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.