Things are getting easier

I am very pleased to report. After our marathon day at the hospital last week, where we didn’t get home until 7.30pm I think today will be quicker.

Last week was pretty rough and I got very fatigued. This week is much better. I am still very tired and have to limit my visitors but it is lovely to see people as long as they are infection free. My immune system is pretty low so I must be extra cautions at the moment.

So back to the hospital next week but no blood transfusion needed today.

People have been so generous. This week I have received 2 bunches of amazing flowers and a bottle of wine. I also had a surprise gift of a jigsaw puzzle which should keep me busy.

Allison also popped in with some delicious cake and biscuits and Shirley made us a Christmas cake.

It was also lovely to see my niece who I haven’t seen for about 12 years. She divides her time between Cambridge and her home of birth Hong Kong.

Also we received a load of logs yesterday that will keep our Rayburn going.

Toby also brought me some sparkly Christmas lights and some local friends from the village kindly put them up. They bring me so much joy.

Kate and her partner visited last week so it was great to see her.

Mum has been a great help doing all my ironing and shopping. Yesterday she cleaned out the fridge and freezer. We also sorted out all my winter and some clothes and the ones that are far to big for me now as I have lost quite a bit of weight.

We are loving our new Mercedes mobilty car but now must sell our A class Mercedes which is in good condition with a full service history so if any one is interested please let us know.

I have done most of my Christmas shopping on line as I haven’t ventured out yet but I am very pleased with myself.

Well I must thank you once again for all your help and ongoing support. It really does make a difference.

Love to you all
Deborah xxxxx

It’s all pretty confusing.

I am also rather fatigued and pumped up on a numerous regime of tablets. I am very very disappointed that here I lay in bed with the little energy I hoped for. I will try and get dressed however  and sit down stairs for a short while today.

It was great  to see so many friends, family and colleagues in hospital. They have all been  so hopeful and positive and bearing such lovely gifts.

i am hoping the new drug regime will do the job. One of them has got to work.

We were very frustrated that my chemo drugs were left behind at UCLH, after such a long wait on Friday and poor Colin had to go back down to London the next day and collect  them, meaning I missed a dose of my Revlamid. Nevertheless these things happen.

i received a lovely taster box of chocolates from Aunty Mo this week and some steak and lamb chops from my brother and family which was very tasty. Plus shopping and cleaning from mum and friends, Sue and Angela, so I am really being quite spoilt.

it also seems I will be getting some pretty Christmas lights from Toby, although Colin is rather embarrassed that mum has asked some lovely villages to help put them up as its not an easy job!!

We are just needing to take it easy at the moment, so there may be not much blog writing for a while.

Love to you all

Deborah xxx

 

This is not an easy post to write….

especially as I want to be sensitive to my readers, all those family and friends I love.

..On July 10th, as many of you know, and helped to see me through the process, I had my first auto stem cell transplant, and on October 27th I got the all clear. No Cancer showing in my blood or bones. I was in remission. Hip Hip Hooray. I have heard that remission can last from about a year to 17 years! Being the dreamer I was counting on the 17, plenty of time for that elusive cure to be found.

On that same date of Oct 27, 2014, I was spiking a temperature and developing a cough, I started on some antibiotics and was told to go to my local A&E if things didn’t improve. I was admitted straight away  to the Lister Hospital. which you have probably already read about on my previous blog, but to recap the medical and nursing care was human, caring and professional, I couldn’t ask for more empathy and involvement in my care. Thank You.

@enherts

The Lister ran every test possible into my respiritoy problems and more, but many more questions were produced than answers. So it was agreed by all to transfer me to UCLH on Nov 7th.
I am back on T16, bed 20, where I had my original transplant.
It was good to see old friendly faces, and Colin is able to stay with me here.

