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

What will this week bring?

It’s not every day that you pack your bags ready for a stay in a Hospice and I must admit I never thought this day would come without me kicking and screaming. Because of Kate’s and perhaps a little bit of Amitriptyline’s divine intervention, I am feeling much better and the pain in my legs has not returned in such veracity, but the bed has been reserved and I now feel somewhat embarrassed about turning it down. The general feeling is that I do still have pain that needs to be managed and that perhaps a short stay wouldn’t do any harm. So off I will be going with my bags packed with the required day and night clothes and my much loved mini iPad ready to report back on the daily events. Perhaps it won’t be quite as I have imagined, after all I can recommend their reflexology treatments, I shall just think of it like a trip to the Spa without some of the facilities.

Yesterday I enjoyed a lovely Sunday roast with mum, dad, Colin and Kate before returning home for a massive 3 hour afternoon nap. I couldn’t quite believe it when I saw the time but still I had no problem with retiring to bed early and except for the odd couple of hallucinations reported by Colin, I had a good nights sleep.

I wonder if the postman will bring me a winning prize this week as so far my competition entries have come to nothing. That doesn’t mean I am giving up, the clue to winning is perseverance and patience.

Well wish me luck, and yes Sharon if you are anywhere near the Letchworth Hospice a bar of that magnificent chocolate will be much appreciated. As would a visit from anyone, I do believe they have opening visiting times but I would avoid turning up at 10pm with a bottle of Prosecco and some nibbles as I am not sure how much the staff will appreciate that but I could be wrong! Perhaps it will be a right old laugh with the patients and staff all up for a party, hey ho what have they got to lose?

Deborah x

A miracle has happened,

Now I knew my sister was good, it does after all run in the genes, but I didn’t think she was that good. Yesterday morning she kindly offered to take me out. Getting out is good, but not wanting to over do things because of the recent pain I had been experiencing, the idea was, just to pop into Dunelm’s for a few bits and pieces. We must have spent over an hour in there but we both came out with some purchases and by that time, I was starting to flag. I did however spot a Laura Ashley shop across the road. Head over body won, and as I hadn’t managed to find the bedding I was after we thought we would just pop in there. Now as some of you may know Kate (like my self but I’m not nearly as good) has studied hypnotherapy among many other things, and I think she may have worked some of her magic on me in the short drive over to the said shop. Whilst browsing the duvet covers, Kate held up a lovely little number which I thought she might have been suggesting would suit me, but instead it was something she rather fancied herself and then that was it. It was like a chapter out of a Jane Green novel. Two sisters grabbing as many clothes as their arms could hold, sneaking past the 3 only items assistant into the large disabled changing room. Here one rather larger and balder than the other sister scrambled in and out of clothes looking enviously on to her younger sister slipping dresses over her head with ease and admiring her perfect figure and shiny hair in the large dressing room mirror. There is no doubt she looked amazing, there were however quite a few pieces that although I say it myself, I didn’t look too bad in, in fact I would say I looked pretty good and Kate kindly agreed. We must have tried on over 30 items of clothing each, before heading to the till were Kate insisted on saying that these were her treat. Well I think we ought to do this more often as I had forgotten about any pain and surprisingly enough, have not experienced the pain, at least at the level it was previously, since! I have increased my Amitriptyline by 10mg but I am convinced it was something Kate did that made all the difference. So thank you so much Kate and if anyone else reading this, would like to find out more about the coaching sessions, hypnotherapy,or company training on communication skills Kate offers just drop me a line and I will put you in touch with her.

Well now with my new found pain free body, well almost, I can enjoy the moment and look positively forward at all the opportunities that lie ahead. I am convinced I have turned a corner, the only problem is what do I tell the hospice who are due to have me in on Monday for pain management?

Have a good Sunday as I surely will.

Love a very delighted Deborah.
Ps Having Cancer is one thing but experiencing the level of pain I did was just taking the Micky!

All sorted and party excitement.

So it’s an appointment with the Hospice on Monday. I shall probably be in there for five days while they experiment on various pain reducing medications. Then it’s starting off the harvesting process with chemo next Saturday.

But enough about that because it’s boring me so I dread to think how you feel, reading about it yet again.

