The little hiccup grew into a bigger problem

So I have been stuck in my local hospital since Monday.

It all started well with a quick pass through A&E to be seen by the doctors. After being there for quite a few hours, Jem kindly popped in with sandwiches, crisps and biscuits for Colin which he really appreciated.

I was eventually admitted to the short stay ward. Here the welcome wasn’t quite so good starting with the nurse saying “put him in the side room, Oh I thought it was a man”     I must admit however after tweeting about my experience all complaints were very quickly and professionally dealt with, and I was seen by a very caring Modern Matron.

I have since moved to a respiratory ward where the care is excellent and the nurses very caring and professional.

Now I am waiting for another scan. I have already had a chest X-ray, heart scan and CT scan of my lungs This time they are looking at my liver, kidneys, spleen, gall bladder and abdomen. A thorough MOT.

It looks like a chest infection is responsible for my fluctuating high temperature, but they are not ruling anything out. So we are going through the rounds of tests and different combinations of antibiotics to see if they can find out what works.

I did have a lovely visit from the Haematology nurse and doctor who are liaising with UCLH.
And yesterday the Pallitive care nurse popped in to see me, which helped. As well as visits from Polly, Mum and Colin. And a lovely surprise parcel from Kate of some leggings that might actually fit. I must have lost two and a half stone so most my clothes literally fall down!

It’s a shame as things were going so well and I was slowly recovering from the transplant, but apparently my immune system is still very compromised. Sadly we missed seeing a show in London with Sue and Angela and to meeting up and talking motorhoming with our friends. Never mind I expect there will be other times.

Tomorrow we are due to pick up our new car but I doubt I will be able to share that experience with Colin now. It looks like I may be here until MONDAY, I do hope not.

There is no TV, not that I have the energy to watch it anyway.

Trying to keep my pecker up!

Deborah xxxxxx

It will be no laughing matter…

…if the new process doesn’t work. Today I am off for my seventh bone biopsy. Three of these have been without sedation the rest I have been put to sleep. I can tell you it’s very painful without. Apparently now UCLH has a new process which no doubt saves time and money. I shall be having a local anaesthetic and laughing gas! I can promise you I definitely won’t be laughing if it hurts too much.

I did receive some good news yesterday, when I spoke on the phone to my myeloma nurse. Apparently my paraproteins are now so small in numbers they are undetectable. This is a victory for my stem cell transplant and hopefully the biopsy will further confirm this.
The news to me is reassuring but not entirely unexpected. I have become to know my myeloma and it does tend to respond well to treatment but unfortunately in the past it has shown to come back quite quickly and with an even stronger fighting spirit, but perhaps this time will be different, I do hope so. I will also need to have another MRI scan at sometime to find out how the two masses that were on my spine are behaving. The radiation did a good job on them so I hope they have remained just shrivelled up little spots that are staying put.
I won’t be seeing the consultant today as he wants to wait to have the results of my bone biopsy before discussing with his colleagues the next plan of action. I pray for a miracle to happen and a cure to be found very soon. Meanwhile I have an important job to do and that is to get on with living.

Those that know me well know that I have always been a very positive person dreaming up all sorts of ideas for the future. I am trying very hard to still be that person but I must admit the last three months or so have knocked me for six. I now try to live in the moment and to enjoy the time, whilst physically feeling so much better. I can’t pretend this is always easy and I have so much admiration for those that do this and grab every moment of life living it to the full. Maybe I am expecting too much of myself as it’s still early days yet, being only 3 months since my stem cell transplant, and I still get pretty exhausted fairly quickly. Thinking back I suppose It also didn’t help that I always lived in a bit of a bubble, death was not on my agenda and maybe like many other people, I imagined myself as being immortal. When I received my diagnosis all that suddenly changed and I was forced to face what is the inevitable for us all I am afraid. I watch with great admiration, the courage of fellow Cancer sufferers who face this with such dignity and courage. I pray for a faith that will provide the promise of another place and listen so hard for a reassuring voice that will make it all alright. I won’t dwell anymore on this as I don’t want to depress myself or you dear reader instead I shall concentrate on how lucky I am to be alive today even if I do have to travel up to London for the dreaded biopsy!

We had such a good time away and we will plan many more trips across Europe. This week I have met up with an old friend and colleague and was so excited to find out she was a fellow motorhome owner. We talked about our travels, chasing winter sunshine and the advantages of taking your home along with you. I can’t wait to meet up again.

I have also been pretty busy this week doing some work on another mental health project. This has been a great distraction although much harder work with my rather less able chemo brain. It did help however working on it with Allison and a piece of her delicious cake.

