A trip out…

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

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

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

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

Best Wishes

Deborah x

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

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

Just a quickie…

…I know I have said that before and ended up going on and on, but this time I mean it. I need to get up and have a bath for today’s outing. Going out anywhere other than the hospital is pretty rare nowadays so it is quite an event. I expect your wondering where I’m off too well don’t get too excited, I’m going to the drop in for a cup of tea at the local Hospice. I would never imagine I would be going there in any other capacity than as a professional. I have been told that Hospices do many things other than care for the dying so I am going to find out. Classed as being terminally ill does have some benefits and I may be able to a access a variety of resources that could help manage my pain. Unfortunately the pain in my legs is getting worse rather than better and last night it woke me up resulting in me taking an extra swig of Oramorph. I am hoping some reflexology or acupuncture might help. As long as it goes by the time of the party I will be happy. Just on the subject of the party did you receive your invitation yet? If you have don’t forget to double click on the attachment to properly see the invitation which clearly shows the date and time. I am a little concerned that the although it looks fine on my mac it may not come out the same on a PC so any problems please just let me know.

Besides that my team manager is coming over for lunch today. I haven’t seen David for a while now and I just hope he will fill me in with what has been happening at Step2. Unfortunately David is a great believer that if you are off sick you need to concentrate on getting better and not be worrying about work. I however find it helps me to know what’s going on although I will probably be a little tearful today as I do miss my old routines although it is nice to sit out in the sunshine, and I am afraid at how I am going to manage to get back into work. The medication I am taking, the majority of which is for pain, makes me so dopey that I am not sure how much use I would be at work right now. Never mind hopefully things will improve. My pain nurse is bringing the psychologist along with her on her next visit as she thinks I may benefit from seeing her again. Maybe she is right as I am a little tearful at the moment. I think this is mostly at the reality of what I have lost and the fear of not regaining my old self.

Oh well I did say this was going to be a short one and any moment Colin will be shouting me down for the bath. Did you know most of my blogs take over an hour to write but I think I have got away with about 20 minutes this time.

Have a lovely day and on your way home from work or when you get 5 minutes to yourself just list the things you have to be appreciative of today then smile because living is good and most of us are very fortunate and privileged.

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

This blog is getting….

…later and later as I keep turning over and going back to sleep! I have come to enjoy sleep maybe it’s because I am feeling much better now and I feel as if I am choosing sleep rather than having it forced upon me. Yesterday I spent a lot of the day sleeping but it was punctuated by an afternoon visit from Patrick, the retired vicar in the village who has become a friend. It was good to share a rock cake with him and share stories and experiences.

We have been spoit recently by home baking and if I wasn’t going to hospital today I may have a go at baking some scones myself to use up the rest of my clotted cream. I have tried to bake in our Rayburn before but it’s turned out a bit of a disaster however I think it’s worth another try.

We bought our Rayburn for £26 from eBay and its very good but you do have to remember to fire it up in good time as working on just wood and coal it can take time to warm up then judging the temperature and keeping it constant can be quite tricky.

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Well off to the hospital this afternoon to see the consultant. I must get together a list of questions to ask him or her (I am never sure which doctor I will see). I especially want to request that I get on with the harvesting as soon as possible, so hopefully I will see Janet today. It feel like a second home now as I have got to know the staff and the lay out pretty well now. UCLH is an example of an excellent hospital (in my humble opinion) and my treatment couldn’t have gone more smoothly. I am really pleased to give something back in return. The Summer party will raise money for research into Myeloma. The research for this is done at the University College London Hospital. This could find the cure and make a difference to lots of people as more and more are being diagnosed with the disease.

Talking about the party, Colin managed to set up the bank account, but I failed at my part of putting the invitation together as I was so dopey yesterday, so I will give it another go tomorrow. It will be done by the end of the week whatever!

Have a good day

Deborah x

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

Day 4 of cycle 4 ….

…. and hopefully my last lot of chemo at least for a few weeks. I will need to have some chemo as part of my stem cell harvesting but I think I get about a three week break before that starts. I am still awaiting my last para protein results as they have had to be sent off for extra tests perhaps because they aren’t showing up at all and they are all too feint to quantify, that’s my dream anyway.

It was lovely to have the company of sister yesterday who now knows the journey so well and it gives us a chance to catch up with all our news. As I had more energy than usual and the disabled badge, we found an ideal spot to park in Hampstead. Kate was hungry for a healthy looking lunch so we found a little cafe up a back street selling freshly made fancy salads at quite a fancy price. She had then been craving a not so healthy crepe for sometime now so we found the stall and sat on a bench trying to spot any famous folk who we know live in the area. Our star spotting failed but we really enjoyed our pancakes.

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By the time we arrived home I felt pretty tired so any hopes of working on the party invites were sadly put to one side as I fell asleep on the sofa until it was time for bed. Even with the steroids I find that I am able to do less and less which is pretty disappointing. Lets hope that comes to an end soon. Once the stem cell harvesting is over I see myself on the road to recovery, I am visualising the neuropathic pain away followed by a few weeks of relaxation and recouperation that will lead to me finally getting back on track and into work again.

Jem is making us supper tonight which will save us a job and give us a chance to catch up on a cuddle with Elliot which is rather overdue.