It’s time for more party news! I have just had an email from my lovely nephew in LA who will of course, be making the journey over here for this special event. He has managed to obtain the most amazing of raffle prizes but its all rather top secret at the moment. All I can reveal is that there are quite a few of them that I wouldn’t mind winning myself. Sebastian is a record/music manager and I am extremely proud of his achievements. He has always been rather an extravert and if you ever watched Jim’ll fix it, he was the little kid who went off to the Warner Brother studios in Hollywood and sang with the Blues Brothers. We don’t get to see him that often so I am extra pleased that he has managed his diary, to get over to the UK especially for my party.
All plans for the party are coming together so we just need a lovely summers day and were sorted. The party starts at 7.30 with people arriving and setting out their picnics then I think David Mills, a lovely bloke and a great singer, is on first followed by the CC Smugglers doing there thing at about 10pm as we have started to get pretty merry by then. Later on in the evening David Mills will return for another set of more relaxing tunes. We will light the bonfire later so the late nighters can huddle round it toasting marshmallows. I hope I can stay awake and that I am off all my sleep inducing drugs by then.

On a different note Colin came across this exciting website yesterday so we are dreaming up all kinds of adventures ready for when I am well again.
http://www.helpx.net/index.asp
We fancy stopping off at a variety of the places in France offering food and accommodation in exchange for a little bit of help, or just the chance for our hosts, to improve on their English.

Well the sky looks a little cloudy from my position in the bed in the conservatory this morning.
image

Somehow my pain feels better today, I think it’s the threat of the Hospice
again, that’s done the trick. Fingers crossed maybe, just maybe I have turned the corner.

Have a great weekend

Love Deborah x

A trip into London..

.and we are already on the move. I have got to enjoy my lie in nowadays, I expect the Amitriptyline has something to do about that. So it wasn’t easy to get up and in the bath by 6 and out of the house by 7am. There was a time, not that long ago, when I would have had no problem being into work by this time. I enjoyed the half an hour or so peace and quiet before the other early birds joined me. Those days, although only about six months ago, seem far in the distance now but we have a plan.

Yesterday my lovely pain nurse Louise (I hate calling her that, but palliative care nurse doesn’t sound much better)came to visit. If you need anything to get going, Louise is your girl. She arranged an appointment for me to see my Psychologist, Daria tomorrow and to meet up with one of the hospice doctors to learn a little bit more about Ketamine. I know I wasn’t too keen in 1) going into the hospice and 2) taking Ketamine but I really have had enough of the endless pain ruining my quality of life.

Today I will discuss the above with my consultant and ask for a referral to a neurologist who may be able to help me better understand nerve pain. I will also be speaking to him and my transplant nurse about the time for my harvesting. I must admit, I yet again think the NHS is doing me proud. I have a team of specialists who I feel are working with me on finding the best options for killing the cancer and curing the pain. It is such a shame that the Velcade caused me to have such an extreme side effect otherwise I would be a different person right now. I suppose at least I have increased my knowledge and understanding of pain and experienced first hand how disabling it can be. It is now beginning to obsess me and the greatest excitement in my day, is the thought of when I can have my next round of medication!

I have been invited out by my colleagues at the end of June which is pretty exciting but I will have to see how I am both physically and psychologically. I am sure they don’t want a blithering wreck spoiling things.

I am trying to do things for myself as I hate relying on all those generous people around me, but it isn’t easy. I just need to accept that and that I am not superhuman but I’d settle for just feeling human nowadays.

Deborah x

Just look at the time & Pain Special.

I used to try and get this blog out in time for people like my brother, who caught the early morning train. Then it was in time for my sister who wanted to read it with her breakfast after sorting out the horses. Now it seems it is more likely to be up ready for people to catch up with it in their lunch times.

Last evening and again this morning I received a couple of emails with ideas and useful suggestions for helping me to manage the pain I am experiencing. This is very timely as my pain seems to be getting worse and lasting longer which I didn’t think possible.

The email was from a GP who I don’t personally know but has read my blog, finding it through a twitter contact. I still marvel at the power of the net.

I am very grateful to her and know that some people reading my blog regularly, also suffer from chronic pain, I am sure she would be more than happy for me to share her wisdom and ideas with you.

The first is Magnesium -this important mineral can be helpful with general aches and pains. It can be used in the bath – Epsom salts are Magnesium sulphate. Put a kilogram in a warm (not too hot) bath and soak for 20 minutes. If it helps- you can get a 25kg sackful from amazon or http://www.justasoap.com. If you have specific muscle aches, BetterYou do a magnesium chloride spray which you can use topically on muscles which ache. The other way is to take magnesium orally but this can be laxative. Magnesium malate is the formulation I recommend. Magnesium can help with sleep too. We often have too much calcium relative to magnesium in the body and with your diagnosis this may well be the case.

