Postponed

I am sure other myeloma friends will be able to relate to how difficult it can be when you build yourself up for a procedure and then it doesn’t happen quite as planned. Don’t get me wrong, I can thoroughly understand and I am grateful for, my consultants decision to postpone, which he made with my very best interests at heart, but it is still very disappointing. The harvesting of my stem cells doesn’t come without its own complications, and the first few hours of yesterday afternoon were spent with Jude, my new harvesting expert, who excellently and very patiently took me through the procedures and processes of what to expect over the next couple of weeks. This included the possible side effects of the large dose of chemo and how this and my daily injections worked with my bodies own systems. The chemo is given to kill off my grown up blood cells encouraging the bone marrow to produce the stem cells which are baby blood cells that have yet to be given a job, i.e. become white blood cells, red blood cells or platelets. Timing is of the essence in collecting the stem cells so special blood tests are carried out to establish exactly what stage you are at. The process can cause bone pain especially in the pelvic area where the biggest mass of bone marrow is. Imagine a piece of bone marrow stuffing itself with baby cells pushing themselves against the sides, ready and eager to come out. My special stem cell collecting machine needs to collect these at the point when they are ready to burst out like a fountain, too soon and there won’t be enough in there and too late they will have already burst out into my blood stream. Both the drug I inject myself with and the bodies own system will be promoting the growth of these new baby cells because the chemo has killed off all or most of my grown up blood cells, this is why at this point I am Neutropenic, meaning I have a very low red and white blood cell count making it easy for me to pick up nasty bugs and then harder for my body to fight infection. Because of this I have to be very careful in ensuring as best as possible I don’t pick up a bug from other people or certain unwashed or uncooked foods. It all makes so much sense now and both Colin and I are very grateful for Jude’s excellent use of drawing and metaphors to help get the message across. Whilst with Jude, I also got to see another patient in the full throws of harvesting with blood coming out of one arm and being put through this amazing machine and then fed back into the other arm. So you can perhaps imagine how I felt after hearing all this and confirming all my dates, I then go to see the consultant who thinks we need to postpone the whole process! The reason for his decision is that my peripheral neuropathy has reached such a peak and the side effects of the next chemo could make the pain worse, that it is best to wait until my pain subsides a little. The good news is that he is at least hopeful the pain will reduce if not completely go away. I also discussed with him the idea of possibly retiring due to ill health and although he said he couldn’t decide for me, he thought this was a sensible route to take. Unfortunately with Myeloma it is never a clear picture as to what will happen next and within what time frames. Some people come through the transplant well others don’t come through it at all. There is definitely one clear thing and this is that, at this moment in time, there is no cure for myeloma and it won’t go away of its own accord. So I might as well enjoy the periods of being well, inbetween the times when I will be requiring some sort of health interventions, doing something I enjoy with my husband and family rather than spend these times working at fighting somebody elses health battle. Especially when I am ill and requiring more treatment again I will be back on half pay and after another six months on no pay at all.

Still I don’t have to make any sudden rash decisions I am just chewing over the fat and thinking what is the best for us all, like I said yesterday I wish I wasn’t in this bloody position in the first place but I am, so that’s just that!

I may just stay put today, in my conservatory bed looking out on this magnificent view whilst writing another chapter of my book.

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Best Wishes to you all

Deborah xxx

A trip out …

….to the village art club exhibition and I am floored. (Not sure if that’s how its spelt but it will have to do) I was only out for half an hour. When I got home Pollyanna was here for a short visit. Bless her she looks so tired from working so hard. Just like her mum she is stretching herself to the max and is very passionate about working for the NHS. Toby also popped in for a quick visit but due to extreme fatigue and the background of continuous pain I couldn’t talk for long before becoming tearful and having to excuse myself for an afternoon sleep. Multiple Myeloma really sucks sometimes!

I have nothing planned for today or in fact the next few days but that’s OK with me at the moment I am appreciating the time to be able to rest before the next chemo onslaught.

I think I may however contact my pain nurse again today as I feel I need to get this pain better under control before it drives me crazy.

