Up and down on the Rollar Coaster

Well this week has had its difficult parts to put it mildly.

It started off ok. Last weeks hospital visit with no blood transfusion ment we were home pretty quickly. Home at 3pm is much better than 7.30.

The next day I planned a shopping trip and was so exited as it had been months since I had gone anywhere other than the hospital. I did very well visiting two shops until, in the afternoon at home, I became rather manic and completely exhausted myself by frantically trying to do some craft work which sadly I had to abandon.

The next day I had to call on mums help to get up the stairs at the Cancer Hair Place. I really don’t know how I managed it?

Friday afternoon took a turn for the worse. My temperature soared and to avoid hospital I did all I could to bring it down. Wet cold flannels, fans on full blast and all our bedroom windows were opened. Not forgetting regular doses of paracetamol. We were all pretty worried. The Hospice girls turned up with a commode and zimmer frame. Both of which are a help but represent how the Myeloma journey is progressing. They will both be banished from sight as soon as I start to feel the positive effects of the Revlimid.

On Saturday a whole lovely army appeared including, a district-nurse team to help give me a freshen up. Then another District nurse came along.

By Monday I felt slightly better and my temperature had gone down thank goodness.

I was then visited by Amanda, my cousin is currently living in Dubai, so Amanda was her ambassador. It was a lovely peaceful experience with some chatting and prayers. I, as Colin were very appreciative of her visit.

Well today IS going to be a good day as it is Elliot 3rd birthday. They will pop in with a cake but not stay too long as sadly I get so exhausted.
The first challenge is to get downstairs. But I’m slightly stronger and I could be pulled down on a blanket. How I will get back up again I don’t know.

I just need to get my MoJo back in time for Christmas

Happy 3rd Birthday Elliot we love you so much xxx

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

image image

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

The lights look beautiful.

Thank you , I don’t think it took so long to put up and both Colin and I were very grateful for the help.

They are hard to photograph but look very pretty.

I also had a lovely surprise  from my youngest daughter Jem, who bought us some special bedding and has treated us to some tasty take aways.

Spent most of the afternoon sleeping probably as I had just finished a four day stretch of steroids.

Deborah xxx

 

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 last ten days..

…have been pretty rough going, bringing up more questions than answers. I am thoroughly exhausted by it all. Each day I hope for a little more strength but instead feel weaker.

But Thank you for all your kind messages, emails and thoughts, I will get back to replying to them all when I feel stronger. But just to say they are much appreciated

I had a Brochoscopy on Tues. Not the most pleasant of experiences but it was helped along with a complimentary therapist, for which I was most grateful.

The ward is lovely but I miss my opposite bed buddy who was always smiling. I can’t fault the nursing staff always vey kind, caring and professional here on 11a South.

Sadly I can’t see Jem or Elliot under these circumstances, but the when visitors do come I feel pretty exhausted very quickly. Still it’s good to see people and breaks up the day.

Not a lot goes on here but at least I have a good view of the nurses station which is better than a blank wall.

So why am I still here? Through all the various tests, blood cultures, scans act they can not find the route of the infection. But my temperature is regularly rising to 39.5 (103f in old language) this is what really pulls me down, I can cope with the coughing fits!

If things don’t improve in the next couple of days I will be transferred by ambulance to UCLH. Here they will carry out a PET scan, probably the only scan I haven’t had. It involves a pretty high dose of radiation and can pick up on all sorts of things even dementia!

I just really want to get home and be with my husband.

I shall just have to continue once again to be a patient patient.

From my window on the 11th floor it looks like you have had some good days, but perhaps we are now starting to enter winter.

Oh well soon I will get a ride in my new car, that’s something to look forward to.

Love to you all

Deborah xxxx