They immediately started running more myeloma related tests and our biggest fears were revealed. After only just hearing we were in for a nice long remission (or so we hoped), my blood and another bone biopsy showed the Cancer was back with an a vengeance. The doctors were as shocked as we were. The bad news is no more stem cell transpnts for me. There are however a couple of drugs and maybe some trials available but it’s all a bit hit and miss

Without sounding too melodramatic we are emotional drained and devastated, but we will pick our selves up. It was good to have mum and Kate here to hear the news and support us but we are sure it’s equally as difficulty for them to hear,  Even the doctors and nurses hugged me tightly and said how sorry they were. Many of them have been on the journey with us and nurse Kate even delivered my new Stem Cells, wishing me happy birthday 😢

So what’s next? A new regime of continuous chemo will be worked out with all its delightful side effects and no doubt a ban on various Chistmas tipples! My temperature seems to be settling, so once a few more tests are carried out and my meds are sorted I may be home by Thursday and get a drive in my new car. Although now being put onto a load of strong drugs, I doubt I will be actually be able to drive it my self.

I know with all your help I will find a way through this. I need you more than ever now.

Love you all

Deborah xxx😕👼👸😻👪💏🙋❤️💗💎😕😷☺️🐾🌻🌞☀️🌈🌠🌏🌎💐🌸🌷

The great, the hiccup and the next step

Well let’s just get the not so good out of the way (the little hiccup). I seem to have got myself an infection causing my temperature to rise, lots of coughing and a feeling of even more exhaustion. After a trip to A&E on Saturday when in hindsight I should have been a little more patient and hung around for the doctor to examine me, things slowly got a little worse. I thought I could hold off until today’s appointment with my consultant but the specialist myeloma nurse insisted I came in yesterday. At least I could get the two types of antibiotics started.

The GREAT news is that there are no detectable paraproteins in my blood and nothing showed up on my bone biopsy. I think this would qualify me for the title of remission.

For some this could last anywhere from a few months to many, many years. I have heard of people who have had 17 years of remission following their stem cell transplant.

Unfortunately my myeloma is a little bit naughty, it has shown to respond well to treatment but has quite quickly returned. I have also had those pesky couple of masses on my spine that didn’t show up in my blood results, this is called non secretory myeloma. So baring all that in mind it looks like I will need to start on maintenance treatment. I am not sure what form that will take, but it will be some type of chemo together with its list of side effects, I’m afraid.
Let’s wait and see, at the moment I shall wallow in the good news for now. And with the Stand Up 2 Cancer campaign raising over 14 million pounds for Cancer research a cure could be just around the corner.

I am awaiting a call from the nurse to see if I have to go back down to London again today. Honestly a day in bed catching up on The Apprentice would be far more preferable.

There also seem to be a few hiccups with our new car that we still hope to pick up on Friday. Nothing is ever easy,

Mentally my spirits are pretty good, after hearing yesterday’s good news and especially after catching up with an old colleague on Tuesday and taking part in a school nurse Twitter chat. It makes me feel I can still be of some use and reminds me how I need to get on with finishing my book on A guide to Childrens Mental Health for Parents. It will have a better title than that though.

You would think that being retired, you would have so much spare time but it doesn’t seem to be the case. I suppose it’s 8am already and I would have done a couple of hours work by now. Time really is just a concept and it’s how you use it that matters. Pollyanna is living with us at the moment, she leaves early and comes home late, still full of excitement and passion, She really has quite literally stepped into my shoes as I noticed my special Russel and Bromley shoes on her feet! I am so proud of her.

On Monday we took Elliot to Woburn Safari as it was the last chance before we got our new car. It was a lovely morning as we drove around and the monkeys scrambled all over our roof and bonnet. Elliot was so excited and it was an easy trip for me to manage as most of if was just sitting down in the car. Bless him he really is a joy and such a credit to his mums excellent parenting.
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Lots of love to you all
Deborah x

Day 100 and look who’s home.

I must admit there were times I didn’t think I would reach this day but here I am, a hundred days on from my stem cell transplant. My hair is growing, I have eyebrows and eyelashes and I even have had to shave my legs! Fatigue does still remain a bit of a problem making it difficult for my body to do what my heart and mind desires but everyday sees an improvement. Next week I will get the results from my bone marrow biopsy and my latest blood counts. Sadly I am a bit concerned about my heamaglobin levels at the moment, as I am struggling a little with my breathing causing me to cough more than is normal I just hope it’s nothing too serious. Having said this I can happily look back and see how far I have come since my rebirth on July 10th. Just look at the fun I can now have with my lovely grandson.

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And look who’s home.

