas with family and no more big events to attend. I’ve decorated 2 Xmas trees today, so I’m really tired but content that it’s done. Next I have to figure out what I can eat for supper. I tried my cottage pie lunch time and ended up with diarrhoea, so I’m a bit stuck. I called the dietician in the hospital who’ll get back to me tomorrow. I’ve been googling and have printed out various meal ideas for me to refer to. I’m really hoping that my body will adjust a little and things will get easier. Someone mentioned that the first chemo is the worst. I hope so !!!! My hair hasn’t started falling out yet so that’s good news, although I know it will.

So that’s my update. I’ve promised to be completely honest, and I don’t foresee much change for a while. My next chemo session is straight after Xmas, so I’ll get on with trying to eat what I can and enjoy the Xmas festivities, even if it’s simply sitting in front of our cosy log burner watching the TV with my adorable husband. That’s definitely good enough for me.

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Hmmm! The good news is that my ALT reading was 42 so I had my chemotherapy yesterday. After the 5 hours of the usual chemotherapy they fitted the 24 hour device to administer the rest of the chemo through my PICC line. It was 6 pm by the time I left and I was the last person in the ward for the last hour. My nurse joked that she’d leave the keys with me so that I could lock up before going home.

At home I was fine for a while and I’m fine now. But I did experience really bad stomach pains last night, then diarrhoea during the night which seemed to resolve my tummy problems. My fingertips tingle slightly but only when they are cold and I have a slight sore throat, but these are expected side effects and certainly no problem.

However the device they fitted hasn’t worked so no drugs have gone into my system over the last 20 hours. I’m sitting here in the Cherrybrook cancer ward in Exeter RD&E waiting to find out what will happen next. It’s so frustrating having to drive to Exeter again spending hours in hospital waiting. The Xmas lights and decorations still sit in their boxes at home as I’m either too tired or too busy to hang them and Neil’s been working hard. But all I can do is wait here until Dr Toy decides what to do about the failed devices and go with the flow. She must be frustrated too.

I’ve just met a lovely chap called Keith next to me who has had exactly the same problem with his device. None of the staff know why these devices don’t work or even how they work.

In the end, the nurses disconnected them and Keith and I are having to return tomorrow. They will be set up with new medication and fitted again. These chemo meds cost a fortune so I hope the NHS can claim this back from the company supplying the devices.

But more than that, I hope it works tomorrow as I want my chemotherapy. At least I don’t have to sleep with it tonight although it didn’t really bother last night. I barely noticed the long tiny tube which came out of my arm then under the pillow to the device on the other side of the pillow. I could toss and turn as much as I liked.

It’s a 5” diameter doughnut shaped clear hard plastic device with the meds in a clear plastic bag inside. I can see the bag decrease in size as the meds are administered (or not which is how I realised it wasn’t working). During the day I keep it in a black bum bug around my waist under a floppy jumper, so that too was fine.

On my way home I popped in to see Wendy who’s daughter Sophie got married on Saturday. It was such a great wedding and we had a lovely post wedding catch up, so all in all I’m pretty fine.

Tomorrow is another day! Tingly fingers crossed!!

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Wow! What a concert it was!!! Just as we promised, everyone loved it, audience and performers alike. We had such huge applause for Bohemian Rhapsody and Handel’s Hallelujah chorus. I used to prance about my university room to Bohemian Rhapsody after Mum passed away in an attempt to feel better, and I’d always dreamed of singing the Hallelujah chorus in a choir, but as an average singer, I never ever thought this dream would come true. Thank you Alan Boxer for making all this happen at Voiceworx ( http://www.voiceworx.org). From a group of people who have never auditioned, you have transformed us into a real choir loving the enthusiastic applause we receive. Who needs chemotherapy when our mind is so happy? I’m convinced such uplifting singing has a huge healing effect on one’s body. All my usual aches and pains disappeared for days.

However, it does seem as though my body needs to put me in my place occasionally. Since the surgery I’ve suffered from ‘dumping’ syndrome. I had this quite a lot when I first came home from hospital and Neil used to gently walk me round and round the house waiting for it to pass. My stomach is so small now that food passes too quickly through it. In particular with sweet foods, sugar ends up in my small intestine far too quickly. This raises my blood glucose levels and causes my pancreas to increase its release of insulin. This in turn causes a rapid drop in my blood glucose levels (hypoglycemia) and I end up with really bad tummy pains feeling generally ill for an hour or so. It’s quite common in people who have had my surgery, and also obese patients who have had bariatric surgery, but I haven’t had it for a while so I’ve been getting more adventurous with my eating. I haven’t liquidised food for ages now.

On Friday, I felt so good that the day was going well. I was excited about the concert and our guests staying, I’d finished cooking for 10 people, and I enjoyed a lamb casserole for lunch. So I decided to try one of Mr Kipling’s exceedingly good Cherry Bakewells to celebrate! Ha! What a bad idea that was! It was absolutely delicious, until half an hour later when the tummy pains set in. I recognise them well and nothing whatsoever seems to help. Rather than sit at home alone in pain (Neil was working), I decided to walk it off in the country lanes surrounding our house. Thank heavens no horse riders passed me by as I must have sounded most odd….step…groan…step….groan, but the cool fresh air felt good against my clammy face. After an hour it passed (and neighbours Xmas cards delivered), our guests arrived and we had such a wonderful evening. I’ll hang fire on the cherry bakewells for a while and stick to just 2 of my favourite Ferrero Rocher chocolates for dessert. It’s just a matter of time and trial and error until I can eat normally again.

Next weekend is even busier, so we’ll just have to see how my body reacts to chemotherapy on Tuesday. Onward and upward as Mum always used to say!!

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In a small way this delay is about convenience. I drove to Exeter early this morning for my blood test at 9. My liver enzyme ALT reading was 110 which was still a little high, but much much lower than the last reading of 382, and I could have gone ahead with chemo today. The trouble was that I’d have had to stay on in hospital all afternoon for treatment which takes 5 hours, and when that had finished they’d fit the chemo cassette early this evening, and I’d have missed the concert final rehearsal. And then I’d have to return to Exeter 24 hours later, i.e. tomorrow evening, to have the cassette removed, which would have meant I’d have missed the concert altogether (and I hadn’t even mentioned Sophie’s wedding on Saturday!). So Dr Toy suggested that we have a lovely weekend, enjoy singing in the concert, have another blood test on Monday and start the chemo on Tuesday. That would also give my liver enzymes a chance to fall right down to normal levels.

Neil and I are really happy with this (he’s singing a solo!). We are both looking forward to singing tomorrow evening, having practiced at home to catch up with songs we’d missed during the term, and I feel so great to be singing. The songs are from all genres and it’s going to be such an uplifting evening for singers and audience alike. And even more so for us, with dear friends Simon and Lorene driving down from Bucks to see us sing and stay, and my sister Toni and Dave driving from Dorset, and Neil’s daughter Tessa and Joe driving from Bristol. We have more friends joining us for supper before the concert, and everything has fallen into place.

We can look forward to a wonderful weekend.

 

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