Thank Goodness…

….that today I am seeing my pain nurse as I certainly have a lot to talk to her about and desperately need her help. The pain last night had reached its peak I hope, because surely it can’t get any worse. I must try a new type of pain killers because I am not sure the slow release morphine is doing the job. I don’t like to moan about it all the time, but last night I cried. I cried because of the pain and because I was sad. It is therefore a good job that the pain killer nurse is coming along with my psychologist as I need her too.

We are still camping out, or rather in and I am watching the grey skies and listening to the rain slash down on the Perspex roof. Today is a good day because it is the day my beautiful first daughter was born. I loved her from the very first moment I set eyes on her, or probably before. She has, and continues to, fill my life with joy and when I see her the sun comes out. She is sunshine and I couldn’t have picked a more perfect name for her than Pollyanna. Bright,funny,witty,generous Pollyanna, her mothers pride and joy. Stepping in my footsteps in the NHS she will make a difference as I have always strived to do. Today is her day and we shall rejoice (after I have seen the health specialists).

Day One

Day One

HAPPY BIRTHDAY POLLYANNA

May all your dreams come true. Enjoy life to the full and always look for the best and you will find it. Go out into the big world and share your sunshine so other people will smile in your presence and feel your warmth.
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Have a lovely day everyone and make sure you look out for the sunshine in the rain.

Deborah xxx

Tonight’s the night….

….where I may possibly be crowned Role Model of the Year. Thank you to whoever put my name forward. I know both my lovely husband and amazing sister nominated me for the prestigious title and I feel very humbled that they did such a thing and think me worthy of the title, that is enough of a prize for me. There are four other people that have been short listed in my category so I have a one in four chance of winning which isn’t bad odds. Talking about winning I am starting to feel very excited in the mornings waiting for the postman. I have entered quite a few competitions lately so I am visualising the winning envelopes and prizes to start arriving very soon.

Yesterday I really enjoyed my visit to the Hospice where I had a lovely aromatherapy massage and then a long chat with the doctor. The doctor at the hospice used to be one of the GP’s at my practice in Letchworth and his kids used to go to the same school as mine. He also used to be a mental health nurse so we had lots to chat about. Together we decided to try and increase the pain killer Gabapentin before going on to the patches and seeing if this made a difference to my pain. I have to step up the dose slowly so it may take a while to notice any difference.

I spoke to my HR department yesterday and it seems that they take into account any previous days sick when calculating when I would need on go on half pay. Unfortunately I had taken a couple of weeks off in September for anxiety due to my para proteins rising so quickly and me feeling understandably very worried about it. I just hope the half pay will not effect my pension as I am still contemplating applying for early retirement on the grounds of ill health. I am also concerned that when I return to work if I need to go off sick again in the same financial year I will only be paid half my salary and after six months of this I will not be paid anything at all. I have never been great with finances but I think I need to think about other ways of making money which brings me on to the book idea once again.

I hope you don’t mind me using you as my brain storming group? I did a little bit of research last night and I couldn’t find any easy to read books for patents who may be worried about their child’s mental health. All I could find were books aimed at professionals or books on specific topics such as ADHD or depression for example. So I do think there is a market there. So first of all I need to think of a book title. I think it needs to clearly spell out what it aims to do so the best I have come up with is. ‘Are you worried about your child’s Mental Health? A guide for parents and Carer’s.’ I know it doesn’t appear to be a very snappy title but its quite clear and simple I think and I wanted to imagine what a parent would type into google or Amazon if she/he was looking for such a book. I want the book to be quite basic, of few but important and relevant words and some nice illustrations. I want it to be easy to read and jargon free which might be where I need your help. Having been in mental health for many years now I may slip into jargon mode thinking unfairly that other people will know what I mean, so do let me know if that happens please. I will break the book up into age categories. For example birth to two years. What would make a parent feel concerned about their babies emotional well being between those ages. You would be surprised that many people do worry about things such as, should I leave my baby crying or my two year old is very clingy to me and I find it hard to leave him with anyone. Many parents are concerned that these things may cause their child to have or be having poor mental health or at least emotional problems. Between these ages there could be some signs that the baby isn’t developing as he or she should be so the book could point them in the right direction and towards the appropriate professional to seek advice from. There is a lot to write but as I said earlier I want to keep the book as easy to read as possible because there are already books out there that are far more academic.

