Skiing was fantastic!!! Amazing!!! Exhilarating!! Happy!! Exciting!! Stunning scenery!!

 

4 months post oesophagectomy and 4 weeks since my last chemotherapy, I really wasn’t sure if I’d be fit enough to ski at all, but packed my ski boots and all my ski clobber just in case. I also packed my walking boots to join the walking group if skiing was too much for me. We left home at 3.30am to get to Bristol to catch the flight, so I wasn’t the only tired person to arrive at Canazei in the Italian Dolomites, Deidre or no Deirdre!

On arrival, I optimistically joined everyone renting skis. It was great meeting up with our ski buddies from previous trips, plus Devon friends Neil and I had introduced to the group, and my dear friends Jayne and Lisa who flew in from Gatwick. I love my life with Neil in Devon and I’m so lucky to have made so many good friends here over the last 7 years, but I do miss my old friends so it was great seeing Lisa and Jayne mix so easily with everyone. And they are great skiers!

The first morning I decided to ski as I hate missing out on anything. I was so surprised as skiing was so easy and it felt absolutely WONDERFUL!!! All I had to do was stand on the skis and let gravity do the work. I have always loved skiing and it felt like Deidre had never happened. With Neil, Lisa, Jayne and others, we whizzed around the slopes and even threw in a few black runs for good measure. I ended up skiing all 6 days, taking just 1 afternoon off mid week as I listened to my body telling me to rest.

As Devon and most of Britain ground to a halt, enduring the biggest snow falls for many years, we skied the Italian slopes enjoying blue skies, chilly mountain air, dramatic Dolomite scenery, vin brule (hot wine), good friends and good Italian food. Occasionally I skipped meals in the hotel as my tummy is a bit random as to whether it decides to be hungry or not. I still have the odd half hour or so when I can feel quite sick and need to lie down and we haven’t figured out what triggers this. But it’s early days after such a big operation so I’m not worried at all about it.

I got quite out of breath polling the flat sections between skiing, so I’m guessing the lung they deflated isn’t functioning quite at 100% yet. Gentle exercise will be the best way to recover to full fitness. With my new electric bike, I can join Neil and friends cycling through our pretty Devon country lanes, or enjoy the many picturesque walking routes which start right from our back door. We have quite a few trips planned already, which always includes some exercise or another, so 2018 with Neil is going to be a GREAT year!!!

I’m a very, very lucky lady.

What an amazing day!

I’ll start with the good news in that my chemotherapy was cancelled forever and I need no more sessions. It’s wonderful news, but it has not exactly been a straightforward day.

It started with a blood test at 10.30, of which all were ok except my liver function test which they were still waiting for. It looked good for chemo so they booked me in and I wrote the very upbeat blog below.

Fortunately I didn’t publish it, as an hour later the nurse came back with the bad news that my liver ALT test results were too high and that chemo was cancelled. I was to have a liver scan instead. What a huge disappointment that was!

I’d had this problem with my first chemo and my liver scan was absolutely fine so no one was worried, just disappointed that the chemo was cancelled yet again, especially after the earlier elation.

Just after that, Neil went to make a coffee in the corridor and bumped into Liz TOY my oncologist. She hadn’t seen the message that my liver function test had failed and immediately said to Neil “GO SKIIING INSTEAD! Skip the chemo!!! “ Then dashed off. No wonder she’s so slim, she’s so busy she’s always dashing. I love her.

So Neil came back into the ward to give me the good news. Fantastic news actually. What a roller coaster morning it had been, from elation to resignation and back to elation.

Liz came back and explained that they weren’t sure about giving me this final dose anyway as I’d struggled so much with the previous sessions. Because I’d had radiotherapy, I was more susceptible to problems with the chemotherapy so they had planned to give me just a 50% dose anyway. In a way I think she was equally relieved for me that it was all over. I gave her such a great big teary hug.

After she left, both Neil and I became quite emotional. This treatment has run our lives since July and suddenly it’s all over. It’s like finishing finals at uni. The relief is immense but what does one do next as it was so unexpected? The nurse even came over and removed my PICC line. It really is over and it’s all rather hard to take in.

Eve popped over too for great big hugs all round. Lots of them! She took the photo of me without the wig and you can see I didn’t loose all my hair. It’s mostly all gone from the back from sleeping, rather like a baby’s new hair but there’s enough at the front to look like I’ve simply got extremely thin hair.

I’ll have an appointment with Liz Toy early next May and a further appointment with the surgeon following that.

It snowed slightly this morning which was lovely, then we drove home from the hospital under blue skies and decided to walk up the beacon. WE DID IT TOO!!!! I felt fine. Wonderful in fact. Maybe the steroids I’ve been taking in preparation for the chemotherapy got me up there. Who knows?

