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

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

The little hiccup grew into a bigger problem

So I have been stuck in my local hospital since Monday.

It all started well with a quick pass through A&E to be seen by the doctors. After being there for quite a few hours, Jem kindly popped in with sandwiches, crisps and biscuits for Colin which he really appreciated.

I was eventually admitted to the short stay ward. Here the welcome wasn’t quite so good starting with the nurse saying “put him in the side room, Oh I thought it was a man”     I must admit however after tweeting about my experience all complaints were very quickly and professionally dealt with, and I was seen by a very caring Modern Matron.

I have since moved to a respiratory ward where the care is excellent and the nurses very caring and professional.

Now I am waiting for another scan. I have already had a chest X-ray, heart scan and CT scan of my lungs This time they are looking at my liver, kidneys, spleen, gall bladder and abdomen. A thorough MOT.

It looks like a chest infection is responsible for my fluctuating high temperature, but they are not ruling anything out. So we are going through the rounds of tests and different combinations of antibiotics to see if they can find out what works.

I did have a lovely visit from the Haematology nurse and doctor who are liaising with UCLH.
And yesterday the Pallitive care nurse popped in to see me, which helped. As well as visits from Polly, Mum and Colin. And a lovely surprise parcel from Kate of some leggings that might actually fit. I must have lost two and a half stone so most my clothes literally fall down!

It’s a shame as things were going so well and I was slowly recovering from the transplant, but apparently my immune system is still very compromised. Sadly we missed seeing a show in London with Sue and Angela and to meeting up and talking motorhoming with our friends. Never mind I expect there will be other times.

Tomorrow we are due to pick up our new car but I doubt I will be able to share that experience with Colin now. It looks like I may be here until MONDAY, I do hope not.

There is no TV, not that I have the energy to watch it anyway.

Trying to keep my pecker up!

Deborah xxxxxx

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