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

Just a short one…

…to keep you posted.

Yesterday I continued to feel much better, maybe because I took the Oramorph hourly? This resulted in me being able to get on with making my candle holders, out of jam jars.

Pollyanna and Rob popped in for a cooked breakfast and mum stopped by to do a couple more hours of gardening. Thank you mum.

Today will be pretty quiet as I sit around perhaps entering more competitions and Colin gets on with the spare bedroom.

So if anyone of you do want to pop in please just bring along some cake as we are once again cakeless and our only offerings will be a digestive. The problem is with the cakes such as Lorna so kindly made and dropped off on Thursday, is that they only last one day as they really are so delicious!

Enjoy the Sunshine today and please could you send lots of positive vibes to Judy a lovely lady who is running the Race for Life today, with my name on her back, in order to raise money for cancer research.

Thank you so much Judy.

Deborah xxx

Perhaps, just perhaps….

…..the other evening was the peak my consultant keeps talking about. I certainly felt as if I had reached the top of the mountain. Yesterday evening (when things are usually at their worst) was much better. Now is that because of the hourly doses, I had been taking of Oramorph during the day, regardless of whether or not I really needed it? Or because of the threat of going into the Hospice? When Colin called Louise (my pain nurse) yesterday morning, she reported that she had done all she could in the community. She suggested that she referred me to the Hospice for a 24 hour stay in order for them to administer medication that she was not allowed to give unless first given and monitored in the hospital. Hmm now it has taken a lot of courage for me to go along for the odd cup of tea and foot massage to the Hospice but going in overnight is a whole different matter. I am not keen to be lying in a bed next to dying people. I also don’t want to be at the point where they try out possibly fatal drugs and then come out the only way I imagine in a box! No the Hospice, as nice as it for some people at a time for a restful end, is not where I want to end my days!!!! (Sorry uncle Jack). Suddenly I find myself feeling much brighter perhaps the patches are starting to work?

Yesterday was also pretty busy. The morning started (after the near fatal call with louise), with morning coffee with Ed and Betty and a take home jar of the famous marmalade. We love seeing Ed and Betty and conversation always flows so easily with them that it seems as if we have known them for years.

We arrived home to see our regular gardener hard at work. Mum really is doing an amazing job but the weeds seem to grow at a much faster rate than the flowers she’s kindly planted. After lunch I went for my obligatory afternoon nap in the motorhome, to be woken some time later by our best friends holding out croissants and offering to bring in a cup of tea. Sitting together in the motorhome, all be it in the drive, is like being on a little holiday. We were soon joined by Patrick (the retired vicar, and good friend) who always joins in so well with the conversations going and has a giggle with us all. Not long after his departure Michael (my ex husband) dropped in for a cuppa and very kindly presented us with a gift of a lovely photo of Jem and Elliot.

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Then a little later Keith and Shirley popped in as the last of our visitors for the day.

As the evening approached with anticipation I am delighted to report that the pain did not reach its usual peak levels. Hip Hip Hooray just perhaps we are on the way down. so please can it be a fast descent with a soft landing.

Today will be a hunt for more bottles of Oramorph as I have quaffed more down than expected and am rather low on supplies. This is something dear reader, unlike chocolate peanuts, that you can’t come and provide me copious amounts of.

Enjoy your weekend as I surely will do, in the knowledge that I am not spending Saturday night at the Hospice (Sounds like a line of a song).

“Saturday Night at the Hospice,
who care’s what bed that your’e in,
when your hugging with your pillow,
no guessing what pills they’ll pop in

Oh Saturday Night at the Hospice
isn’t the place for me
I am all of a sudden
on the path of recovery”

Or is it meant to say Saturday Night at the Movies?

I can feel another new career coming on

Love Deborah xxxx

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

A trip down Memory Lane

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Me and Jarvis

Leafing through old photo’s with Uncle Ken and Aunty Judy.

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Me, Rebecca and little sister Kate

We had such a lovely time it was a shame to leave and Colin felt that the trip had really helped him as we talked about the effect of me having cancer was having on him, on the drive home.

We stopped on the way home for the lovely picnic lunch Aunty Judy had prepared. I then had an hour and a half’s sleep before we carried on with our journey home.

Picnic lunch provided by Aunty Judy

Picnic lunch provided by Aunty Judy

We arrived home at about 5pm to a very excited Frodo who has been well behaved for Kate.

Pain wise, how does one tell when one has reached the peak? My pain just seems to be getting worse and I really want it to start reducing now. The Fenytl patches make me feel much less dopy but the pain is worse so I must talk again to Louise and find out what our next step should be. Other than that there are no other plans for me today as yet.

Best wishes

Deborah

PS.
Scores on the board
Mental health = 5
Physical health = 8

Bloody Pain is preventing me in doing much more 😦

Waking up to the pitter patter…

…no not of a new baby or puppy dog I’m afraid (well I would be if it was, especially the first of those) but the rain, not so much pitter pattering but rather more heavy feet dancing on the roof of our tin can. Both Colin and I slept extremely well except for the interruption of an Oromorph top up at about 1.30am.

