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

Just a quick update..

I feel pleased that I have enough strength to write a few words today.

I have even made it downstairs with the help of Colin. Each little challenge I achieve  makes such a difference. I just need to pick my timing as my body is very weak .

I do feel hope and need to give the new chemo drugs a chance to work. It’s early days yet.

Your strength is my strength. I have been wrapped in a blanket of love and appreciate all your comments even if I don’t always respond. It all makes such a difference to my mental well being.

 

I m looking forward to Christmas and the birth of my second grandchild in February..

I received these beautiful flowers from a kind friend, what a lovely surprise, and this lovely picture really made me smile.

My friend Allison also visited with homemade biscuits and cake. I am really being quite spoilt

Today my sister is coming to visit from Somerset, which I am really looking forward to.

It’s good to feel brighter in spirits today.

Thank you I feel your hand in mine xxxx

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.

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.

And look who’s home.

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!

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

Writing this blog…

…Is not always easy. When I am too tired I just don’t have the energy to do so.  It has however been very helpful at times and I am proud to say that since starting it I have had over 65,000 views. I have always promised to be honest and open and use it as a way to share my experiences of my health journey and seeing the NHS from the other side, and at times share the knowledge and experience that I have gained in the field of mental health over the last 30 years or so.

Through the blog I have made new friends and caught up with old ones. I have been truly overwhelmed by your support and generosity, this has helped me through many a difficult time and I have never felt alone with you by my side. My audience is varied from family and friends to fellow Myeloma buddies from all over the world. Sometimes knowing that my parents, children, brother, sister, husband and close friends read this has made choosing the words I write quite difficult. Although I have always promised to be honest I am very sensitive to their feeling. I never want to worry or offend, to make people feel even more miserable by sharing my lowest points but I think I usually manage to strike some sort of balance, I do hope so anyway. It is also important for me to talk about mental health, if we are ever going to reduce the stigma that is still around.

So here goes. This last week, I have felt particularly low both physically and mentally. At times I wondered how much more suffering I could take, especially after the five attempts of digging around to find a vein that wouldn’t collapse on Tuesday. I was particularly sad at having to go back into hospital again and it was so hard to watch my husband having to witness my pain. When you are used to being so independent it is difficult to then have to rely on others for even your most basic needs. Physical ill health has a direct link with your mental and emotional well being, so my usual positive self had disappeared and I felt more overwhelmed by sadness than ever before. It pains me to admit it but I started to think that the world may be a better place without me and an end to all this suffering would be a welcome release for everyone. I am sorry to share these thoughts but apparently they are quite normal for someone who has experienced the trauma that my body has been put through. I am pleased to say today I am feeling much more positive and emotionally healthier.

Myeloma is a particularly nasty cancer and everyone’s journey is very different. There is no knowing how long any remission will last or what will happen next. Some people are luckier than others and I have read stories of people being in remission for many years. At my hospital visit yesterday my specialist nurse briefly discussed the likelihood of me having to continue on some sort of chemo maintenance drugs due to the aggressive nature of my myeloma. If it’s what’s going to keep me alive so be it. The good news from yesterday’s visit is that my white blood count and my neutrophils are just in the normal range now so my body should be able to fight it’s own infections once again. My red blood count is still a bit on the low side which probably accounts for some of my tiredness.

I am listening to my body more and may just spend today in bed. I really do need to rest so that the healing can take place. Eating and drinking is still quite a challenge unfortunately due to the constant feelings of nausea. I haven’t however broken my 30+ years record of actually throwing up although I got pretty close to it in hospital.

I really want to thank you all again for your continuos support. You are my strength when I am at my weakest.

Just look at the lovely bracelet Jem bought me on Tuesday, it was so sweet and thoughtful of her.

With all this love around I know that each day I will become physically and emotionally stronger.

I am forever in your debt.

Thank you

Deborah x

July 19th- Day 9

As you can see I am not feeling so good. Temperature rose to 39.3 at one point. Needed oxygen, platelets and blood.
But besides all that my mouth feels a little better.
Riding the storm
Deborah x

Admitted to the ward

I arrived at Ambulatory Care on Thursday as Colin checked into the NHS hotel. Unfortunately I had a temperature so I had to be admitted to the ward. It’s not quite the same as staying in the hotel room with all it’s comforts but I do have a large room here with a bed that Colin can sleep on.

My temperature goes up and down but is up again this morning. I have an infection and I am now Neutropenic. This morning I will have the blood transfusion of platelets, as my platelet count is low. My white blood cell count is low too so I am open to picking anything up.

Hopefully the anti biotics which I have been having pumped into me since Thursday will start to bring the infection down soon. I have an upset tummy and a rather nasty mouth infection but beside that I am in good spirits .

I was especially cheered up by this lovely card that arrived at the Cotton Rooms yesterday.

Thank You so much Sharon, Tony and girls. I have had a few lovely cards recently and I do so love getting post. I have entered so many competitions lately that I am just waiting for my prize winning letter to come in the post now.