Have a good day again.

Deborah x

The fight continues…

….and the steroids together with some hot flushes beat the Amitriptyline hands down last night I am afraid. Still I should have enough energy produced by my next dose to see me through the day.

Yesterday was a good day and I thoroughly enjoyed my time spent with a group of women who are all currently undergoing chemotherapy treatment. We were all there for a ‘Looking Good, Feeling Better’ workshop. These are delivered free of charge by a charity that has been set up to especially help women deal with the visible side effects of cancer treatment. We all received a goody bag full of good quality make up, cleansers, toners, moisturisers and perfume. There was one beautician per two people and they carefully demonstrated each of the products and then we had a go at putting it all on. So here l am very bravely showing you a before and after shot although looking at the last photo I think there may be a little more work that needs doing yet.

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This charity really does help people come together at a difficult time and bring some joy into their lives which is much needed. Take a look at the good work they do by visiting their website if you fancy.

http://www.lookgoodfeelbetter.co.uk/site/about_us.cfm

Today Kate is taking me in for day three of cycle four which will give Colin a much needed rest, I am just hoping the roads are not too disrupted by Margaret Thatchers funeral.
You never know if I get through my treatment quickly enough, we may take a pit stop in Camden or Hampstead on our way home all made that much easier by my blue badge and my steroid fuelled energy levels.

Enjoy your day.

Deborah x

How could they refuse….

…a face like that!

Honestly what do I look like? Don’t answer that!  Being the proud owner of a blue badge does have some good benefits including not needing to pay for our parking and it being closer to the hospital. And just think of my next shopping trip out, I just need to go whilst on my steroids it’s such a shame that I only get those on the same days I have to attend for my chemo.

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I am feeling good as the steroids have kicked in so I have started writing this blog the night before. I am wondering what sort of night I will have? It will be a fight between the Amitriptyline and Dexamethasone. I can just see it on the Harry Hill show. There is only one way to find out…. ‘FIGHT

I shall have to let you know who wins in the morning, you will probably be able to tell by the time the blog goes up tomorrow morning.

Well they both put up a good fight but I think the Steroids are slightly ahead of the game as I would usually be still asleep now without them. I haven’t been knocked out all night either, with the steroids interrupting my sleep, when it could. At least I should be able to enjoy a day with more energy today it’s a bit of a shame it is broken up with another visit to the hospital at midday. I tell you I could do with a few of these steroids for the day of my party. I have never been an advocate of drugs although I can understand the benefits of prescription drugs when required I suppose, but I have seen too many GP’s turning to drugs all too quickly for people with depression without perhaps exploring other options first. I do however know I couldn’t manage without the enormous amount of medications I am now on especially those for pain. I can also better understand those accessing illegal drugs especially before a gig as the steroids definitely enhance your performance and give you extra energy, not that I am advocating illegal drugs in any way though as you never know what they have put inside these things, never mind it being against the law. The problem is when you get round to having to stop them. I have to stop my large dose of 20mg suddenly (at least they have been reduced from 40mg because of the side effects) with no titrating down. This can cause quite a low period as I go from feeling great to being back to having to lie there most of the day on the sofa.

Still lets look at the bright side, I shall try and use the extra energy I have to work on my party invitations. These should be ready to be emailed out by next week, I hope so people can put the date firmly in their diaries,if they haven’t already, and we can get a better idea of numbers. At the moment it looks like we are up to about 140 and that is just with friends and relations. 150 is really our optimum amount of people in the space we have available. We are borrowing a couple of large marquee’s just in case of rain. We are also hoping to get hold of some large BBQ’s to borrow so people can use those if they fancy bringing stuff to cook with their picnic. I feel really confident that this Party is going to the best ever with so many kind people helping out, an exciting band and great live singers also so many old and new friends coming along.

Yesterday whilst having my beetle juice I was visited by my nephew Ed from my first marriage. I hadn’t seen Ed for many years (at least 10 I think) so it was lovely to see him having grown up into such a lovely articulate young man. It was fascinating to hear about his job as a navel architect. I had never really heard of such a thing and he is working only across the road from the hospital, far away from any sea. He is currently working on a project to do with oil rigs and ensuring the one he is currently working on, much more stable than it is. I was delighted to see him and it took my mind off the chemo, but the poor lad was having to experience my drug induced chattering.

I also received an email from a childhood friend and another contact from a work colleague that really cheered me up. There are so many good people in the world, and having cancer has opened my eyes to so many positive experiences that I am even more Pollyanerish than ever.

I have also come to learn that my lovely husband and sister have put me in for a local award in the comet newspaper. People who know me well know how much I love awards and have collected quite a few already. If you would like to ensure I win this one and you think I am at all worthy of it, you can add your penny’s worth before April 26th by going to;

http://www.cometcommunityawards.co.uk/enter-online/

So Colin is driving me down to my Parallel Universe again today and I have an extra treat in store. I will be attending a beauty and hair, or lack of it, event at The Macmillan centre. Looking at my blue badge photo you can see I badly need it! I shall try and take some before and after photo’s.

Have a good day yourselves today and don’t work too hard. Please try to ensure a good work/ life balance, you will be far more productive if you can achieve this.

Deborah x