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

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.

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

Tues 30th Sept I forgot to mention…

..a few days ago we met this amazing guy at the campsite in Bellac. He had cycled all the way down from Caliais and is on his way to Gibraltar. We have been travelling on the same roads and although they are pretty straight they are very undulating which must certainly make cycling a pretty hard challenge. He was previously a veteran himself and is now raising money for Combat Stress a charity that supports the mental health of these brave men and women. To find out more please visit Aaron’s face book page by searching ‘On yer bike son’ or following this link:

https://www.facebook.com/aaronjdebnam?fref=photo
Good luck Aaron!

Last night we enjoyed a cheese fondu party in Helga with our mates from a couple of vans down. Such fun!

This morning we are heading off for a campsite in a forest somewhere near Rouen. We have just noticed Sue and Angela set off already but we are a bit slower to get going nowadays so will probably be about an hour behind. Still the weather looks promising so we should be in for another good day.

Deborah x

Mon Sept 29th and we have wifi……

…hence the ability to update the blog at last.

We are at a very pretty free Aire in Chateaudun. It is in the shadow of an enormous Chateau and next to a river used for canoeing and kayaking. Unfortunately the excellent photo Colin has just taken for me won’t upload so you will just have to take my word for how pretty it is.

We have had a lovely few days house hunting with Sue and Angela, but after much deliberation they have decided to wait awhile before investing in the French property market. It was however a great experience seeing inside some, seemingly untouched for years, petite French Maison’s

We also spent a lovely afternoon enjoying a picnic next to a lake, reading, chatting to our good friends and watching the water activities. Photo’s will just have to wait.

Having enjoyed another late lunch of steak and chips with mange tout and a lovely sauce made from onions, red wine, mushrooms, redcurrent jelly and Roquefort cheese, we are having a little afternoon nap (again). This really is the life, the motorhome more than caters for all our needs and France is so well set that you are free to travel along until you are ready to take a rest. There will always be an Aire somewhere close by and if not a very reasonably priced campsite. I just wish we were as welcoming and as well organised in the UK.

We are thinking of delaying our channel tunnel ticket by a day so plan to travel back to the UK on Saturday. If it wasn’t for hospital appointments looming we would probably have stayed even longer, never mind there is always next time.

Love to you all

Deborah x

A busy week

At the beginning of the week I wasn’t sure how I would find the strength to achieve all that I had planned. Each day however I have been getting a little stronger and I am delighted to report all has gone very well.

My first challenge was to have an evening out with some old colleagues back from the days when I worked at the Lister Hospital. It was something I haven’t been able to do for some time now.  I was kindly picked up by one of my friends and we met up with the other three girls at a lovely Turkish restaurant in Hitchin. A good time was had by all.

The next day a shopping trip was organised with Pollyanna. Planning ahead I called Shopmobility at the Cambridge Arcade and booked myself a mobility scooter. I found this quite emotional as I just wanted to be able to wander around with my daughter, as I was able to do, less than two years ago. It was however very helpful and worked out much better than being pushed around in a wheelchair and gave me the independence I needed. It is a free service and you even get to park for nothing and once I got the hang of it I was whizzing around in and out of all the shops I could get into.

It was also our 10th Wedding Anniversary on Thursday, and I felt very grateful for all the wonderful times Colin and I have spent together. We really are soulmates.

Friday was spent cooking and preparing for a family lunch on Saturday and packing up the motorhome for our trip away. This was something I couldn’t have even dreamed of doing last week when even getting downstairs was still quite a struggle. It was also great to feel I was able to help out a little and not leave everything up to Colin.

Yesterday was a lovely day as we were joined by Pollyanna, Jem, Elliot, Lucy (still in her mummy’s tummy), my nephew Charles, my parents and my Aunty Mo and her partner who were visiting from Australia. It was very exciting to see Mo who has been a great support to me, from the other side of the world via the internet.

So here we are today travelling down to the channel tunnel. The sun is shining and I am able to put Myeloma to the back of my mind. I am enjoying life again and taking full advantage of feeling well for the first time in many months. It is day 73 (of my Stem Cell Transplant) and I can assure my fellow myeloma buddies that there is light at the end of the tunnel. This was something only a few weeks ago I dared not to believe myself.

So very soon, slowly we will meander through little French villages, stopping at local patisseries for fresh croissants and a baguette or two. We shall sample local wines and enjoy some Moules Mariniere and Frittes. Most excitingly, we will be meeting up in a few days time, with our best friends Sue and Angela, who are already in the Haute Vienne region in France. We have every convenience on board our motorhome and we will enjoy relaxing, reading and just spending time together. This really is the good life, long may it last!

Much love to you all and thank you for helping make this possible.

Deborah x
PS. Just stopped off for a fry up as we are so early for our channel tunnel train.

I spoke too soon

After boasting yesterday about my 30+ year record of not actually being sick, my record was well and truly broken. So much for all those anti sickness drugs! Still it wasn’t as bad as I feared, although I am in no hurry to repeat the performance.

I think today I shall just have yet another day of rest. Surprise, surprise!

Thank you for all your lovely comments yesterday.

Have a great weekend

Deborah x

Day 33 and I need to be kind to myself

I think I have been expecting too much, I just so want to feel better and able to at least get up and walk around the garden. I must just listen to my body that needs to rest after the trauma it has been through. From what I have heard and read  I am  probably a third of the way there. By day 90 I should be able to do much more and hopefully I won’t feel so nauseous. So patient I must be .

Yesterday  my day was cheered up by a visit from a friend and fellow myeloma sufferer. It was good to be reassured that all I was experiencing was very normal and as expected. Jet is a great inspiration to me as she takes life with both hands and gets the most out of every day. But she also rests when her body tells her to . It was great to be reassured that I will feel stronger and be able to do so much more in a few months time.

So most of my days are pretty slow.  If I have a bath that’s me done in for. Although at the moment I am enjoying some long soaks with the help of Epson salts, thanks to Jo and Lorna.

It is good to get visitors so if you are infection free and fancy popping around for a cuppa,  you will be most welcome.

On Thursday we are back down to the hospital which will be a good chance to get my latest blood results and check everything is going in the right direction. Fingers crossed all will be well.

Today my daughter and grandson will be popping in , it’s just a shame that I can’t get up and play with Elliot but that time will come and he is very good and seems to understand,

Have a good day and thank you for your continuous words of support, I know I am not alone and I will get through this time.

Deborah xxx

Aug 1 – Day 22

Dare I say it, or even whisper it? But I may just be let out of here tomorrow. Over the last 24 hrs my temperature has shown signs of settling down. All is going in the right direction. Now my next challenge will be climbing the stairs back home. My energy levels are zilch although I have tried to walk a little each day.

The other little problem is my appetite. I must have lost over a stone but I have no desire for food, in fact the thought of anything makes me feel quite sick.

Still, I just can’t wait to sleep in my own bed, many more nights here and I will be getting bed sores.

So fingers tightly crossed

Deborah xxx

P.S….it’s confirmed today I get to go home.