I tasted the wine Neil brought up to celebrate, but I’m not quite ready to enjoy wine properly just yet. I don’t need any more steroids either so my energy will decrease for a while. Actually I’m expecting to feel pretty tired for a while. But now I’m 2 weeks ahead of schedule, I may well be enjoying the Italian wines in the Dolomites. Who knows? I might even ski if I can get fit, but gently as Liz Toy suggested.

I thoroughly enjoy a roast beef Sunday lunch yesterday so my appetite is almost back to normal and no more chemo sessions to knock me back. I still can’t believe it as I type this.

What an amazing day and to end it with a walk up Culmstock beacon was just perfect.

Here are the previous blogs I wrote but didn’t publish earlier today:-

Blog 1:

Last chemo on!!!!

Yay! I’ve just had the news. My blood test passed and Neil and I are waiting together in Cherrybrook ward for my last chemo. I was so tired last week I did wonder whether I’d have the energy to celebrate, but I’m on steroids and almost jumping about! We’ve been watching the winter olympics while waiting so the time has past most enjoyably.

We had a busy Saturday. Jonny and Els and her Dutch sister and brother in law popped over Saturday morning, then we went to watch Exeter Chiefs play Worcester with David and Anita in the photo (Chiefs lost 😟) then dashed home to watch England beat Wales as well 😟. Wales plays Ireland on my birthday on 24th Feb so Neil and I will sit on different sofas that day! Neil spoke Welsh to open his speech at our wedding and the Welsh for ‘sofa’ is ‘sofa‘ which he enunciated with a strong Welsh accent, being the only word he understood. We were all in hysterics. What a happy day that was….. with many many many more to come. I’m soooooo excited!!!

We’re already full of plans. We’ll spend Xmas with Neil’s sons and families in northern NSW, Australia then head of to New Zealand. We’ve got lots more local European trips planned too beforehand. Travel insurance will be my next project. All advice will be most welcome.

Anyway, back to today. After chemo they’ll attach my last set of 24 hour drugs to my PICC line and I’ll return tomorrow to have the pump and the PICC line removed. Finally I can shower and bathe without the limbo gadget to wear on my arm protecting from infection the tube which enters my arm and finishes near my heart.

The long road to recovery will commence. I can’t wait for my hair to grow as that wig is fun but itchy. But once these steroids wear off, my final recovery will start with great tiredness and sickness.

Blog 2:-

Alas no chemo again

Boo hoo 😟. My usual blood tests passed but this time my liver function ALT test failed. Neil and I are waiting together in Cherrybrook ward for a liver scan at 2.20. I’ve had this before and the scan was absolutely fine. The ALT can go up with steroids so it’s all a mystery. But it means definitely no chemo today and we’ll try later in the week. I’ll update this when I know the date for my next blood test.

——– ~~~~~ ——-

THE END

But if you like I’ll update this now and again to let you know how I’m getting on?

I’m having a blood test at 10.30 on Monday morning, and if my neutrophils are up, then we can go ahead straight away with my last chemotherapy. Fingers crossed!!

As suspected based on previous tests, my white blood cell count is too low so I won’t be receiving chemotherapy tomorrow. It’s such a shame as we are booked to go skiing in the Dolomites in Italy on the 25th February and the delayed chemo will definitely affect my fitness to ski. I do enjoy my black slopes with the guys, but my legs just aren’t very strong at the moment for even the easy slopes. Maybe I could pinch a sick back from the plane and tie it around my neck skiing… ha ha! No…. I won’t ski, but I can join the walking group instead. It won’t be as exhilarating, but the walkers are great fun, mostly ex skiers, and it will be a wonderful way to improve my fitness. There’s also a fabulous swimming pool in the resort and some rather nice shops, so if have absolutely no doubt that I’ll have a great holiday with my super keen new skier, Neil. He improves dramatically every year, so I’ll be testing him in following ski trips!

On the plus side, I’ll be well enough this week to sew new curtains for our guest room. I ate all 3 delicious courses at our friends’ lunch in Topsham last Sunday. There’s a positive to every situation as I always feel pretty well just before chemotherapy, so I have a good week ahead of me. The last session will still be the last session, no matter when it happens, and the relief and celebration of it being over will be just as much fun.

I don’t know when my next blood test will be yet as I’ve only just heard this news. The consultant oncologist will call me tomorrow morning with a revised plan. We are hoping it might be early next week due to our trip, but if it’s Thursday again, then so be it. I’ll update this blog tomorrow when I hear.

I’ve just watched Wales thrash Scotland at rugby, so, much as I love Scotland, I’m feeling very buoyant! We’ve just had such a great 2 days. My dear school friend Pam (obviously another Wales supporter) has been our guest. We visited Beer in the glorious but rare Friday sunshine, watching Neil swim for his Polar Bear club.

