Culmstock beacon’s Millennium bench. My new training ground.

I’m so tired these days that I find it extremely frustrating. Against Neil’s advice I started gardening a few days ago and lasted just 15 minutes before I had to come in exhausted. This is not good enough!

My dear friends from Fleet came to visit yesterday as I’m missing our annual girls cycling holiday this year which they’ve based in Dorset. We had a delicious Sunday lunch in Culm Valley Inn. It was great to see them as I didn’t get the chance to catch up properly with them at wedding. After they left I was very happy, but very tired.

So last night I decided I must get fit no matter what, and I’ve decided to walk up Culmstock beacon every day, come rain or shine. This is my challenge.

Neil joined me today, as he will whenever he can. My legs were fine but my pulse became quite fast and I had to stop a couple of times to rest and recover on the way up. Once at the top we rest and enjoy the view, then it’s an easy walk back home. This up hill walk is a perfect way to gage my progress.

Next I’m having a massage at Dart’s Farm. Thanks to all Hens who contributed to this generous gift. I need to thank many many more people but that deserves a post of its own.

Supplement to initial blog:

I’ve been googling! The doctor’s nightmare patient, ha ha, but not really. I’ve been concerned about my lack of energy, so in a way it was reassuring to know that it’s extremely common after chemo/rad treatment and could last a quite few more weeks. I thought I’d bounce straight back, but sadly no. Exercise is advised, so I’ve got that covered, and I’ll just have to be patient, which I’m not so great at.

My swallowing seems to be getting more painful too and I was hoping it would start to improve now my radiotherapy has finished. The pain starts about a second or two after I swallow, as the food makes its way through the affected area. Again, I’m expecting things to happen too quickly and, indeed, this could get worse before it starts to improve in a few weeks. I was being a rather over optimistic describing it in my last blog as it’s extremely painful these days, which makes it rather difficult to keep my fluid intake up to a sensible amount. I’m working on that.

So………. I should have investigated earlier. It’s only that I’ve come to realise that I’m no super woman, but just a regular human being going through the same process as most others who have received this chemo/rad treatment for oesophageal cancer. And with that in mind, I’ll brace myself for a few more trying weeks and I will wait patiently for the improvements which I know will follow.

AND……we’ve both got itchy feet! I don’t think either of us has ever remained in the UK for 5 continuous months before and it doesn’t suit us! We’d LOVE to go away AND before surgery!! We have our ideas but we’ll simply have to wait to see my progress and get a fixed date for surgery. Watch this space!!! If ever there’s an incentive to recover, this is one!!

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Wednesday:

I have to start by saying I feel absolutely great as I’ve just had my last radiotherapy. They always ask so many questions about my health, but really they want to know if my heart and lungs are OK. This ‘collateral damage’ has always been at the back of my mind during radiotherapy which is why I haven’t moved a millimetre in the sessions. I don’t feel I’ve been damaged at all (fingers crossed) as Neil and I walked up the beacon last evening and I was fine. I’m not fit, but that’s just a matter of time. I will be, and thats the point.

So……. yesterday (Tuesday) I had my first hiccup, but rather a nice hiccup. I’m not sure if I’ve said before, but I’ve had to have a blood test every Monday, before each chemotherapy session to check that my white blood cell count is strong enough to withstand the treatment. Well yesterday, they called me in early as my white blood cell count was very low from Monday’s test, and maybe things might have improved during the night. Neil and I jumped in the car and set off for Exeter.

They fitted the cannula straight away and took my blood and we waited. Fitting the cannula isn’t so easy as the treatment progresses, as the veins in my hands and arms get thinner and it took a second nurse to find a suitable vein. I kept smiling as they were doing their best, but I did think “ouch” more than a couple of times. In the mean time the doctor came to see me as they’d noticed the skin rash on my arm which I explained had spread to my back. I don’t mind any of these side effects as they seem so insignificant compared to the horrendous reactions I thought I might get from chemotherapy and radiotherapy. I just needed some steroid cream, that’s all.