The next suggestion is just about testing -I expect your doctors have done this but it’s worth just making sure they have checked your calcium, vitamin D and vitamin B12 levels. Low levels of vitamin D are so common in our cloudy climate and can aggravate aches and pains.

To help manage your pain and not let it dominate your life, you may find some tips on http://www.paintoolkit.org/ This is a great resource by Pete Moore. There is a work book you can get which can help too http://www.amazon.co.uk/The-Pain-Management-Plan-People/dp/0956662803 . It comes with a CD to help with relaxation.

Meditation can help lower pain levels. Mindfulness meditation – finding peace in a frantic world” by Penman and Williams -also with a CD includes some helpful calming exercises. By lowering your cortisol and stress hormones , you may find your sleep and pain improve.

There is also a good scaling tool that can be used to measure your pain so here is the link for that.
http://www.britishpainsociety.org/pain_scales_eng.pdf

And last of all some apps to help you sleep and relax can be found at http://www.withandrewjohnson.com/

Last night my lovely sister in law kindly popped around with her husband and a lovely homemade stew and dumplings followed by a little bit naughty but delicious dessert. Unfortunately my pain cut the evening short, it just seems to be spoiling everything nowadays!
Not to worry, my pain nurse is popping in today and I have an appointment with my consultant on Thursday so between us all we should manage to sort this mess out.

I may even get to see my grandson and daughter later who I haven’t seen for a while and I am sure will help me forget the pain alongside my best friend Oramorph.

I hope you have a pain free and happy day today.

Deborah x

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

Two margarines on the go….

..it’s a nightmare scenario. I just can’t get this song out of my head. Have a listen but I warn you it’s pretty addictive!

What song have you got in your head this morning? Singing is very good for your mental health. A few years ago I had a conference to launch our new service for children’s mental health. I opened the conference with a lovely young lady singing, Nina Simone’s song Feeling Good, and there wasn’t a dry eye in the house. I met this young lady many years ago when I heard her sing at a conference in London for looked after children. Natalie had experienced being in care and she spoke about the difference singing lessons made to her mental health. Music can anchor good feelings as well as more sad times.

Is there a piece of music you play to cheer you up?

Jackie Hartley kindly sent me some information about how music helps to cure pain. I haven’t had a proper chance to follow this up yet but it sounds very interesting.
Some other friends of mine have set up a small business where they use singing as a way of brining teams together in the cooperate world. I shall have to see if I can get a link to their website.

I often get asked the question of whether I ever get fed up of writing the blog every day and I can honestly say I don’t. As well as a way of starting my day off by perhaps exploring how I feel, I have met lots of new people through this medium. This includes other people with Myeloma from all over the world, friends and colleagues that I haven’t been in touch with for ages and people who have just come across the blog by searching the web or through word of mouth. This morning I received a lovely email from a neighbour of my in-laws saying she had been following my blog. So it’s a great way to meet new friends. Some of these I will be meeting for the first time at my party which is very exciting. Do let me know, if you haven’t already, if you want to come along.

Talking about the party I think it’s going to be a great night. I just hope the weather holds out and we have a lovely sunny evening. Can I put out for an appeal for old blankets please. I would like to put a few blankets out on the straw bales in case people get a bit chilly towards the evening. If you have any hanging around please drop me an email at deborah.bone@mac.com

Well today I am off to see the doctor at the hospice to discuss acupuncture and other possible forms of pain relief, perhaps I should sing the margarine song to him?

I am happy to report a continuos improvement in both my physical and mental health over the weekend.

The weather looks good from my bedroom window.

Have a great day blog buddies

Deborah x

Broken Record

That’s what I am beginning to sound like!

When you experience pain it becomes all encompassing. I find I can’t concentrate on anything else as it is so overwhelming. I cried at the Hospice before my reflexology, I cried during it, I cried when my manager visited me and I cried for much of the evening. I am not depressed, just overwhelmed by pain. The worse pain appears to come in the evening and yesterday it seemed to reach it’s peak. Please God, do let it be the peak because it surely can’t get much worse. Last night as I attempted to watch Britain’s Got Talent, Colin rubbed my feet and legs over and over again with cocoa butter and I could see the pain in his eyes as he felt so helpless watching me trying so hard to control the tears flowing and the groans of extreme pain. Dosed up on as much medication I thought I could have without overdosing, Colin eventually called the out of hours Hospice number. He rolled off the list of medication to the nurse, who explained that nerve pain was the hardest pain of all to control. She recommended that we should keep taking the extra Oramorph every hour and to call the doctor for a home visit if things didn’t improve, and also to contact the pain nurse in the morning. I went to bed dosed up and luckily got to sleep pretty quickly and had a relatively undisturbed night.