At least it’s not so boring here on the ward as there is always someone popping in to do something. I shall be staying on the ward now until I am well enough to be discharged home, which I hope won’t be too long. The doctors reckon I will be here for about a week but it will depend on how quickly they can bring this infection down.

The most annoying thing is you have to pay for the TV and it costs about £10/ day which I think is pretty expensive if you are here for a week. Of Course all this was free in the Cotton Rooms. And there is no lovely breakfast here just soggy toast! Not that I feel like eating much anyway, but poor Colin misses out.

Like I said I am in good spirits which is the main thing. Keeping my mental health in check will help my physical body to repair.

Last night I was able to enjoy news via Twitter, from the Nursing Standard Awards. It brought back some very happy memories. It was lovely to see pictures from the event held in the Savoy hotel. I was especially delighted to see school nursing being recognised. I hope our teams in Hertfordshire will think about being nominated next year.

I think I shall get on with writing some more of my Children’s Mental Health book for parents, today.

Have a good weekend

Deborah x

Nice surprise to see my name in print.

The other day I received a book in the post which to be honest I thought was a catalogue and just put to the side and almost into the recycling bin. On closer examination it was this. I had forgotten I had written a chapter for this book with a colleague some time ago. It includes the BrainBox, LAMBSS and the Visual CAF, tools I developed during my career as a nurse working with children’s mental health. It’s available as a paperback or kindle version through Amazon and contains a number of physical types of clinical assessments as well as my chapter on mental health assessments.

Other news is that today we are having a carpet fitted on our newly painted hall stairs and landing and going into our bedroom which is very exciting. The house is really coming on and we feel much more organised. It will be great to have this done before our weekend away and then my trip into hospital.

We are really looking forward to a couple of nights away in the motorhome before my hospital admission. I must admit I am starting to feel a little nervous about the prospect of subjecting my body to the large amount of toxins it’s going to receive next week but the job has got to be done. Yesterday we were back down to London again where I had some tests on my heart and all seems pretty healthy there. It appears that I am a bit of a mystery to my consultants and I am confused about my para proteins as my cancer markers seem to be low but the cancer is still so active somewhere in my body. I don’t really know how they know this other than because of the mass that grew up around my spine that showed up on the MRI scan. Hopefully the last radiation treatment I received on Tuesday has got rid of most of this. The pain killers are working well although I am feeling a little sick which was a side effect I was told I could expect.

I get to see my lovely grandson again this afternoon who always brings such joy and laughter along with him.

Today will be a good day.

Enjoy yours!

Deborah x

Thank you Mel

When life throws you a bit of a dud card if you are not too careful you can start to feel pretty sorry for yourself and find it hard to notice the good things happening every day. I think this is understandable and I have learnt that it’s OK to not feel up beat all of the time.

I must admit I have been starting to get pretty fed up with all the trips to London for chemo and the numerous pills and potions I seem to have to take, so I was very grateful for a visit from a friend that I have known for over 20 years (can it really be that long?) and it reminded me about all the things I do have to be appreciate of.

Take yesterday for example, although both Colin and I are full of colds we enjoyed a lovely picnic lunch out together in our motorhome. Returning home I then really appreciated a most relaxing bath in my Hollywood bathroom, made all the better for the rose scented candle and the Lush bath bar kindly given to me by Mel on Friday. I appreciated it all the more because up until a couple of weeks ago I had forgotten what is was really like to enjoy a long soak in a bath. Our previous downstairs bathroom is less than welcoming to say the least.

I am very grateful for old friends like Mel who take time out to visit and share time with me. New friends who send little messages and positive words and Best friends who are there through thick and thin. (You know who you are)

I really do appreciate (although I worry I may not always show it), my family, like my special mum who despite her own health issues helps out with most of our shopping and ironing. My sister who even when she isn’t just down the road I know is really just a phone call away and is someone I can really count on. And my brother who is there for me when I need him. My two most special daughters for who nothing is too much trouble and make me so proud. And for Colin’s parents who will help out by looking after Frodo whenever we need a break. Not forgetting all those other family members that show their kindness in many different ways. And most of all the joy that my grandson brings to us.

I appreciate living in the most beautiful surroundings looking out on to green fields. It is the home of our dreams and never a day goes by without both Colin and I commenting on how lucky we are to be living here.

I appreciate that I am still able to share my mental health knowledge and skills and feel so excited that we had an order for six more BrainBox resources this week. We have also now completed three booklets on Anxiety, Phobia’s and Anger with have another six almost finished. Then there is my book for parents on Children’s Mental Health a ‘Taking Control of Anger’ programme and ‘Bright Stars’, a self esteem programme to make available yet.

So do I really have that much to feel sorry about?

My cancer is responding well again to treatment with only a few side effects and I am halfway through the chemo cycles now. A bit of radiation on my back should alleviate the problem on my spine.

If all goes to plan I should be well enough for another trip down to Bordeaux in time to catch the marathon again on September 13th. It’s something to aim for but I do now know that Myeloma doesn’t make planning easy.

Thank you all for sticking by my side and helping me to get through the more difficult times Family, friends, colleagues and sometimes complete strangers, even the little things you do make a big difference.

Deborah. X