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Frodo has enjoyed staying with Colin’s parents up in Weston but we have missed him. He is such a lovely relaxed boy to be around. The only time he is a bit naughty (only for us!) is at night. Wherever we try to settle him down he will bark several times in the middle of the night, and get us up the little minx. I think he is happy to be home, he loves it in the motorhome and going on long walks with Colin but is getting pretty old now. We are not sure of his exact age as he was a rescue dog but we think he’s about eleven now.

Yesterday was a real treat for me as my sister is back from Somerset for a few days and we had a lovely visit from mum, my Aunty Mary and Uncle Ian from Cornwall. It is so good to catch up with people again. I didn’t realise quite how I would miss the social interaction I used to have when I was at work. Thank you to those of you who have stayed in touch it really does make a difference. I am trying to fill my diary whilst I am feeling so much better with catching up with old colleagues and friends. If you fancy popping over for a cup of tea and a chat your company will be most appreciated.

Recently I caught up with an old friend and colleague who since retiring makes the most beautiful silver jewellery. Ruth also runs classes and workshops which I am hoping to join in with sometime soon. Take a moment to look at her website http://www.ruthlewisjewellery.com

More exciting news – next week we pick up a brand new car and not just any old car but a B class Mercedes no less!
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We still can’t quite believe it. This week I received a letter from the disability allowance which awarded me the higher amount of mobilty money entitling me to take part in the mobilty lease scheme. There was a bit of a problem at first, as I received the letter four days later than the amount was awarded resulting in it being four days short of a full year and at first Mobilty wouldn’t accept the claim. Colin however called them back and they kindly changed their minds. We did however have to choose a car from the hundreds of models available pretty quickly. We tried out a few and this car seemed to be the most comfortable. It uses my whole allowance and we had to put a down payment of £3,000 due to all the extra bits we wanted but I think it’s worth it and we have got our car to sell so that should more than cover this.  I am so excited as it has all sorts of fancy things like heated black leather seats, lumber support and a reversing camera. I shall be needing that especially as I haven’t driven since I was diagnosed almost two years ago now. We pick it up on Friday so only one more trip down to London in our old car. Having said all this, of course I would swap it in a trice to be Cancer free.

Today we are meeting up for lunch with my good friend Jane who has moved recently to work as a health visitor in Guernsey. It will be great to hear all about her new life on the island. I also have a coffee date with another old colleague on Tuesday, so that and the car will be a good distraction from the hospital appointment on Thursday.

As I regain more of my physical health the challenge is now to stay on top of my mental well being. I know all the tricks of the trade but applying them to ones self is never quite so easy. I want to do more than my body allows which can lead to frustration and disappointment. I need to give myself a kick up the back side sometimes and remind myself just how lucky I am compared to many people. I also have such a wonderful circle of family and friends many of which I have only ‘virtually’ known since writing this blog. People from as far off places such as America, Canada and Sweden. How lovely it would be to actually meet up and thank them in person  for all their support. Maybe I should add that to my dream list.

I would like to thank all those that took part and donated to Stand up to Cancer which was televised on Channel 4 last night.. So far they have raised £14,520,756 A 100% of which goes to Cancer Research. This may just be what’s needed to find a cure for Myeloma so fingers crossed.

Meanwhile I have some serious living to get on with.

Much love to you all

Deborah x

It will be no laughing matter…

…if the new process doesn’t work. Today I am off for my seventh bone biopsy. Three of these have been without sedation the rest I have been put to sleep. I can tell you it’s very painful without. Apparently now UCLH has a new process which no doubt saves time and money. I shall be having a local anaesthetic and laughing gas! I can promise you I definitely won’t be laughing if it hurts too much.

I did receive some good news yesterday, when I spoke on the phone to my myeloma nurse. Apparently my paraproteins are now so small in numbers they are undetectable. This is a victory for my stem cell transplant and hopefully the biopsy will further confirm this.
The news to me is reassuring but not entirely unexpected. I have become to know my myeloma and it does tend to respond well to treatment but unfortunately in the past it has shown to come back quite quickly and with an even stronger fighting spirit, but perhaps this time will be different, I do hope so. I will also need to have another MRI scan at sometime to find out how the two masses that were on my spine are behaving. The radiation did a good job on them so I hope they have remained just shrivelled up little spots that are staying put.
I won’t be seeing the consultant today as he wants to wait to have the results of my bone biopsy before discussing with his colleagues the next plan of action. I pray for a miracle to happen and a cure to be found very soon. Meanwhile I have an important job to do and that is to get on with living.

