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

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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.
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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 arrived back on UK soil….

…and the sun is continuing to shine. We left France at 10.06 (French time) and arrived in the UK at 9.35am. We really are time travellers.

We have had a lovely time away and if it wasn’t for the looming hospital appointments we would have liked to have travelled further down south and perhaps into Spain or even across to Portugal.

For now we are just grateful for having the energy and better health to have been able to have spent the time away we have had. The motorhome makes things pretty easy going as we have everything we need with us. Most stops we made were either at free Aires or just a few Euros each although it was good to be able to stop off at a campsite for a couple of days at the more pricely sum of 18 Euros per night. We only needed to fill Helga up twice with diesel at 1.24 Euro/ litre which works out about 99p and we still have more than three quarters of a tank left, so we are pretty impressed with Helga’s performance.

It was also a bonus to be able to enjoy the sunshine and a glass of wine or three with our good friends. We had great fun French property hunting together before the idea was abandoned in favour of more travelling around in our motorhomes. We also got to visit Futuroscope again which never fails to impress us.

Here are a few photos that I wasn’t able to upload from France although some of you may have caught sight of them on Facebook.
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Thank you again to my ex colleagues for my retirement gift of Euros which helped make this holiday possible. We both really needed this break and feel much better for it. Let’s hope there will be many more motorhome adventures to come.

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