He swims 2 days a month in the sea without a wet suit. Some days have been freezing and rough, but Friday the sea was calm, the sun shone and the fishermen preparing their boats joked around as Neil stripped off. They thought he was mad, but Neil loved his swim. Beer is such a beautiful fishing village with some great art galleries. Later, we had a warm welcome from our friends back at our pub in Culmstock. We really miss it and it was sooooo tempting to stay and catch up with everyone, but I still need to steer clear of crowded places so we were sensible and moved on to the restaurant. It’s just a few weeks left until we can join them all again.

Anyway, despite feeling good now, I’ve had a difficult week and postponed quite a few meetings with friends and choir. Each chemo session leaves me feeling worse than the previous and the time seems to drag very slowly. It was so great having Cara to stay last weekend and we did all manage to see the Culmstock panto, which was the best ever. We sat quietly near the back staying away from the crowd and there were times when I contemplated borrowing a pint glass to throw up into, but it never came to that. We laughed throughout, despite my nausea. Cara was such lovely calm company during our quieter weekend.

Food and drink still taste awful and I get no pleasure from eating, but I am eating enough to maintain my weight. I googled when my sense of taste might return, which could start as early as 2 weeks after my last chemo. Everyone is different. One lady’s story made me smile. She commented that when her taste returned, she loved her food so much that she quickly put on all the weight she’d lost during chemo and more! I think I’ll be the same as the brief moments when I can enjoy food, I’m ravenous.

I’m wearing my wig a little more often, but I still have just enough hair to form a fringe around my face, so I’m not totally bald and I rather like my new short hair cut so I’ll probably keep it short when it grows back.

So I continue with these good days as we approach the next chemo and I hope that the blood test this Wednesday will allow me to go ahead with my final chemo on Thursday. I wont be too disappointed if it fails as all the others have, so I’m prepared for a week’s delay. As soon as I hear I’ll update the blog. We’re off to Topsham next for lunch with friends and I feel absolutely fine.

Hurray! Chemo is on later today!! I had a blood test in Exeter yesterday and we drove there again this morning for the results and a meeting with the oncologist. So I’ll return this afternoon for 5 hours of chemo, then the pump will be fitted into my PICC line and I’ll have to return tomorrow evening to have it removed.

Neil and I had such a lovely time with Des, Eve and little Soloman in Centerparcs earlier this week and rather sadly we had to leave half way through our booking to have my blood test. Neil swam and swam with them in the huge aqua pool which was perfect for toddlers. All of them whizzed down the slides and Solomon LOVED it. His cousin Jessica in Australia is such a strong swimmer at 4 years old, so Sollie has 2 years to catch up.

Unfortunately I left my arm protection for my PICC line behind so didn’t chance swimming for risk of infection, but Neil and I enjoyed cycling around the park seeing all the facilities. My new electric bike worked brilliantly up the hills as Neil pedalled hard, and we are really looking forward to more cycle rides now I’m out and about more. I am still often very tired, but we manage it well with plenty of rest and our lovely decorator still painting away upstairs.

Cara’s coming to stay this weekend which I’m really looking forward to. We’re taking her to the Culmstock Panto Saturday night, which will be a totally new experience for her as it’s aimed high above the children heads and directly into adult humour! Its usually very, very funny playing on our local village characters.

So after today, just one more treatment to go. I’m booked in for a blood test on 7th Feb and final chemo on the 8th Feb. But since I’ve always failed the 2 weekly blood test chemo might well be delayed, but just 1 last time. Yay!!

We were so surprised to find out that my neutrophils and white blood cell counts were really low after my blood test yesterday. All was extremely well last week and I feel fine. I’m eating well and gaining weight, but they’ve delayed chemo until next Thursday 25th January. I guess my body simply doesn’t like chemotherapy and there’s nothing I can do about it except wait for the blood counts to recover.

I’m so have to be very careful about going to crowded places as I can easily catch bugs from people next to me. So no hugging at choir, or rugby, or anywhere. If you don’t feel well, 2m is a safe distance from me.

At home Neil’s been busy working as a locum and I’m loving getting the bedrooms painted, choosing curtains with Neil and drilling holes in walls for new curtain rails. Once upstairs is finished we can start on the garden as it was neglected all last year due to the wedding and ‘stuff’.

I feel fine about these delays. It just comes with the territory and there’s no point getting upset or anything. There are far too many good things happening in our lives and I’m just about to pick up the electric drill again. I love getting the jobs done. My next update will be next Wednesday after my next blood test. Fingers crossed as I really want to get on with it.

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.

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.

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.