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

Filed under: emotional wellbeing, Myeloma

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…

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

Filed under: French travels, Myeloma

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

Filed under: French travels

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

Filed under: French travels

Thursday Sept 25th and th sun is shining.

Here we are at Futuroscope. I think it is probably our eighth visit here and as always it brings back many happy memories of previous visits with the girls when they were about eight and ten. On this occasion we are enjoying some time together with Sue and Angela. We met here yesterday afternoon and shared a few glasses of vino together before settling down for an early night.

We were at the doors of the park as they opened at 10am and with the help of my disability badge were given priority access to all the major attractions. I even managed to hire a mobility scooter to save Colin pushing me around in the wheelchair. The only disappointment was that the magic show was cancelled due to some technical hitch.

We have now come back to the motorhome for a cup of tea and an afternoon nap before the evening show. All is going better than expected and we are really excited about going to see the French house tomorrow, that Sue and Angela are just about to purchase.

We are managing to eat pretty well too and cooked up a great steak meal on Tuesday I even remembered the essential red current jelly!

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Time for that rest now before the evenings exciting events.

Deborah xxx

Filed under: French travels

Mon 22nd Sept 2014 Bonjour from across the Channel.

Travelling to France through the channel tunnel is the way to go. It was so quick and easy. No sooner had we driven on to the massive train and undone our seat belts it was time to start up again and head for our first Aire. It literally took 35 mins and because we managed to get on a much earlier train we were in France by 2pm (3pm French time).

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Our friendly satnav successfully guided us through pretty country lanes to our first stop only a short distance from the boarder. It was a pretty quiet location on a farm not that dissimilar from home. There were about eight other motorhomes there already and a few more arrived later, all of them French. For 5 Euro’s a night it was a bargain and we were especially delighted to find out that we could still get English TV so managed to watch the first episode of the new series of Downton Abbey.

We are now enjoying a beer in the sunshine at another Aire in a little town called Serifontaine. Unfortunately it’s too far up a steep hill to walk into the centreville so I shall have to wait until tomorrow to visit the local patisserie.

Internet is hit and miss with our Mifi and uploading photos seems to take ages so if you don’t hear from us blame it on the web.

Thank you for all your lovely comments.

Deborah x

PS. Jo, it would be lovely to meet up with you and Keith but I don’t think we will make it that far down south this time around. We hope you both have a great time away it was fantastic to read that Keith is feeling so much better. Let’s hope we can both enjoy plenty of French wine and good life for some time to come. XXX

Filed under: French travels, Myeloma

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.

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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.

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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.
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Filed under: French travels, Myeloma

Just a quick update.

I just wanted to give you a quick summary on the weeks events but will try to write more in a few days time.

It’s all happening here!  Firstly I found out that our second grandchild will be a little girl which is great news. She isn’t due to come and meet us all until around February 4th  but we are very excited to see her.

Wednesday and Thursday were pretty tough going. On Wednesday we received some sad news about a fellow myeloma friend. We were both also very anxious about the hospital appointment on Thursday. And Thursday turned out to be a very long day indeed, with the clinic running almost three hours behind and us getting stuck in rush hour so the usual home journey took a couple of hours longer than usual. The news at the hospital however, was fairly good, as my consultant gave us hope that there were still some treatments that we haven’t even yet tried. My usual blood counts were also pretty normal but I wont get to know about how my stem cell transplant has worked until next month, when I will have more tests and a bone biopsy. The best news however is that we got the go ahead to go on holiday to France before my next appointment in October. So we are excited to get our motorhome prepared.

We had a really enjoyable day on Friday at the Shuttleworth Steam and Country fair and Colin got to have a ride on an enormous traction engine whilst I relaxed and chatted to an old friend who I was so happy to hear had the all clear following her treatment for cancer. It was such a good day out, we hoped to return on Saturday evening and camp there but I just felt too exhausted from all the excitement.

Now there is lots of organising to do with some exciting things happening next week, so I must get on. Not that I have hardly any energy still to do much, but I get a little more strength back each day.

Enjoy your Sunday

Deborah xxxx

Filed under: general chit chat, Myeloma

Day 55 and the journey continues.

Today I was looking back at some old blog posts from this time last year, when we were enjoying some French sunshine. It did bring back some lovely memories and showed both Colin and I really enjoying and living life to the full. That seems to be something that has been rather lacking over the last six months as I have allowed myeloma to get the better of me. I am not going to beat myself up about it though as when one is physically so poorly it really does take a big toll on your mental wellbeing. Along with the physical ill health comes plenty of anxiety which in turn does no good for the healing process. As those of you who know me well will appreciate, I am probably one of the most optimistic dreamers around, always playing the glad game made so famous in the film Pollyanna. In fact only my lovely daughter Pollyanna is better at playing the game. I have however, had to learn a new skill recently and that is living in the moment, the here and now, instead of drifting off into some sort of fantasy land and dreaming up all sorts of crazy plans. I am not knocking that though as it has worked very well for me in the past so I am not about to give up on visualising altogether. I am just learning to appreciate the moment more. I have become some what nervous about planning too far ahead though for the fear of being let down again, but I think as my health continues to improve this may become less of a problem.

We have been out in the motorhome a few times over the last few days. Colin wanted to visit Houghton Mill in Cambridgeshire on Monday, so we made good use of our National Trust membership cards. I didn’t go in as I wouldn’t have managed any further than the ground floor but I was quite happy relaxing in the motorhome. Yesterday we popped over to Dunelm to buy a little lap table and we stopped off at the BMW garage to try out sitting in one of their new cars. Although our little car has not let us down over the last few years of ownership, it has never been very comfortable. I have just applied for the higher rate of disability allowance which if I am successful, will allow us to rent a car through the mobility scheme, so any tips on the most comfortable cars would be much appreciated.

Tomorrow I am off to the Cancer Hair Care charity to get some tips on tying my scarves and a bit of much appreciated pampering. I am still very hairless with no sign yet of any new growth, so not sure how long that will take to come back. Being bald is very liberating and I don’t mind it too much, especially if I feel strong enough to put on a bit of make up, but I don’t like to frighten other people too much and I do get some funny looks if I go out without a hat or scarf. Maybe I need to find out my old wig again. I also hope to see little Elliot sometime tomorrow. Then if the weather is good on Friday and over the weekend we may take another trip out in the motorhome with our good friends and fellow motorhomer’s.

My strength is coming back but it’s an extremely slow process. I have just realised the time and I am still lying here in bed! I have however managed a bath which does seem to take an enormous amount of energy nowadays.

Well today I am appreciating being at home. I am not in hospital, I have no temperature or infections and even after a full English breakfast I have no feelings of nausea, how good is that!

Onwards and upwards my friends. I feel our arms are metaphorically linked and you are holding me up and guiding me along. Your are my strength.

With much love and gratitude.

Deborah x

Filed under: emotional wellbeing, general chit chat, Myeloma