We spent the first night here…

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…. in an Aire opposite this quay in Calais. I must admit I wasn’t feeling too great and couldn’t wait to get into bed. It’s a shame because I’m not the girl I used to be. A couple of years ago we would have wandered into town to find out where the loud live band were playing and enjoyed a beer or two. I just have to get used to not doing so much so I think an afternoon siesta will be an enjoyable necessity. Shortly we will head down to Le Tréport to an Aire right opposite a lovely beach. From here we can cycle along an adjacent cycle path into town. Before then though I hope Colin will wander into town and pick up a couple of fresh croissant.

Deborah x

2 sleeps to go…

….and everything seems to be slipping into place. Last night the marquee was put up (thanks to Gig and Colin), it’s not too big but it will hold a few tables for those who may wish to shelter a little but still want to see the band. We were going to have a few more marquee’s but as the weather forecast is looking so good we have decided that they probably aren’t needed. More raffle prizes and jugs arrived, thank you ladies. And yesterday we had our first delivery of bunting and just look who popped along to guide friends and family to the party venue.

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As Colin and I have taken to sleeping in our motorhome we constantly feel in that holiday mood so everything is going along at a very relaxed pace.

Now what happened to my list?

Short and sweet

Off for a dip in our pool (my wish)

Deborah x

Phew, I think I am back on track.

Yesterday I felt much better and it was lovely to see my uncle Jeremy (who gives the best hugs in the world!) and his beautiful wife Katina. They have flown over from Hong Kong, for a short visit, and together we enjoyed some quality time and good laughs over lunch in the local pub. It is a shame we don’t get to spend more time together as both Colin and I really enjoy their company but hopefully we might catch up with them in France later this year.

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It is now only 3 sleeps to go. Yesterday the porta loo’s were delivered and it really is starting to get very exciting. Thanks to all the help from so many lovely people I think everything is going to plan and with good weather seemingly on our side it’s going to be a great night.

I am so looking forward to meeting friends old and new and to welcoming our family who are travelling all the way down from up north to share in the celebrations. And of course to having a big hug from my amazing globe trotting nephew who has made time in his busy schedule to be with us on our big night.

This cancer lark is a funny thing and sometimes I can’t make head or tail of it. Somedays I am just absolutely overcome with fatigue and others I feel perfectly ok. Perhaps it’s because I have my pain meds back under control? It.s a bit of a shame as I was hoping to be rid of most of my medications for the party but I would rather be pain free and I am sure a little drink or two isn’t going to kill me. If I get into trouble there will be plenty of clinicians at hand as long as they are not all too inebriated!

Colin and I have taken to sleeping in our motorhome as it’s so cool in there as we can open all the windows and put up the fly screens so we are not bothered by any night time flying creatures. The only problem is that we feel we are constantly on holiday and are much slower at getting on with things.

Just look at the time now.

I must get on.

Such fun!

Deborah x

What a great team…

…we make. First we smash those cancerous cells to smithereens and then we go and grow enough baby cells for at least two transplants. You really can’t ask for more than that. For those of you wondering what happens next, I have an appointment for an echocardiogram and one with the consultant on July 11th. I expect then to bo booked in for another MRI scan and bone biopsy. These are tests that are routinely carried out but are also more important as I am taking part in a clinical trial. They will measure how many cancerous cells are left in my bone marrow and the damage that has been done to my bones. I already have several bone lesions but the consultants for one reason or another have been reluctant to let on where exactly they are. I have been very lucky with my cancer as it was spotted through a routine blood test and prior to me having any symptoms. For many other people the diagnosis is often spotted after a broken bone often in the neck or back.

My stem cells are being put on ice. That is because I am on a trial that will monitor how long it will be before I require a transplant. They reckon from between 18 months and two years, but I am counting on a good ten years before the little blighters start reproducing again. It is for this reason that I will be closely monitored and the reason why, unfortunately that your never without the constant reminder of your disease. It’s not like a cancer where a bit can be chopped off and then you are monitored for a few years and then if all is Ok you are off the hook. Myeloma sticks with you lying dormant like a sleeping dragon waiting to be woken again to breathe its fire. You need to learn to live with myeloma, make it your friend really, and set up some sort of pact. If I don’t poke you, you will leave me alone. Hmm maybe that’s more like an ex partner than a friend!