This morning I feel much better just the usual numbness and pins and needles in my hands and lesser pains in my shoulders, legs and feet. Should I still call the pain nurse? Maybe this is it, I am starting to improve and tonight will be ok, the trouble is I thought the same yesterday morning. I am going to list below the pain medication, (I shall leave the rest out) I am taking, just in case someone with more knowledge of this sort of thing may be able to suggest another drug or an increase here or there. Not that I don’t trust or believe in my excellent pain nurse but you never know someone reading this may have experienced similar pain and had found something that helped them. So here we go…

Gabapentin 900mg 3x/day
Paracetamol 1000mg 4x/day
Amitriptyline 25mg at night
Fentanyl patch 75mg changed every 3 days
Oramorph as required up to 10ml every hour.

Right at the moment I can concentrate on other things in my life, I always was a morning person.

This morning I am looking forward to going to tea with Ed and Betty in the village. Betty makes the best marmalade in the world but never makes nearly enough of it as everyone in the village is after a jar. Later on this afternoon our good friends may pop in. My advice to anyone except for those closest, is not to pop in after about 6pm as the sight of me writhing around groaning, isn’t a pleasant one!

I can’t quite believe its Friday already. I am surprised the hospital hasn’t called to check up on my progress and to see if I am ready for harvesting, perhaps they can guess the answer and will call sometime next week?

I am disappointed that I can’t seem to enjoy my time off sick, maybe you’re not meant to? As a distraction yesterday, before the pain was at its worse, Colin drove me down to the services and I stocked up on competition filled magazines. These provide me with something not too taxing to do in between pain and sleep.

Colin is doing really well with preparing the upstairs room. He has managed to scrape off all the artex from the ceiling and the paper from the walls so I think the next job is putting unibond on the walls. He is then going to put up a dividing wall between the majority of the room and what is now a very small and rather insufficient ensuite. When we have enough money we will add a bathroom with a lovely jacuzzi bath, that is easier for me to get in and out of. The one downstairs is a very old and deep enamel bath which I struggle with at the moment.

I do hope that this neuropathy business is reversible and I will soon return to something that almost resembles my old self, If I can remember what that is!

Enough of my moans and groans. I know that when you are well and pain free it is hard to appreciate it but do try to and enjoy your day.

With much love Deborah x

Scores on the board at this very moment are:

Physical health = 5
Mental health = 5

What do you look forward to?

For me it’s a pain free day. I really don’t like to complain but this blog was designed to be a place I could express my feelings and perhaps help others, especially those myeloma sufferers who are experiencing neuropathic pain.
Peripheral neuropathy may damage both motor and sensory peripheral nerves.
‘Peripheral’ means ‘situated away from the centre’ and refers to the outer areas of the body. ‘Neuropathy’ means ‘disease or malfunction of the nerves’.
Peripheral neuropathy can be acute or chronic. Louise, my pain nurse and I are trying everything we can to find the best combination of drugs to manage the pain. Not only is the pain very debilitating but the disease can also cause muscle weakness which is another of the symptoms that I am unfortunately experiencing. I have tried taking up to 70mg of morphine sulphate tablets topped up with Oramorph as required. This wasn’t succeeding in killing the pain so I am currently trying an increased dose of 75mg of Fentanyl that is given in two patches (50mg and 25mg) lasting three days. I can still take Oramorph as required. I shall just have to see how that goes, fingers crossed it does the job.

I also look forward to my foot massage at the Hospice today and the opportunity to ask them about acupuncture. I have read that for some people with this kind of pain, acupuncture works particularly well.

Another thing I am looking forward to is my party on July 13th. I can’t quite believe that’s only six weeks to go, hopefully I can get together with the party committee soon to check everything is on track. More payments are dribbling in which gives us a good indication of numbers. If you haven’t yet purchased your ticket I shall be sending you another reminder email this week. I shall also be sending out tickets and a map to all those who have kindly sent in their £10. Six weeks isn’t long and Colin is working hard trying to prepare our guest bedroom for visitors. Unfortunately we don’t have enough room to put lots of people up but there are a couple of travel lodges within about a five minute drive away, and people are welcome to camp as long as they bring along their own tent, caravan or motorhome. We shall be giving up our room for guests in preference for camping out in the field.

I am also very excited for the postman to come. This is a daily experience that happens when you start entering competitions.

I wonder what you are looking forward to, besides the party of course?

Deborah x