It is lovely to be here in Sheffield and we were treated to one of Aunty Judy’s famous roast Sunday lunches with proper home made Yorkshire puddings yesterday, even though it was a Monday. Being here is like being wrapped up in a warm cosy duvet. It is very homely and we are so well looked after. After lunch Colin and I retreated into Helga our Hymer for an afternoon nap, (I blame the tablets), before joining Uncle Ken and Aunty Judy for a Yorkshire brew and home made flap jacks. Chatting away, swapping stories and me learning more about my early childhood. The parties with Jarvis and Saskia, homemade dresses carefully sewn by Big Nannan, who was actually quite small, but bigger than my great grandmother who was known as Little Nannan. It was a lovely afternoon full of laughter and topped off by a very kindly thought of, a bowl of chocolate covered peanuts, in front of Coronation Street.

The signal of the open curtains this morning lets us know that the breakfast lounge is open so I must finish off here. I have been promised a lovely warm bath and a variety of breakfast options.

Have a lovely day and take a moment to remember just how important family are.

Love Deborah .

Boy..

…did my legs hurt yesterday. I had to take up Louise’s advice of more regular Oromorph. It rather put the dampers on the day as it was very distracting.

This morning we are off and I am really looking forward to it, but I was really disappointed in not being able to join in with Colin in preparing the van, as much as would have liked.

The sun is shining brightly here so I hope we will see the same up north. I am looking forward to seeing Aunty’s garden, I just hope she won’t think me very rude if I keep nodding off.

Sorry only a short post as Colin is rubbing my legs with more cocoa butter and I am nodding off again.

Enjoy your holiday from the bank at least they are giving us something!

Love Deborah x

A great time was had..

…by all at yesterday’s family lunch. Granny made a lovely cake and we all mucked in preparing the rest of the lunch or entertaining Elliot. Eliot was once again the star of the show as we tried to relive our own family memories by making camps out of sheets in the garden, enjoyed more by us than Elliot I think. I felt as if a fog had been lifted which I think is something to do with swapping over to the Fenytl patches. Both Mum and Colin and later his parents commented on the change. Much of the afternoon was spent sleeping

Today we will spend preparing our motorhome for our trip to Dronfield, to see Aunty Judy, Uncle Ken and hopefully my cousin Matthew. This will be very exciting as I haven’t seen them for quite a while and it will be good to catch up.

Fingers crossed the new pain relieving patches will continue to do their job and in between times Oromorph and I are getting closer, on Louise’s recommendation.

Have a good day to you all

Deborah xxx

The visit.

Yesterday after Pollyanna had come and gone, delighted with her birthday gifts and copious amounts of kisses and cuddles, they are never too old for those IMHO (for those not so keyed into text speech this is translated into In My Humble Opinion ), Louise and Daria turned up. Louise is my extremely efficient, on the ball, lovely pain nurse and Daria, my psychologist who I have certainly met my match with and very skilfully doesn’t allow me to try to take over the therapists role. Louise in her usual efficient and assertive manner soon got hold of my GP practice and arranged for me to collect some old and new pain reducing medication. Daria who I am sure she brought along to check that I wasn’t cracking up, and could do a mental health assessment on both Colin and I, meanwhile talked to us both about how we were coping. I seem to not be able to switch off the waterworks at the moment, and through my tears I spoke of my struggle with the pain and tiredness I was experiencing. I was also able to share my frustration at having my harvesting postponed as I had seen this as the last bit of treatment for a while, and that after this, I could get on with recovering and returning to a normalish life, at least or a while anyway. By the end of our conversations I think we all agreed that both Colin and I were going through very natural responces to the situations we found ourselves in and there was no need for extra medication ie. anti depressants for either of us, at this moment in time.

How to be depressed

How to be depressed

The rest of yesterday was spent mostly sleeping and catching up on our recorded programmes such as the last and very brilliant, IMHO (are you getting the hang of this now mum?) episodes of Scott and Bailey.

The sun is shining this morning and today there will be more birthday celebrations for Pollyanna, (she like’s to extend her birthday for as long as possible), and Granny (mum) will bring along a birthday cake and we will be joined by Jem and Elliot for lunch. This is all before Pollyanna and a Rob jet off for a dirty weekend to Paris. Whoops, Pollyanna will never forgive me for this, she doesn’t do dirty weekends, so what I meant to say was that she and her boyfriend were off for a cultural visit to Paris where they will both explore and learn more about the architecture and history of the city.

I am looking forward to having them all here today, but I know I will pay for it later, as I will feel even more exhausted and find it difficult to stay awake for Britain’s got Talent. It will still be very much worth it, especially as Elliot is growing up so fast that even a week makes a difference.

I hope you all have a very exciting weekend to look forward to, if not you can always make your own excitement and I can thoroughly recommend conservatory camping, for bringing on the romance and livening up your relationship. If you haven’t got a relationship or a conservatory your b******* and at this drug fuelled moment I haven’t a clue what to suggest, perhaps a jigsaw puzzle?

Best wishes and do whatever it is with recklessness, after all you only have one life and you never know when that one’s going to be up!

Deborah xxxxx