The nurse returned with the blood test results which she discussed with the doctor and they concluded that my white blood cell count (150 instead of 350) was far too low for me to receive chemotherapy. For a while both Neil and I thought we’d have to come back later in the week, but no!! I’m done!!  Cooked! This particular chemo was designed to expose and weaken the Deirdre cells for the radiotherapy to kill them off, and since I only had 2 more radiotherapy treatments, I’d need no more chemo!!

WOW!!!! The END!!! No more damaging chemo for a long while, no more cold cap to contend with, or masses of steroids to keep me awake at night and all those pills I’ve been taking to counteract side effects. Suddenly it was all over and even my hair has rarely looked so good as I’ve been so careful with it.

So off we went for a quick trip to radiotherapy and Neil drove us home. Tiredness being the main side effect, I grabbed some sleep and then, as it was such a beautiful day, we walked up to the beacon. I needed the fresh air and that beautiful view, and maybe I was testing myself a little. I walked slower than usual, but apart from that I was fine. We sat on the hand crafted Millennium bench watching the house martins swoop around us, as we gazed across the rolling Devon valleys to Dartmoor in the far distance. It’s a breathtaking view which differs with every visit, with the changing light, winds and weather.  And later that Tuesday night, pill free, I slept 10 hours!! Wow.

Today, our dear friend Wendy, drove me in for my final radiotherapy, then we went shopping to Dart’s Farm to celebrate. Its a huge local store full of design ideas, Aga equipment, sporting goods, great local food and more. I can put all my treatment behind me and focus on the next stage, which is to get well and fit.

We have 24th October pencilled in for surgery, but nothing has been confirmed yet and I have a CT scan booked for 1st October to see the results of all my treatment.

I’m sure I’ll need blood tests to keep an eye on my white blood cell count. With little immune system operating in me at the moment, I need to avoid crowds as any infection I might pick up could be pretty nasty. Neil reckons I should be OK in a week.

Thursday:

Since I have promised to be very honest in this blog, I’ll explain how I am physically at the end of this first stage.

Tiredness: Alas, I didn’t sleep well last night, so I guess it might take a little while to return to normal sleep patterns. As long I can grab some sleep during the day, I recover well and enjoy a normal life. I’ve been dying to get on with jobs around the house such as painting and gardening. Finally we’ve organised the tool shed. Yay!

The radiotherapy has been burning and killing cells in the base of my oesophagus, so it feels a bit like a dead weight sitting above my stomach. Swallowing has become pretty painful, especially drinking water so I’m trying hard to keep my fluids up by sipping. I’m off tea, coffee, alcohol, fruit juices and anything acidic. Luke warm sweet milk is good. Our friend Pip made an amazing smoothie the other day with cucumber, apples, grapes, spinach etc etc and it was delicious. A few foods I love and slip down relatively easily, but others get stuck and I have to walk around the room a few times to give it chance to pass though. Its more unpleasant and inconvenient than terribly painful. I eat very carefully and stick to bland flavours as I no longer enjoy herbs or spices. Of course, all this will improve each day I heal, post treatment. I’d love to be able to swig down a cool glass of water when I’m thirsty.

The final side effect is skin rashes. Well, I HAVE to disagree with the advice I was given about Mole Valley mint scented udder cream. Its AWFUL!!! When the rash reached most of my body a week or so ago, I smothered myself with the stuff before bed. I stank and stuck to the sheets! Ugh!! The mint made my skin so cool that I had to switch on the electric blanket, so the udder cream scent filled the bedroom. I felt like a giant sticky Kendall’s mint cake. If I hadn’t been so tired, I’d have showered it off straight away, which I did first thing in the morning. And I washed the sheets. This stuff is designed for cows’ udders and is definitely not for me. I’ve gone back to my faithful Dove products. Neil says he didn’t mind sleeping next to a Kendall’s mint cake and might use it one day!! NO WAY!!! Its going straight to the kind farmer next door.

So, apart from being a recluse for a week, life will get back to normal. We’re hoping to go away for a holiday before surgery, but we cant plan anything until we have a confirmed date. We’ll keep walking up our beautiful beacon and beyond as I get fitter and fitter. I couldn’t feel better.

These photos were taken before the wedding by our wedding photographer Jonathan Neale of Exeter. We’d thoroughly recommend him and his wife Isobel as excellent photographers and such a pleasure to work with. 