Those that know me well know that I have always been a very positive person dreaming up all sorts of ideas for the future. I am trying very hard to still be that person but I must admit the last three months or so have knocked me for six. I now try to live in the moment and to enjoy the time, whilst physically feeling so much better. I can’t pretend this is always easy and I have so much admiration for those that do this and grab every moment of life living it to the full. Maybe I am expecting too much of myself as it’s still early days yet, being only 3 months since my stem cell transplant, and I still get pretty exhausted fairly quickly. Thinking back I suppose It also didn’t help that I always lived in a bit of a bubble, death was not on my agenda and maybe like many other people, I imagined myself as being immortal. When I received my diagnosis all that suddenly changed and I was forced to face what is the inevitable for us all I am afraid. I watch with great admiration, the courage of fellow Cancer sufferers who face this with such dignity and courage. I pray for a faith that will provide the promise of another place and listen so hard for a reassuring voice that will make it all alright. I won’t dwell anymore on this as I don’t want to depress myself or you dear reader instead I shall concentrate on how lucky I am to be alive today even if I do have to travel up to London for the dreaded biopsy!

We had such a good time away and we will plan many more trips across Europe. This week I have met up with an old friend and colleague and was so excited to find out she was a fellow motorhome owner. We talked about our travels, chasing winter sunshine and the advantages of taking your home along with you. I can’t wait to meet up again.

I have also been pretty busy this week doing some work on another mental health project. This has been a great distraction although much harder work with my rather less able chemo brain. It did help however working on it with Allison and a piece of her delicious cake.

Pollyanna is staying with us at the moment and is great company when we see her. She has started a new job managing the trauma service in Cambridge. She works so hard leaving early, getting home late and then getting back on her laptop and working more. She is so passionate about her job but I reminded her of the importance of a good work life balance. Pot calling the kettle black, Colin quickly pointed out, surely I wasn’t that bad? It is hard when you enjoy your work so much and it still saddens me how mine had to come to such an abrupt end. Still I am still manageing to keep my hand in and as my energy increases who knows what will happen. Oh yes and I still have several books to write. Could that be a bit of my old self coming back?

The sun is shining on our journey down to London as I attempt to tap this out on my iPad whilst not getting car sick. I feel relaxed and happy, writing the blog is very cathartic and I have my soul mate by my side. I shall sign off now so we can chat about a possible trip to Holland and a drive up North to enjoy one Aunty Judy’s delicious Sunday lunches.

But not before leaving you a lovely picture of my grandson who is spending the week away in a caravan by the sea.

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Have a great day and take a moment to appreciate the little things around you.

A friendly smile can make all the difference so here are a few just for you…

😃😀😍😉😜😄

Deborah xxx

Just a quick update.

I just wanted to give you a quick summary on the weeks events but will try to write more in a few days time.

It’s all happening here!  Firstly I found out that our second grandchild will be a little girl which is great news. She isn’t due to come and meet us all until around February 4th  but we are very excited to see her.

Wednesday and Thursday were pretty tough going. On Wednesday we received some sad news about a fellow myeloma friend. We were both also very anxious about the hospital appointment on Thursday. And Thursday turned out to be a very long day indeed, with the clinic running almost three hours behind and us getting stuck in rush hour so the usual home journey took a couple of hours longer than usual. The news at the hospital however, was fairly good, as my consultant gave us hope that there were still some treatments that we haven’t even yet tried. My usual blood counts were also pretty normal but I wont get to know about how my stem cell transplant has worked until next month, when I will have more tests and a bone biopsy. The best news however is that we got the go ahead to go on holiday to France before my next appointment in October. So we are excited to get our motorhome prepared.

We had a really enjoyable day on Friday at the Shuttleworth Steam and Country fair and Colin got to have a ride on an enormous traction engine whilst I relaxed and chatted to an old friend who I was so happy to hear had the all clear following her treatment for cancer. It was such a good day out, we hoped to return on Saturday evening and camp there but I just felt too exhausted from all the excitement.

Now there is lots of organising to do with some exciting things happening next week, so I must get on. Not that I have hardly any energy still to do much, but I get a little more strength back each day.

Enjoy your Sunday

Deborah xxxx