So I have the book to think about today and the great problem of what am I going to wear tonight? The tickets state smart dress so I will have to dig something out of the back of the wardrobe and hope it still fits as I have put on quite a bit of weight lately. My excuse for the weight gain is that I need quite a good pinch full of fat around my tummy to inject the growth hormones into, so I have had to eat a lot more cream cakes lately! Hmmm perhaps I may have something left over from the Village Secrets event. Is it really almost 9am? Colin has already gone on his long walk with the dog and is offering to cook me breakfast now so I had better get up from my warm cosy bed and slowly meander downstairs. See having Cancer does have its advantages!

Have a great day today. I have a funny feeling today is going to be a good one now come on postman where are you?

Deborah x

The sun is shining…

…which is great news for barn clearing. Thank you to all of you who have volunteered to come here for about 10am and get the place tidied up ready for the big event on July 13th. Only three sets of tickets have actually been purchased, so please do get yours soon so we get an idea of numbers. If you are having problems just send an email to deborah.bone@mac.com We have over a hundred and fifty people who requested an invitation. If you haven’t received your invitation with the instructions about how to purchase your tickets please let me know.

Talking about events I would love it if any of you would be willing to come along and support me at the awards presentation being held in Letchworth on Friday May 17th That’s only next week!

If you would like a ticket you need to contact Sarah Scott by phone on 01438 866023 or email sarah.scott@archant.co.uk. The awards ceremony is being held at the Icknield Centre, I think tickets cost £10 but that includes a buffet supper. I am one of four who have been nominated as the community Role Model of the year, they will be announcing the winner on the night. I will feel a bit embarrassed if its just Coiln and I there so please come and cheer me on, especially if you were one of the people that nominated me.
Thank you

I am disappointed that I am not more well than I am now. If it wasn’t for the pain in my legs and feet I would be out there with my broom today joining in. I am as I have spoken about before on a lot of medication to try to help reduce the pain but to be honest I don’t think it is working that well but there again I don’t know what I would be like with out it. All I do know is that I am extremely fed up with it all and it doesn’t make me feel very confident about getting another bout of chemo.

I shouldn’t complain I know there are a lot of people worse off and I do have a lot to be grateful for.

Any way have a great weekend and I look forward to seeing some of you soon.

Deborah x

The bottom line is …

…I have got CANCER ( I am sure I have mentioned this before but it’s important I write it down in order for it to sink in!) and I might as well get used to it. It isn’t going to magically go away no matter the amount of visualising I do. I think acceptance is the answer to my future happiness. So after a few more tears and stamping around shouting why me, like a spoilt child, I realised I needed to get on with living. I have to re evaluate what’s important in my life and what I can now realistically manage to do. The pain in my legs is quite disabling and that’s when I am on the strong pain killers. I need to find out from other people who have suffered from Periphial Neuropathy how long this lasts. I also need to do little bits at a time and then rest and more importantly feel Ok about it. Yesterday I over did it, not that I did that much, because really I hardly did anything at all. This upset me as I felt frustrated with myself. I must however, consider myself lucky at being able to sit in the sunshine every day and have a lie in in the mornings. It’s about living in the moment and that’s what I need to practice in order to get better at doing. I am sure many of you would love to lie in the sunshine and not go out to work but just think of the cost!

My garden is beginning to look wonderful and I am very grateful to my mum for giving up her time to come over and pull up weeds, dig and sow seeds. She is over 70 and comes over after going to the gym where she swims over 20 lengths and she has Emphysema! She really is a remarkable woman, I wish I had her energy.

Well we should have some more good weather today, Colin and I are thinking of going camping all be it being in our back field. I sleep so well in the motorhome not that I don’t sleep well anywhere now a days. We also want to go and visit my Aunty Judy and Uncle Ken but we have started to sort out our spare room ready to decorate before the party so we can put up more guests. I don’t know how I ever fitted in working full time?

Tomorrow I hope to see Jem and Elliot and the following day Pollyanna and Rob. Both girls are very good and understand I can’t do much before getting very tired. Pollyanna has already offered to bring and cook the lunch on Monday.

I almost finished the party invitations yesterday but I need to send them to the committee for approval first in case I have missed any thing out which is quite likely.