Mentally I think I am not doing too badly. I know that depression can play a big part in the Cancer journey but so far I think I am keeping it at bay. Oh I do have the odd moment when I think why me, and have a little cry at times when I feel frustrated by the little I can do, but I think that’s perfectly normal and acceptable for a person in my current position.

On Friday I have my evening event to look forward to, the Comet Awards ceremony. The dress code is smart attire so I had better try and dig something out of the back of my wardrobe as recently I have been living in my pyjamas or track suit. It starts early which is good I just hope I can stay awake until it finishes. If only I had some left over steroids to liven me up. Well just for your eyes and nobody else’s I did find a left over packet of ten steroid pills. The trouble is I have never been that much of a risk taker, having said that, I do take risks, especially in the work place, but they are always well calculated. I wouldn’t dare take a drug without the advice of somebody far more qualified than I am.

I wonder what your day has in stall? I have always been interested in other people’s jobs and once wanted to make a TV programme about me joining a lorry driver, pilot, politician etc for a day in the life of. This reminds me, some time ago I used to run a MAD (Making a Difference) group. You might think the name of this group sounds very politically incorrect but it pulled in the audiences I needed, which really mattered to me if we were going to make a difference to children’s mental health and emotional wellbeing. I had up to 50+ professionals attending to find out more about mental ill health, share ideas and information about each others roles etc. It always included a day in the life of….a psychiatrist, psychologist, school nurse etc giving the audience a better understanding and respect for each others roles in improving children’s mental health. That brings back some memories I wonder if anyone reading this remembers coming along?

Another job idea I have had is sitting in a service station with Colin filming me interviewing people for perhaps just 5 minutes to find out where they are going and why. Perhaps it’s because I am just mega nosey!

I have also always loved the idea of working in advertising. Oh so many ideas to think about.

I may even get back to my painting or book writing today but first I think I need another nap, all this thinking is pretty exhausting.

Have a good one yourself

Deborah x

Well what can I say.

Yesterday I visited our local Hospice, it was their drop in morning where people like myself are invited to drop in for a cup of tea, make use of the facilities and find out about the holistic services on offer. The staff there were genuinely caring and wanted to do the best for me. Having said that, without appearing rude, it reminded me of an episode of Waiting for God. I think it has been designed for the older clientele. The literature with its lilac colour and flower design would be more appealing to the older age group and reminded me of something I might pick up at a funeral directors. I was able to meet the therapist who gently told Colin and I how having counselling may help as improving mental health can contribute to better physical health! I have an appointment there next week to be assessed before I can access any of the free therapeutic interventions like acupuncture and reflexology. At least I gave it a go and know what’s available now, but I did find it a little upsetting to be there at all.

My good friend and the team manager of Step2 popped in for lunch, which was great although I have lost some confidence when talking to people. The amount of drugs I am taking and need for the pain are making me very dopey and disorientated. I quickly lose thread of what I am talking about and feel embarrassed when it must appear obvious that I am struggling to keep up. I was also tired out from my morning outing so needed to excuse myself to have a lie down which turned into a three hour sleep.

Today I hope a new friend that I have met through the internet and also has myeloma may get a chance to pop in later if she isn’t too tired. It will be nice to chat to someone who has gone through the stem cell transplant and can really empathise as she has the same condition.

Have a good day. The weekend is almost upon us and I look forward to seeing whoever is joining us for the barn clearing and bonfire tomorrow.

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

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

Oh dear…

…just look at the time, 7.30am already and I have just woken up. Typical when you have someone coming round at 9am. I took a sleeping tablet last night and it seemed to do the trick. I woke just the once to take some additional pain killers but the rest of the time I must have been flat out. My visitor is the palliative nurse who is coming round to help me better manage my pain. Palliative nurses are there to help lots of people with curable as well as incurable diseases which is a bit of a relief. I used to think they were just for the dying and I am not willing to be put in that category.

