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).

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

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

A day of rest.

I think that’s what the doctor would order, not that I’ve done that much really but my body is seemingly telling me enough is enough.

On Thursday, I had a lovely pampering session at the Cancer Hair Care place, (for those of you who haven’t already read about this on Facebook), I even got my wig cut. This is such a worthwhile service and I have been so lucky to have had their support over the last year or so. It really does make a difference to be able to go somewhere every one is in the same boat and understands what it’s like to lose your hair and go through some pretty horrible experiences. All of the volunteers are so helpful and the service is free to women needing support to deal with these issues. They are however desperate for funds if they are to continue and are currently looking for some great raffle prizes. Please take a look at their website and let me know if you do have a prize I could let them have.

www.cancerhaircare.co.uk

Cancer can be an expensive business especially if like me you have had to give up a full time job and try and manage on a small pension. I am quite lucky though both Colin and I have always been grateful for the simple things in life and don’t really need much to make us feel happy. Just a cure for Myeloma would do me, now surely that isn’t too much to ask?

On Friday we had a great day out with our friends all be it just meeting up in a car park in our motorhomes. You see you don’t need loads of cash for the company of good friends and a shared picnic. It was in the lovely grounds of Wrest Park in Bedfordshire only about 30 mins drive away. We feasted on great food, chatted, laughed and enjoyed a glass of wine or two. We dreamed of houses in France and reminisced on our holidays abroad together. A good day was had by all.

On Saturday we were back in our motorhome, this time on our drive, as the plumbers came and fixed our hot water. Helga our very old Hymer has everything on board so Colin cooked us up a delicious full English breakfast. In the afternoon mum and I went to the ‘Big Event’ on the village field and I managed to walk around most of the stalls. Luckily there were strategically placed chairs for me to take regular rests otherwise I would never have made it, but it’s another step forward. It was a real village affair with displays of the best grown carrots and homemade scones, a tombola, fancy dress, country dancing, wellington boot throwing contests and all the other usual country village fair bits and pieces. I was out in my newly trimmed wig and got a few strange looks as people didn’t quite recognise me especially as I have lost quite a bit of weight since folk last saw me and I was hobbling around with my stick. I must admit I thoroughly enjoyed being out in the fresh air and soaking up the atmosphere.

Sunday was another good day. Colin and I enjoyed a lovely lunch at my brother’s house. The food was again delicious and the company was great as we sat out together in the sunshine after a hearty Sunday roast.

So you see I haven’t done much but it’s been enough to make me feel pretty exhausted. I have learnt how to listen to my body when it’s telling me to rest. I do wish I could do more though, especially to help Colin around the house with the daily chores, but it’s as much as I can do to get myself dressed at the moment. Never mind each day sees an improvement and on Thursday we are back down to the hospital in London to find out the next plan of action.

Take care dear friends and thank you once again for your continuous support and words of encouragement.

Deborah x

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

Day 49 and things are improving.

Each day I become a little stronger. This has been really helped by not having the constant feelings of nausea and vomiting. I am now managing to eat a proper meal at lunchtime which is helping me regain some energy. I even managed a trip to Ikea on Tuesday which shows just how far I have come. I did find it rather frustrating though, being pushed around in a wheelchair and not being able to flit from one thing to another. Poor mum and Colin were very patient with me as I was rather grumpy to say the least!

Yesterday we had Elliot for a few hours, he was so well behaved and a joy to have around.

Not only that it was great to see my sister again yesterday, she has come home for a few days visit and to give Colin some relief from his usual caring duties. I expect he will get outside and start polishing the motorhome again. Hopefully it won’t be too long before we can go away for a couple of days.

Today is a pretty sad day as I woke up to the news of a virtual friend and fellow Myeloma buddies death. Also the sudden change in another fellow myeloma buddy whose health has taken a turn for the very worse, and he is only 43 years old. It does make me realise how I need to take each moment of life and embrace it as much as I can.

So today I shall enjoy Kate’s company and try to give my legs a bit of exercise without over doing it. I am trying to sort out my spare room so that I can start taking up a few hobbies again although I have a feeling Pollyanna may be taking over the space and coming to stay a bit more often when she starts her new job in Cambridge.