Oh well apart from the odd appointment to remind me, I want to pretty much forget about the whole thing and start living again. My first task is to ween myself off the enormous amount of drugs I’m taking so that I can enjoy a drink at the party.

Thinking about the party I have a few personal errands to run. Luckily our lovely old motorhome sailed through its MOT so we shall bring her home today and may take her out for a spin. I have been told to take it easy for a couple of days and my cancer co-ordinator said I should allow 3 months post cancer treatments to be back to my normal self. Well they don’t know me very well. I have just about had as much as I can stand of all of this sitting around. However I will take it easy for a day or two, I don’t want to rupture my groin!

Thank you for all your messages of support. When I talk about this having being a team effort, I mean this in all sincerity. Those of you who have provided support in the way of just reading the blog and letting me know you were on the same team helped immensely. The brain and the body are intricately connected and positivity of thought is very necessary. That is not to take away from the amazing skills of the medical teams playing their part in my recovery and present remission status.

Bless you all

Deborah xxx

Whoops

I was feeling so relaxed and laid back I completely forgot about the blog. OK, I know I don’t have to write something everyday but I know that there are quite a few of you that regularly read it, and I wouldn’t be surprised if I had a call or two soon, checking that I was OK.

I am more than OK, I am considerably well. Both Colin and I have been swept away by excitement this morning!
A friend of mine is currently touring France in her motorhome and it really got us going, it doesn’t take much! We hope to be off to France in September, with our best mates, but even more excitingly than that we are looking into chasing the sun for a few months starting just after Christmas. We have always dreamed of having Christmas away but alas there is usually a child or two fretting that they can’t possibly be left alone at that time of year, it’s hard to imagine they are 26 and 24!

Today will be a day of leisure, meaning we will do what we like when we like. We do however feel rather bereft without Helga, our big friendly motorhome, who has gone in for her MOT.

Only one more injection to go before my harvesting on Monday. I must admit Kate has made an excellent nurse and all so far, have been pain free.

Well I can’t hang around here, I have more researching to do if we are to find that perfect spot in the sunshine.

Enjoy your day of rest.

Deborah x

Here we go again….

…but this time I am well prepared. I have woken up to a pulsating pain in my sternum area and lower back. This was a pain I was expecting and I am quite pleased it has arrived. The pain is caused by the pressure of stem cells building up in my bone marrow desperate to be set free on Monday. I have become quite an expert at pain management so I will feel only a little discomfort.

Yesterday I was reflecting back on the reasons I set out for writing this blog. I wanted to share with my nearest and dearest how I was feeling at different points of my journey with myeloma. I also wanted to to use it as a cathartic exercise for getting things “off my chest” before moving on with my day. I also wanted to observe the NHS from the other side of the fence and I must admit I have been massively impressed by the care I have received. If my blog has been able to educate or support anybody along the way then that is an extra bonus.

Today the sun is shining here and I want to spend the day doing more sorting out of ‘stuff’. Colin and I seem to have too much stuff, we are hoarders striving for minimalism. We both want to be free of all the chattels that hold us firmly to the ground but somehow this has proved to be quite a challenge. Colin will usually take the first step, “enough is enough, some of this ‘stuff’ is going to have to go.” I totally agree with him, but then find myself following him around removing things from the dustbin or charity pile and placing them in the growing pile for the loft. It’s called the ‘just in case’ syndrome. Just in case I fancy reframing that old print, just in case I need that unused fondue set,(one of three!) one day!

Today Helga, our old motorhome will go for its MOT. She will be away all weekend and both Colin and I will miss her presence on the drive. Both of us adore that vehicle, she is a symbol of our freedom and features highly in our dreams to leave the clutter behind and explore Europe. We are so looking forward to our holiday to France and then planning for the winter months away chasing the sunshine.

Wishing you a great weekend.

Deborah x

Simply the best…

…..day I have had for a long time. Shopping is my kind of pain relief, thank you Kate for dreaming up this new form of therapy. Yesterday after swiftly getting my bloods done and dropping the dog off at Weston we swopped our car for the motorhome and headed for the shopping centre at London Colney

We divided the day into 2 halves, breaking off for lunch and a good sleep in the middle.
The first half was a little disappointing, as the dresses that looked so promising
on the shop dummies looked very different on me. But I did spot a lovely scarf in the
window.