I think I may have a lie in this morning, Colin is up and out already picking up our online shopping. Online shopping at Tesco’s is great as I didn’t start it until 8pm last night and they will have it all bagged up ready for us to collect by 8am. It is one of the small things I can do to contribute towards the daily chores, I imagine the shops will be pretty busy today.

I was just thinking of what I have missed since becoming ill and what I have gained. I bet the gained outweighs what I have lost let’s see.

Things I miss
Work (I really did love my job)
My colleagues
Energy
Shopping
My hair
Cooking for my friends and family
A delusion that I will live for ever

Things I have gained
Lots of new friends.
More time to spend with my lovely husband.
Having more time to see my children and grandson.
More time to see my little dog Frodo.
Enjoying my home and it’s surroundings.
All the goodwill and kindness I have experienced.
Not having to wait until the weekend before I go out.
Short hair, it’s so much easier to manage.
Help to do daily chores like housework and ironing.
A love of writing, I just wish I could make some money from it. I never did hear back from any of the journalists I was introduced to 😦
Time to write.
A better understanding of the fragility of life.

So it’s easy to see I have gained much more than I have lost.

Don’t wait for a big shock to wake you up to the important and beautiful things around you

Enjoy each moment for what it is.

I think I will have another nap now.

Deborah x

Back down to earth with a bump.

It is important to visualise, to dream and to be positive but at times you also need to be realistic. This is the lesson I learnt yesterday, not that I didn’t already know it but I had allowed my fantasies to perhaps go a step to far. Yesterday my consultant brought me back down to earth.

I was excited about my visit to see the consultant. I had imagined him hugging me and shaking Colin’s hand,congratulating us for beating all the odds. I had visualised him telling me that now that I had no para proteins in my body I was free of cancer. That is what I, my friends and family all wanted to hear. This is what we had been saying to one another. You don’t have cancer now. The doctor told me differently. The bits I heard before my eyes glazed over with tears and my emotional brain took over from my thinking one were;

  1. You will always have cancer
  2. You still have cancerous cells in your bone marrow 
  3. The blood tests show some areas of high risk
  4. The pain in your legs may take months to get better and in the worse scenario may never go away
  5. You should go and make good use of your local hospice and get to know the people there.

The reality of the conversation as translated later by Colin was; Yes I will always have cancer and that although my blood tests show no para proteins, this actually means that there are no active cancerous cells (just dormant ones) which indicates that I am in a period of remission. The doctor was delighted as to how well I had responded to the trial. He did say there were some indicators in my blood that showed I was in a high risk group but there were also some positive indicators too. The doctor couldn’t give me a timetable as to how long it would be before I needed the stem cell transplant but he did say it definitely wouldn’t be ten years (I am of course going to prove him wrong on this point!). The neuropathic pain in my legs may take several months to subside and in some cases it doesn’t go away all together.

I also met a new nurse who took me through my next time table events, spoke to me briefly about what to expect and have me a big pack of reading material to bring home. My next appointment is May 21st. On this date I will need to get another ECG done , see the consultant and have a two hour slot with the harvesting department, (I think it has another name but I am not sure what this is yet) to go over the consent forms and sign them. There must be a lot to explain if it is going to take two hours?

So my harvesting timetable is:
May 21st – consent appointment
May 25th – chemo
May 26th – injection with growth hormone (this can be done at home by myself or a willing volunteer)
May 27th – injection with growth hormone
May 28th – injection with growth hormone
May 30th – injection with growth hormone
May 31st – injection with growth hormone
June 1st – injection with growth hormone
June 2nd – injection with growth hormone
June 3rd – go in for Harvesting
June 4th – go in for Harvesting

During this period and apparently for a little while afterwards I am apparently likely to be Neutropenic. This means that I will have a very low white blood cell count therefore more open to infection. I apparently must take this very seriously and there is even a special diet you must follow when you are Neutropenic which is a bit like the diet restrictions for a pregnant woman. No uncooked meats, pâté etc, no raw eggs, soft cheese like goats cheese (my favourite) and no probiotic yoghurts. It doesn’t seem too bad a diet anyway.