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My 5th chemo and 17th radiotherapy

I heard some nice comments today at chemo. I asked why there are no other coldcap patients and the nurses explained that some keep their hair anyway and some others aren’t brave enough. That’s hard to understand as I hate pain and I’m not brave at all. I just wanted to keep my hair for the wedding so I was simply determined. As I described before, it’s just like a 20 minute migraine which I know will end. Today I’m so used to the cold cap that I fell asleep wearing it! It seems a shame if people lose their hair unnecessarily as once the first 20 mins are done it’s absolutely fine. And when it comes off it gives you that fantastic sensation of freedom and comfort which you get when you take your ski boots off at the end of an exhilarating day. I’m so glad I persevered as my hair has never been so well conditioned. It looks better than ever and I’m getting it cut on Friday.

Talking about skiing, Neil asked my surgeon today if we were mad to go ahead with our booked ski holiday leaving on 25th Feb 2018. He said go for it!!! What a goal that will be for my recovery. Many non skiing partners in our group go on interesting walks every day so I’ll have a choice of activities. Numbers are down this year so if you’d like to come, please email me straight away. We’re going to Canazei in the Dolomites in Italy for a week. The skiing is amazing as it’s connected to 12 other ski resorts. The group’s skiing abilities vary from nothing to  beginners to very experienced so all levels are welcome. We went there 2 years ago and it included a day in Venice on the way. This year we’re traveling via Innsbruck where we can spend some time. It’s always great fun for skiers and non skiers alike.

Anyway, back to Deirdre. I’m a strange cookie. I actually felt excited about going to chemo today as I’m nearing the end of this part of the treatment with only 1 more chemo to go and I’m very aware of the damage being done to me. Our dear friend Heather Radmore drove me in and the lovely Anna Lisa Taylor drove me home. Our friends are ganging up on me and won’t let me drive on chemo days. It’s so very kind of them as Neil was at work. I’m still very happy to drive on radiotherapy days as driving relaxes me.

And our friends were right really. I was warned that I’d start feeling very tired in these last 2 treatment weeks and despite my inner beliefs that I’m invincible, the oncologist was also right. I keep taking cat naps, and if I fall sleep I’m fine for quite a while. But then I am also recovering from planning a huge wedding so I’d probably be feeling tired anyway. We’re still mopping up the last wedding bits and we finally opened all our cards on Sunday. Thanks to EVERYONE for our cards and generous donations to the OPA charity. Neil reached much further than his £5000 goal and we are all so very grateful.
We’re going to support our local cancer charity FORCE with any further donations from the wedding and others. If you send cheques or money to me I can gift aid it in the donation. So far we’ve collected over £400. Thank you. FORCE have a friendly drop in centre at the hospital where we can chill with a cup of tea. Their volunteers come round all the cancer wards with free tea, coffee, sandwiches and biscuits for family and friends alike. Without this we’d be ordering lunch from cafes etc. They counsel people struggling and give massive support to families. They subsided my wig (which I’ll need with the next post-op chemo) and give free massages and beauty treatments for us patients. As our hair falls out and our faces pale,  these caring people become will invaluable to us keeping our spirits up.
The side effects of my treatment have started now and I can see why everyone told me to put on weight as I’m struggling to eat. I’ve been getting ideas from OPA and I’m experimenting with different foods to find out which travel easily through the radiated area of my throat. Anything warm and bland with no spices work. Luke warm sweet tea is good. The area at the bottom of my gullet is very sore inside due to the radiotherapy. Cold and hot drinks hurt too much and I have zero interest in alcohol. I’m doing my best to keep my weight up and polished off most of a huge cheesecake left over from the wedding which is great. I ate a Sunday roast in the pub. So long as I chew hard and eat warm food which doesn’t stick to anything then I can eat. But I am having towork very hard at it these days.
Also I’ve developed a skin rash on my arms and chest. Neil reminded me that our skin is our largest organ and all my organs are being battered by the chemotherapy. Out came Mole Valley’s cow’s udder cream today. I smiled as I applied it. I’ve got some expensive cream but it’s perfumed so maybe Mole Valley ( where every decent Devon farmer shops for everything a farmer needs) is the beautician of the day!!! It does make me giggle although I’ve only used it once on my arm. 
I’ve been affected rather painfully “down below” as the late northern comedian, Les Dawson would have confided whilst dressed rather badly in woman’s clothes and pointing south behind his baggy skirt. A fungal infection. Fortunately my GP ( aka Neil for prescriptions) ordered remedies for me to collect from the local dispensary so it’s already under control. My poor body is receiving a massive assault on my healthy tissues, but can you imagine what Deirdre is receiving? She’s being poisoned into extinction and burned alive by this machine below. She’ll be a shrivelled mess by the time I receive my surgery only to end up finally incinerated while Neil and I glide down Italian ski slopes in February. I’m excited already!!