I am hoping to make some bits of jewellery that a I can sell to raise money for Myeloma research. Another new myeloma friend has started making some inspirational wristbands but shipping them over to the UK is quite expensive. The trouble is all the best jewellery making supplies seem to be abroad which is pretty annoying, but I shall keep looking.
Here is the link for his wristbands that have given me the inspiration.

https://www.etsy.com/listing/200277679/insperational-wristband?ref=listing-shop-header-1

At day 49 I have come a long way and am so much better than even a week ago, so everything is going in the right direction, but I don’t take anything for granted these days.

Thank you again for remaining by my side, you are my strength.

Have a great day wherever in the world you may be.

Deborah xxxxx

 

Day 43 – A bit nervous about speaking out too soon but…..

…I think the feeling of nausea may have almost gone or at least been drastically reduced. On Wednesday I had a home visit from Louise, my lovely Palliative Care Nurse. She listened and then looked carefully at all my medication. Embarrassingly, I threw up whilst she was there. Louise was determined that we would get on top of the sickness. After a discussion with my specialist myeloma nurse and the hospice doctor, Louise rang back in the afternoon with a new medication regime. I was to try taking Levomepromizine 6mg x1, and 1mg of Lorazepam under the tongue at night. Well it seemed to do the trick and knocked me out for the whole night. So yesterday (Thursday) was a much better day. I was able to eat and drink small amounts and felt much brighter in mood. It made such a difference. I still feel mildly nauseous but nothing like I did and I can take up to 4mg of Lorazepam during the day so I always have that as a back up.

I made it downstairs yesterday and with Colin’s help I managed a short stroll around the garden. Today I may go for a drive out in the motorhome. I must however be careful not to over do it. My body is still very week and I can’t do very much before I am completely exhausted. Thank goodness for the wheelchair borrowed from the Red Cross.

Yesterday I had a lovely visit from my old friend and colleague Jane. It is all very exciting as she is moving to Guernsey next week to start a new job. I shall really miss her but both Colin and I are excited to follow her journey and we hope to visit her out there sometime. Jane is one of the most generous and genuinely thoughtful people I know. It wasn’t until she left that we found the bags of Waitrose treats that she had left behind for us. All kindly hand picked tasty morsels aimed at trying to encourage my appetite. But it’s not just her generous gifts it’s her thoughtful words and kind gestures that make her so special. Both Colin and I will really miss her but are so excited about the adventures she has ahead.

I must also acknowledge all the hard work and kindness my mum shows. Nothing is too much trouble for her and she does all our shopping and ironing at the moment. Anything she can think of to make our lives easier she does. Last week she bought all sorts of natural remedies to try to reduce my nausea, from specially scented candles, Joss sticks, mints and herbal teas.

I am very lucky to have such a caring family and good friends.

Perhaps I have turned a corner? Oh please do let that be so. I feel that HOPE and my positive outlook is returning.

Thank you all for your continuous support and comments. They really do make the difference.

Now I have some competition entries to post. Fingers crossed I could be winning all matter of crazy prizes.

Have a great Bank Holiday weekend my Guardian Angels

Deborah xxxxxx

Day 40 – Aug 19th 2014

I would like to report on my improvement but I am afraid I can’t do that just yet. The worse thing is the dreadful feelings of nausea which is much worse in the afternoon and I have actually been physically sick on the last three evenings. I seem to have tried all I can think of from the 4 different medications prescribed to ginger in various forma, mint tea, mint sweets, Rennies, Gaviscon and pressure point wrist bands. If any one has any other ideas I would be most grateful.

It is very hard to eat or drink much when you feel so sick. Yesterday I managed a small bowl of ready brek but that was it for the day. Today I have had some Rice Krispies with a few strawberries and some mint tea. Colin is going to cook some lamb chops for lunch so I will try my hardest to eat some otherwise I will fade away. I have become quite anxious about eating, never mind the fact I don’t fancy anything, because of how bad I feel in the evening, but it can’t help having all my medication sitting in an empty stomach.

Other than feeling sick I have become even more weak but today I will make some effort to get out of bed and spend some time downstairs.

Mentally despite all of this I am keeping depression at bay. Of course I am not happy with the situation but I am looking forward to a healthier future. At the moment however, I would settle for a day without nausea.

The palliative care nurse is coming out to see me on Wednesday morning and hopefully she may have some more ideas.