Pollyanna is staying with us at the moment and is great company when we see her. She has started a new job managing the trauma service in Cambridge. She works so hard leaving early, getting home late and then getting back on her laptop and working more. She is so passionate about her job but I reminded her of the importance of a good work life balance. Pot calling the kettle black, Colin quickly pointed out, surely I wasn’t that bad? It is hard when you enjoy your work so much and it still saddens me how mine had to come to such an abrupt end. Still I am still manageing to keep my hand in and as my energy increases who knows what will happen. Oh yes and I still have several books to write. Could that be a bit of my old self coming back?

The sun is shining on our journey down to London as I attempt to tap this out on my iPad whilst not getting car sick. I feel relaxed and happy, writing the blog is very cathartic and I have my soul mate by my side. I shall sign off now so we can chat about a possible trip to Holland and a drive up North to enjoy one Aunty Judy’s delicious Sunday lunches.

But not before leaving you a lovely picture of my grandson who is spending the week away in a caravan by the sea.

Have a great day and take a moment to appreciate the little things around you.

A friendly smile can make all the difference so here are a few just for you…

😃😀😍😉😜😄

Deborah xxx

Writing this blog…

…Is not always easy. When I am too tired I just don’t have the energy to do so.  It has however been very helpful at times and I am proud to say that since starting it I have had over 65,000 views. I have always promised to be honest and open and use it as a way to share my experiences of my health journey and seeing the NHS from the other side, and at times share the knowledge and experience that I have gained in the field of mental health over the last 30 years or so.

Through the blog I have made new friends and caught up with old ones. I have been truly overwhelmed by your support and generosity, this has helped me through many a difficult time and I have never felt alone with you by my side. My audience is varied from family and friends to fellow Myeloma buddies from all over the world. Sometimes knowing that my parents, children, brother, sister, husband and close friends read this has made choosing the words I write quite difficult. Although I have always promised to be honest I am very sensitive to their feeling. I never want to worry or offend, to make people feel even more miserable by sharing my lowest points but I think I usually manage to strike some sort of balance, I do hope so anyway. It is also important for me to talk about mental health, if we are ever going to reduce the stigma that is still around.

So here goes. This last week, I have felt particularly low both physically and mentally. At times I wondered how much more suffering I could take, especially after the five attempts of digging around to find a vein that wouldn’t collapse on Tuesday. I was particularly sad at having to go back into hospital again and it was so hard to watch my husband having to witness my pain. When you are used to being so independent it is difficult to then have to rely on others for even your most basic needs. Physical ill health has a direct link with your mental and emotional well being, so my usual positive self had disappeared and I felt more overwhelmed by sadness than ever before. It pains me to admit it but I started to think that the world may be a better place without me and an end to all this suffering would be a welcome release for everyone. I am sorry to share these thoughts but apparently they are quite normal for someone who has experienced the trauma that my body has been put through. I am pleased to say today I am feeling much more positive and emotionally healthier.

Myeloma is a particularly nasty cancer and everyone’s journey is very different. There is no knowing how long any remission will last or what will happen next. Some people are luckier than others and I have read stories of people being in remission for many years. At my hospital visit yesterday my specialist nurse briefly discussed the likelihood of me having to continue on some sort of chemo maintenance drugs due to the aggressive nature of my myeloma. If it’s what’s going to keep me alive so be it. The good news from yesterday’s visit is that my white blood count and my neutrophils are just in the normal range now so my body should be able to fight it’s own infections once again. My red blood count is still a bit on the low side which probably accounts for some of my tiredness.

I am listening to my body more and may just spend today in bed. I really do need to rest so that the healing can take place. Eating and drinking is still quite a challenge unfortunately due to the constant feelings of nausea. I haven’t however broken my 30+ years record of actually throwing up although I got pretty close to it in hospital.

I really want to thank you all again for your continuos support. You are my strength when I am at my weakest.

Just look at the lovely bracelet Jem bought me on Tuesday, it was so sweet and thoughtful of her.

With all this love around I know that each day I will become physically and emotionally stronger.

I am forever in your debt.

Thank you

Deborah x

What seemed like the last straw..

After having a lovely morning watching my grandson from my prone position on the sofa I started to go down hill and struggled upstairs to bed. I took my temperature and it was 38.4. Anything over 38 means take yourself to your nearest A&E. With low blood counts any infection could potentially be fatel. But I was devastated and fraught with grief at the thought of going back into hospital and all that entails. I rang  the free Myeloma support line and spoke through my tears about my sheer frustration , fear and disappointment. I knew what she would say. That I must call my specialist nurse who I knew would insist I went immediately to my local A&E. After 7 hours of waiting, admittingly on a bed in a side room I was eventually found a side room in the new Acute Medical Unit. There are no Heamotology beds at the Lister. Last time I was here I was put in an elderly care ward so I insisted I would immediately discharge myself if that happened again. Luckily I was given a nice reverse barrier side room. Because the air is kept clean the is an air conditioning  unit just above my bed and I was freezing, despite numerous blankets. Still my temperature has come down and I think I have managed to persuade the consultant to let me home today on the promise I attend my appointment at UCLH tomorrow.