The next stop after a lovely lunch,long sleep and cuppa proved to be a great success. Luckily for me Colin enjoys shopping almost as much as I do. So we must have spent 3 hours in Marks and Spencer’s, which has a great range of summer clothing in at the moment. Suddenly Colin noticed the time, and remembered that the shopping centre car park has new restrictions with a hefty £70 fine if you stay over 5 hours. They sneakily photograph you as you enter and leave the massive car park. We were about ten minutes over so are very likely to receive a fine which rather spoils a fantastic day out. I shall appeal of course, well honestly five hours isn’t very long especially for someone like me who requires a sleep in the middle of proceedings!

I am so delighted with the clothes I came home with and had to try them on all over again. I would show them off on here but I don’t want to spoil the surprise, of what I am probably going to wear for the party. Let’s just say it’s not usually something you would wear during the day, and leave it at that!

Well I’m off to chemo today in good spirits. I really do think I have turned the corner as far as the neuropathic pain is concerned, now lets just hope that this new chemo drug doesn’t leave me with any nasty side effects.

Looking forward to seeing my best friends over the weekend.

Love from a very happy, back to my old positive self, Deborah. Xxxx

A trip out…

…to Brooklands museum in Surrey was enjoyed by all. I had the chance to sit in the Wellington and mum was able to share her father’s diary with some very interested historians. We all (Mum, Colin and I) came back on board the motorhome for lunch and then an afternoon nap before Mummy crept out to meet up with Kate and Martin again.

I really would like to get to the bottom of my pain, yesterday it wasn’t too bad but as soon as I sat down on the sofa it returned with a vengeance. Well I am bored of talking about it now, never mind having it.

Late last night I was very tearful and Colin found it hard to console me although he did a good job by changing my state and taking me back downstairs. I had received a lovely email from the chief exec which reminded me of who I used to be. I don’t like what I see in the mirror. It is the party and then a holiday to France that is keeping me going, but I am afraid only just. I am sharing this with you not that I at all want you to feel sorry for me (I do that enough for myself) but because it helps me to see it in writing and try and sort it out and to share with other Myeloma sufferers, that its Ok to feel down sometimes. Just because I don’t recognise the person in the photographs from only a few months ago doesn’t mean it’s not me. I just need to reinvent myself somehow. If I hadn’t suddenly realised that I have to go up to London for an echograph today, I would get on with my book then look forward to becoming Deborah, a recognised author, of children’s mental health books.

I wish the sun would come out again, perhaps it’s saving itself for the party.

Best Wishes

Deborah x

Pleasure vs Pain

Yesterday following another tearful conversation, I thought I recognised the signs of depression creeping in. OK it is quite reasonable for me to be unhappy about the situation I am in. Only six months ago I had a job that I loved and that provided me with an identity, status and security. I am now not the Clinical Lead and Service Manager of Step 2, a service I designed and developed from scratch. So who am I and what am I to become? All of this is enough to make any one feel low in mood. But yesterday I thought enough is enough. Where was my usual Pollyannerish attitude to life? This was what really defined me. That creatively I could work with others and explore opportunities at the bleakest of times. Acknowledging the pain and grief but finding the light and something that together we could work on. Reframing the grey into a paler shade of white and the darkness into a moment in time, before the light was switched back on.
So I decided to take advantage of the sunshine and the fact that I had the time to lie on my sun lounger looking out onto the most magnificent of views. I started to develop another chapter of my book and visualise the money it was going to make and the fact that by writing this and delivering a few press conferences, provided us with the income we needed. Enough to spend the winter somewhere warm as we set off on our travels in the motorhome with no restrictions on when to come home. I thought about the annual leave that in the past I so carefully preserved, and then didn’t end up using as the end of the year was always too busy a time to take it. I decided I would exercise, just a little to start with every day.

So yesterday morning started pretty well once the tearful telephone conversation was over. Mum kindly bought me a lovely loose outfit to wear in the hot weather and we sat enjoying a leisurely lunch together. I then squirrelled myself away again in the motorhome for my ritual siesta. As the evening approached I enjoyed hearing about Sue and Angela’s adventures in France before meeting up with the party committee at Kate’s.