I must admit I was quite tearful yesterday so I did pop in to see the lovely ladies in the Macmillan room and they helped to calm me down a bit. Maybe it was because I just felt very tired yesterday, perhaps the time away had caught up with me? I suppose also that I had been feeling a lot better and thinking more about my future and going back to work sometime. I think the hospital visit yesterday has re confirmed that my life has changed and that there will be no going back to it as it was. I think maybe I need to take this positively and see it as a time to look at different opportunities. This would all be fine if I could include winning the lottery in my plans then I wouldn’t need to work.

Today I will rest and perhaps start reading the pack of information given to me yesterday. I would also like to get the party invitations done and dusted if only I can get a clear enough head on.

I hope that it’s a good Wednesday for you all.

Try to do something every day that you enjoy as you never know what is around the corner!

Best Wishes

Deborah x

Lazy Sunday

Yesterday we decided to move on and be really adventurous. This time we drove all the way to…..Peterborough, approximately 50 miles from home and goodness knows where the hospital is?  That’s a sign of confidence in my fellow travellers as to how well I am appearing. This time last week it was touch and go if we were even going to get away together at all.

Last night we were joined by William (my brother-in-law) for a fish and chip supper. Last weekend him and Colin cycled together around the lake here. I must admit I haven’t ventured much further than the toilet block but apparently we are on part of a very pretty nature reserve and next door to the Neve Valley Railway which runs a steam train every few hours. (luckily not thoughout the night!).

Today will be a lazy Sunday, sitting around reading magazines and enjoying a cooked breakfast and probably yet more scones with clotted cream. I am sure I would never get away with this if it wasn’t for the cancer. It’s funny because it wasn’t long ago I was complaining of not being able to do much other than lie around, somehow this has always been much more appealing in the motor home. Perhaps it’s being away from home where your not surrounded by all the jobs you think you ought to be doing. The slow release morphine tablets I am now on, are doing a really good job of killing the pain so I am feeling much brighter in myself which maybe you can tell through my writing?

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I look forward to being well enough to travel abroad again and I am hoping that will be sometime later this year. I may find out more when I see the consultant on Tuesday. I am certainly hoping to get a date for the stem cell harvesting.

Every time I think of the stem cell harvesting, I want to sing ‘We plough the fields and scatter the good seed on the land’ The Miranda moments are returning, a true sign of my current mental health state! I wrote to Jarvis a few weeks ago, whilst high on steroids and whilst being fully immersed in Miranda mode, quoting songs I was going to sing him whilst standing on the table, funnily enough I haven’t heard from him since!

Next week party plans will be full steam ahead and the invitations WILL be prepared and sent out, bar any further health problems. Feeling a bit brighter I think I will enjoy a period of convalescing and maybe even get back to that painting I started, which seems such a long time ago now.

Back again

I suppose another trip down to London makes a change from which sofa. Another blood and urine test is called for. We will leave early to get it over and done with ASAP. Perhaps Janet will have my latest para protein results which will make the visit more worthwhile.

Yesterday I met a new pain nurse who is sorting out my medication so that I can try out a different combination that may help. I also got a call from the hospice inviting me down to a drop in on Thursday. I never imagined being invited to a hospice for a cup of tea. Apparently I can then get to know some of the other folks who go there but it got me thinking how long they are there for before they pop their clogs. I am not keen on going to a Hospice but there again I wasn’t keen on having a Palliative Care Nurse or having cancer, I suppose it’s just another thing I need to get used to.

At the moment I am imagining that the reason that they can’t seem to determine my latest para protein results is because a miracle has happened. They can’t find any sign at all of the disease. I will then write a book about my experience and travel the world talking at conferences, I may even appear on DayBreak.

On another note, I have just finished reading The woman who went to bed for a year by Sue Townsend. It was very amusing and definitely worth a read. Fancy going to bed for a whole year just because you fancy it. The chaos it causes for the woman’s hapless husband and obnoxious teenagers is just as you would imagine and worse. It is not something I would fancy doing especially after my recent sofa surfing experiences.

The sun seems to be shining here again today, I hope it keeps this up for our weekend away.

Have a good one

Deborah x

Thank goodness…

…that’s over for a little while. No more trips down to London, at least not until my consultant appointment a week on Tuesday. And no more steroids, today I expect quite a crash down but to be honest they haven’t provided the energy I had really hoped for. Following a lovely spaghetti bolognaise freshly cooked by Jem for an early tea, or rather late lunch, I was back home asleep on the sofa by 5pm waking only briefly for a bowl of cereal and to catch up on Masterchef.