Sorry not to have been able to bring you more encouraging news but I suppose it’s still early days yet.

Deborah x

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

Writing this blog…

…Is not always easy. When I am too tired I just don’t have the energy to do so.  It has however been very helpful at times and I am proud to say that since starting it I have had over 65,000 views. I have always promised to be honest and open and use it as a way to share my experiences of my health journey and seeing the NHS from the other side, and at times share the knowledge and experience that I have gained in the field of mental health over the last 30 years or so.

Through the blog I have made new friends and caught up with old ones. I have been truly overwhelmed by your support and generosity, this has helped me through many a difficult time and I have never felt alone with you by my side. My audience is varied from family and friends to fellow Myeloma buddies from all over the world. Sometimes knowing that my parents, children, brother, sister, husband and close friends read this has made choosing the words I write quite difficult. Although I have always promised to be honest I am very sensitive to their feeling. I never want to worry or offend, to make people feel even more miserable by sharing my lowest points but I think I usually manage to strike some sort of balance, I do hope so anyway. It is also important for me to talk about mental health, if we are ever going to reduce the stigma that is still around.

So here goes. This last week, I have felt particularly low both physically and mentally. At times I wondered how much more suffering I could take, especially after the five attempts of digging around to find a vein that wouldn’t collapse on Tuesday. I was particularly sad at having to go back into hospital again and it was so hard to watch my husband having to witness my pain. When you are used to being so independent it is difficult to then have to rely on others for even your most basic needs. Physical ill health has a direct link with your mental and emotional well being, so my usual positive self had disappeared and I felt more overwhelmed by sadness than ever before. It pains me to admit it but I started to think that the world may be a better place without me and an end to all this suffering would be a welcome release for everyone. I am sorry to share these thoughts but apparently they are quite normal for someone who has experienced the trauma that my body has been put through. I am pleased to say today I am feeling much more positive and emotionally healthier.

Myeloma is a particularly nasty cancer and everyone’s journey is very different. There is no knowing how long any remission will last or what will happen next. Some people are luckier than others and I have read stories of people being in remission for many years. At my hospital visit yesterday my specialist nurse briefly discussed the likelihood of me having to continue on some sort of chemo maintenance drugs due to the aggressive nature of my myeloma. If it’s what’s going to keep me alive so be it. The good news from yesterday’s visit is that my white blood count and my neutrophils are just in the normal range now so my body should be able to fight it’s own infections once again. My red blood count is still a bit on the low side which probably accounts for some of my tiredness.

I am listening to my body more and may just spend today in bed. I really do need to rest so that the healing can take place. Eating and drinking is still quite a challenge unfortunately due to the constant feelings of nausea. I haven’t however broken my 30+ years record of actually throwing up although I got pretty close to it in hospital.

I really want to thank you all again for your continuos support. You are my strength when I am at my weakest.

Just look at the lovely bracelet Jem bought me on Tuesday, it was so sweet and thoughtful of her.

With all this love around I know that each day I will become physically and emotionally stronger.

I am forever in your debt.

Thank you

Deborah x

What seemed like the last straw..

After having a lovely morning watching my grandson from my prone position on the sofa I started to go down hill and struggled upstairs to bed. I took my temperature and it was 38.4. Anything over 38 means take yourself to your nearest A&E. With low blood counts any infection could potentially be fatel. But I was devastated and fraught with grief at the thought of going back into hospital and all that entails. I rang  the free Myeloma support line and spoke through my tears about my sheer frustration , fear and disappointment. I knew what she would say. That I must call my specialist nurse who I knew would insist I went immediately to my local A&E. After 7 hours of waiting, admittingly on a bed in a side room I was eventually found a side room in the new Acute Medical Unit. There are no Heamotology beds at the Lister. Last time I was here I was put in an elderly care ward so I insisted I would immediately discharge myself if that happened again. Luckily I was given a nice reverse barrier side room. Because the air is kept clean the is an air conditioning  unit just above my bed and I was freezing, despite numerous blankets. Still my temperature has come down and I think I have managed to persuade the consultant to let me home today on the promise I attend my appointment at UCLH tomorrow.

Nothing runs smoothly in the Myeloma theme park. I think I am on a rollar coaster at the moment, the ride is making me feel very sick and I really want it to stop and let me off!

Patience really is a virtue which I think I have missing!!

Deborah x