All seems to be going well with the party arrangements and much of the discussion albeit after a few glasses of wine (not drunk by me sadly:( ) was about how many flushes the porta loos would allow, and whether it was appropriate or NOT, to set up a mens urinal facility behind some sort of windbreak! More seriously, everyone is working so hard to make this a fantastic evening and I am sure it will be. We just need the weather to be on our side.

Unfortunately, hence the title pleasure versus pain I was in agony by the time I got into bed with the pains in my legs as bad as they had ever been. Honestly, I wish someone would tell me how long this peak was going to last as every time I think I have turned a corner it comes back to bite me.

Today is going to be a good day as will the whole weekend so please do enjoy yours.

Deborah

Ps I would like to give special thanks to Heather who is always so supportive and there no matter what and to Sharon who provided the new marvelous chocolate bar that was enjoyed by us all. And to Sue and Angela who have so kindly bought us over 30 bottles of wine for the party it is so much appreciated. When you think about all this what the hell have I really got to be depressed about!

A different perspective.

Our view

Our view

Last night we decided to sleep in the motorhome, after all our best friends are sleeping in their’s, albeit their’s is in France and our’s is parked up in the drive way. But just look at the views!

Yesterday I slightly over did things, but I do so much want to be back part of the ‘norm’. I only wandered around the garden wholesaler’s for a couple of hours and I was floored. After lunch I managed to climb up into my bunk, squirrelling away the chocolate’s mum had bought earlier, and feeling like a naughty school girl skiving off school, I soon fell asleep.

Late afternoon I had a visit from a very valued member of the Step2 team. It was lovely of her to drop by and I had a little cry on her shoulder as I thought about the possibility of never returning to work. Work was a big part of my life, it provided many of the LAMBSS (those of you who are frowning with confusion need to read back to nearly the beginning of the blog), I required, filling up much of the boxes of love, autonomy, meaning and purpose, status and security. Those of you who know me well, will appreciate how difficult the sudden loss of these must be. I have to re-define myself, who am I now? I certainly don’t want to be defined by my illness. I need to see this time of change as an amazing opportunity. There is much of the world to explore, time to write and create and more time to spend with my family and friends. The frustrating bit is that while this bloody neuropathic pain is literally biting at my ankles it is difficult to move on. Still I need to give myself time and meanwhile I rejoice in still having you all there by my side. It’s surprising how even the seemingly small things can make such a difference. A card from a colleague reminding me that she is still thinking of me, an email from a practical stranger wishing me well, support from the groups of people on the net who are experiencing a similar journey with cancer, the very kind lady raising money for more cancer research by running The Race for Life. People in my local community and others as far away as Canada, Australia and America making comments on my blog, donating raffle prizes or just simply reminding me that they are there. I know I often say this but I really don’t think I would be managing this journey nearly as well without you. So I don’t feel ashamed in Thanking you again.

Today I must quickly get up and on with things. Whilst Colin has been busy building walls and re-designing upstairs, to create a guest come creative space room, the housework has been somewhat neglected. I must therefore pull myself together and use this mornings energy reserves to run around with the hoover and duster. I wouldn’t normally bother so much but we have some lovely new friends visiting this afternoon to help us, or rather mummy, with the garden. These new found friends I am sure wouldn’t judge us by the state of our home but one does like to make a first visit impression. This is especially important as they live in the most amazing country home with 20 acres of manicured land and a house to die for. Well not literally of course but you get my drift, once or twice a year they open their lovely gardens to the public to raise money for various charities. It is extremely nice of them to want to help us and I hope they will be coming along to the party.

Talking of the party we have a committee meeting arranged for this Friday (I think) just to check how things are going and if there is anything we have forgotten. We have about 130 guests coming along so far, and we really do want them all to enjoy themselves whilst raising as much money as we can for cancer research, so the planning is very important. I am really looking forward to it but if I keep eating cake and chocolate at the rate I am doing I shall be wearing one of the marquee’s never mind putting it up!

Well this is no good I had better get on, although I could chat away on here for hours.

Have a good day wherever you are in the world.

Deborah x