Today will be a day of rest but I will try again to work on my party invites. Sue and Angela may pop in later which will be a good break from lying there. And Oh Yes Louise, my Pain Nurse will be most welcome at about 3pm, this will provide a good opportunity to reassess my
current medication as I think I am relying on my new mate Oramorph a little more than I should.

I wonder what the weekend has in store for you? What do people usually do who have more energy? I feel like I am becoming out of touch with normal life. It is hard to imagine life without fatigue at the moment but I was told yesterday that the tiredness was just the cumslitive effects of all the chemo drugs and may take some time to get over.

Oh well more succumbing to do for me.

Deborah x

Blame the Amitriptyline…

…for the lateness of this post. Yesterday the consultant decided to add this into the mix of all the other pain killers I am taking and it really knocked me flat out. I did however wake up in the night and had to take some more pain killers and this morning I was in agony so had to call on my new best friend Oramorph.

A big Thank you to Kate who kindly drove me to hospital yesterday. The good news is that I can start on cycle 4 next week. This will be my last cycle then I just have the harvesting to go before being drug free, I hope. So I should have a slap up meal this weekend as I am likely to lose my taste buds again. The consultant said I had, had a partial response to the chemo but I would like a complete full responce so let’s hope the next lot of chemo knocks the last five stubborn little b****** on the head.

I think I shall spend most of today sleeping but I may have a couple of work colleagues popping in to see me this afternoon. Bless Colin I can hear him hoovering and tidying up a bit downstairs just in case. Our house never seems to look very clean and tidy because due to a lack of funds we have a hotchpotch of furniture and a collection of stuff as I am a bit of a collector of all sorts of bots and pieces and we are quite short of storage. However most people who visit say they love our Home as its so cosy and relaxing and end up wanting to stay for hours. Maybe it’s the lovely wood burning fire. I can really recommend getting one and I have a friend who together with her husband runs a company that supplies and fits them. Our best friends Sue and Angela have had a woodburning stove fitted in their kitchin extension and can recommend their services. I will ask Heather for a web address link to her site and add it later.
Here are the links you need to see some lovely fireplaces:

http://www.hertsfireplacegallery.co.uk

http://www.facebook.com/pages/Hertfordshire-Fireplace-Gallery/100504993347148

This post has been written in quite a dopey state so please forgive any mistakes, I am not sure all will be back to normal tomorrow as I will have another Amitriptyline tonight. Watch out for Monday though when I start again on the steroids and keep me away from any shops!

Deborah x

Let me introduce…

…my new best friend Oramorph. He really is something special and provides me with relief every 2-4 hours if I need it. One of the local Macmillan nurses kindly called me yesterday and reassured me, that I was doing OK, I was concerned that I was using Oramorph too often and that I might be becoming addicted. Yesterday I went out without him and I certainly missed him after a few hours, next time I will remember to bring him along.

Talking about yesterday, we had a good meeting with Kate and Martin. It was all quite emotional as mummy and Kate shared stories and photos of their late fathers. I must however correct a few points from yesterday’s blog. My grandfather was in fact, going to be Kate’s brothers godfather if he had lived, and my grandmother wasn’t pregnant at Kate’s fathers wedding, not that those small details will make any difference to you but I do like to get my facts straight.

Whilst at their very grand home they showed us around their beautifully manicured gardens and best of all I got to stroke a couple of their Alpaca’s. It was lovely to meet the couple and we look forward to seeing them again sometime in June.

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Today I am going to rest, Oramorph has the tendency to make me feel very sleepy. Then tonight we are getting together for a party committee meeting. I am very grateful to all the people who are willing to come along and help organise my Summer Party. It is amazing how much needs sorting out and sadly I don’t have the energy to do it all on my own.

Tomorrow is yet another hospital visit and I hope to find out when I can start back on treatment. I really want to get on with it so I can then get my stem cell harvesting out of the way and start on my road to recovery. The longer it takes the closer it is coming to my party and more worrying, my six months full pay running out. It does concern me as I really can’t afford to go on half pay and need to get back to work although I know at the moment there is no way I could manage this. Oh well I will find out more tomorrow and as long as they don’t try to take my new best friend away I will just have to lay back and take what’s coming!

Enjoy your week.

Deborah x