It was nice to have so many visitors yesterday as it helped distract from the pain in my arms and legs. I saw my parents who brought round more chocolates and a lovely friend Jane who was sometime ago my line manager. I love her calmness and could talk and listen (I hope I do do some of that) to her for hours as we never seem to run out of things to chat about. Then Jem popped in with my lovely grandson who I think is extremely intelligent and is a joy to be around. I just love to see him look through my different Kilner jars filled with interesting objects. And then our best friends Sue and Angela popped in whose company Colin and I always enjoy and we never cease to find something to laugh about together.

Talking of Kilner jars, just before Christmas I became a little bit obsessed by them and must have bought at least thirty. The idea was I was going to fill them with different things personalised to suit the receiver as their Christmas gift. In reality I only made two. One for a crafter filled with lots of crafty bits and pieces like special buttons and threads, fancy stones and other arty embellishments. And one for a good friend, which I called Jaqui’s Emergency Jar. It that contained all the sorts of things you might be looking for but never seem able to find when you need it, like, a pound coin, pencil, tape measure, plaster, needle and thread, memory stick etc you get the drift? My sister and children rudely requested that I didn’t make them one! So most of the rest of the jars adorn the shelves around the walls of my parlour. I love seeing them up there with their pretty labels, lace ribbons and fabric jam cover tops (not that they are coveted in jam but the sort of tops your grandma cut out to decorate the tops of jam jars!) just thinking about Kilner jars fills me with joy and I am open to requests if any one else would like one made especially for them. You probably need a certain type of house to display them in I suppose, these special gifts aren’t meant to be shoved to the back of the cupboard.

Oh well I had better rush and get ready I can’t have a fellow health professional think I live in a tip so I have washed my best Calvin Klein pyjamas especially. It wouldn’t be right for her to turn up and see me in these Primark hole covered ones however comfortable they are.

I must share with you that I am very excited about receiving a new magazine through the post. One reason is, I just love post. Colin and I used to childishly hide behind the door, ducked down below the letter box, to try to be the first to grab the letters (most of which were just bills, but could be a competition win). It always frightened us to death if the postman knocked on the door and we would have to stifle our giggles and stand up suddenly, pretending we were just sweeping the floor or searching for something down there. We can’t do this in our new home as there is a large glass sheet in the front door and the letter box is much lower down. Plus we have grown up a little bit since then. Nowadays I just pull out the cancer card which if I am lucky gets me the best things first, but this I am afraid is wearing a bit thin now. My very generous and kind Aunt in Australia has sent me a subscription to Compers News. So I am going to get back on the competition trail, how exciting is that! I am already dreaming of all my possible wins so you can see why I can’t wait to receive my first edition.

See how much better I am for a real good nights sleep!

Have a great day folks.

Lots of love

Deborah xxx

Ps feeling better seems to equate to an increase in exclamation marks! Sorry Uncle Jack! Xxx

Pain vs Pleasure

Yesterday I experienced more pain than pleasure I am afraid especially towards the evening.

It was a pleasure to see my daughter and lovely grandson and I really appreciated the fish and chip lunch and birthday cake they brought round.

It was also a great pleasure to have my very brave husband home. Colin got through the angiogram to be told by the cardiologist that he had excellent arteries and a healthy looking heart. He and I were of course delighted by this news but also rather confused as to why he is experiencing chest pain and feeling very tired following doing quite menial tasks. More investigations need doing I think. We do appreciate that stress may be a factor but I think something else may be going on.

None of these pleasures could balance out the pain I was feeling last night. The pain definitely increases in the evening so I lay there feeling really sorry for myself and actually crying with the pain which is very unlike me. I tried hot and cold presses, took double the dose of Tramadol, paracetamol and then a sleeping tablet. Together this eventually did the trick and knocked me our for the night.

This morning it is not so bad, perhaps a 5/10. Good job as I have some last minute prep to do for tomorrow nights Village Secrets event. I am really looking forward to this and will NOT allow any amount of pain to get the way. The only disappointment will be that dosed up on pain killers I will not be able to join the girls in a glass of a Prosecco 😦 I will not however let that stop me from having fun.

I hope you all have more pleasure than pain today, in fact I hope you have no pain at all.

Have a great day.

X