 

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I did write a blog about the wedding from my chemo chair yesterday but I was too tired to think straight, so deleted my half hearted attempts. My ecstatically happy, yet sleep deprived, adrenaline levels had kept me going strong all weekend until late Monday when my energy levels plummeted. All I could do was sit and let the world work hard around me. There was so much clearing to do from the marquee, but my HUSBAND wouldn’t let me do a thing. I just sat.

Early Monday morning Cara, Neil and I went for the review with Dr Liz Toy, my oncologist. It was hard to keep on track as we were still bubbling full with wedding memories, but there wasn’t much to learn anyway. My treatment is going very well and my body is coping well with all the drugs. We’ll continue exactly as planned with the next 2 weeks of treatment.

Also, which I forgot to mention, a week or so ago, we were told that my surgery date was provisionally 24th October, subject to me being fit enough and subject to his surgery list, so we’ve pencilled that in.

My main side effects are insomnia and constipation and I do have a few rash like spots appearing, but nothing that others would notice. Apart from that I’m fine. We couldn’t decide whether my insomnia was wedding driven or something else, so she prescribed me some sleeping tablets. I took one last night and slept over 5 solid hours. That’s a first since my treatment began 3 weeks ago. I never let my lack of sleep worry me as I am in the privileged position of being retired and can take a nap any time I like, which wasn’t really an option in the run up to the wedding, but I always felt full of energy to get things done. Worrying about not sleeping will only make it worse anyway. It’s only since Monday afternoon that I’ve struggled with tiredness and thats already resolved with a decent deep sleep last night.

I still suffer terribly from constipation, but I’d deliberately stayed away from the remedies as I couldn’t even imagine the horrors of mad dashes to the loo in my wedding dress!! I did make an attempt earlier in the week, but I was so rock hard that I woke up with the pessary stuck to my leg!! I gave up after that. Deirdre made absolutely no impact at all on the wedding except that I can’t really enjoy alcohol any more as it burns my throat on the way down. But then, I didn’t want to drink anyway as I wanted to remember every single moment of our special day and I danced until midnight as I always do. (Our first dance was to Bob Marley “Don’t worry ’bout a thing as every little thing’s gonna be all right”. All 210 guests sang along.)

Today I took the remedies which worked within hours, so all my side effects are once more resolved.

I had chemo therapy and radiotherapy yesterday and we shared our wedding stories. We took flowers into the various wards as everyone wanted to know how the wedding went. I was totally exhausted on arrival, but after my enforced sitting for over 4 hours, I felt so much better leaving. Chemo days certainly have their advantages. They are allowing me to continue with my cold cap too. Mentally it was a little harder to get into my zone yesterday as I arrived with a headache, but now my goal is to keep my hair for Xmas. Fingers crossed. A lady, about my age, with beautiful long hair came to see me with my cold cap as she’d like one for her treatment. She seemed like a really strong positive character and I could assure her that its really worth it.

And I feel lucky. So very lucky. There are patients there much much younger than myself being treated for cancer, and there are some who won’t make it, but most will. Modern medicine is so fantastically effective these days. I absolutely know that after surgery and the following chemo, I’ll be fine, and I’m very happy to go through this process ensure that happens. I feel great and so so so very happy. I’ve married the perfect man for me and he makes me so elated and happy. Thank you Neil for EVERYTHING XXXXXXXX

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Deidre can wait! We had the most wonderful wedding on 2nd September 2017. Sorry about random photos, but I haven’t mastered this yet and I don’t have Neil’s family photos, but here’s a taster of our wondrously happy day.

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