Nothing runs smoothly in the Myeloma theme park. I think I am on a rollar coaster at the moment, the ride is making me feel very sick and I really want it to stop and let me off!

Patience really is a virtue which I think I have missing!!

Deborah x

As slow as a tortoise

Or maybe even slower, that’s how I feel. I suppose it is very early days yet. The last couple of days have been clouded by feelings of nausea despite the four different types of anti sickness tablets I have been taking. Perhaps the antibiotics are to blame? Whatever the reason it has knocked me flat and made me feel pretty miserable. Still you guys certainly know how to cheer a girl up and yesterday I received some lovely paper butterflies that now flutter away around my fire surround.
My lovely little grandson, with a bit of help from Mum, made me this beautiful card, so a I have plenty of reasons to smile.

My strength is quite an issue, honestly I have to build myself up for the walk into the bathroom. Never mind having a bath which takes more energy than  I ever imagined. I have devised a novel way of getting out of the bath now. Once the water has drained away I put a dry towel on the base of the bath that helps me to grip and eventually pull myself up. The whole process does however completely wear me out and I have to spend the rest of the day recuperating. For somebody who was used to having boundless energy this is all pretty frustrating but I suppose I must be patient. We are after all only on day 29 of the SCT and I haven’t been out of hospital long.

At least I am home for which I am very grateful. I am sitting in the conservatory enjoying the view of the open countryside listening to the birds chattering away and I appreciate being alive.

Have a great Friday and a lovely weekend

Deborah xxx

All best plans…

Following a restful and most enjoyable weekend, much of it spent in the garden, yesterday was rather disappointing. Unfortunately I couldn’t ignore the pain in my right arm any longer. The site around my Picc line was tender, hot, red and inflamed. It had become difficult to raise my arm even by a few inches. I knew the Picc line needed to come out. Attempts to get it sorted our locally predictably failed so it was another drive back down to London. Poor Colin, he could do the journey with his eyes shut by now.

The day was long. By the time I saw the doctor, who predicated a clot or infection, had a scan, the Picc line removed and collected all necessary medication, it was almost 6pm. The conclusion was an infection which was my preferred option as taking oral antibiotics beat giving myself daily injections.

Feeling tired and very weary on our return it was lovely to be greeted by this beautiful very unexpected surprise.
A gift from my Uncle Jeremy in Hong Kong. It certainly put a smile back on our faces, as did a visit from my good friend Allison. She had very kindly sourced us a wheelchair to borrow for the next few weeks. She also came armed with a homemade banana cake which was gratefully received by us both.

I think I am slowly getting my appetite back partly helped by the delicious, tender fillet steaks kindly bought for us by my brother on Saturday and thoroughly enjoyed for lunch on a Sunday. My taste buds aren’t quite the same yet but I don’t think it will take too long to regain all the weight I lost.

So here I am home again lying in m own comfy bed. I can’t explain how grateful I am for that. Today I may attempt a long soak in the bath. Getting in is no trouble but finding the confidence and strength to pull myself out is a bit more tricky.

It looks like the sun is shining so hopefully I will spend the rest of the day in the garden. If all I feel is my general fatigue today I will count my blessings.

Very slowly my strength will return. I have been warned not to expect too much too soon. Perhaps with my new found strength I will grow back some thick glossy, shiny, locks, preferably not the grey variety.

I’m so happy to be alive.

Thank you God, the Universe and most importantly YOU.

Deborah x

I am home….

….and I couldn’t feel more relieved. We arrived back at about 6pm yesterday and I got through my first challenge of climbing the stairs. Knowing my lovely comfortable bed was ready and waiting allowed me to draw on all my energy for that final push to reach it. I had the best nights sleep for weeks., with no rising temperature. And I even managed to have a bath this morning. How happy am I? I may as well have won the lottery.l

Lying here in bed I feel fine. The hardest thing is the pure exhaustion. It may sound pretty crazy but even pulling myself up in the bed can feel exhausting. My muscles seem fine though so I expect with a bit more fuel inside me it won’t be long before I’m able to do much more. I shall try a little more every day.

it feels quite odd to have no appetite whatsoever. There is nothing I really fancy so you could sit next to me with my previous favourite foods and I still wouldn’t be tempted. Apparently the large dose of mother of all chemo’s, kills of the hunger signal to your brain. So I am just pushing myself so eat and drnk little and often. Even my three little soldiers of marmite on toast makes a difference.

I just want to take a moment to reflect on the excellent care that I recieved during my 24 day stay at UCLH. The nursing care in particular was exceptional. Whether it was my Specialist Stem Celll Transplant nurse, the highly skilled nurses that cared for me on ward T16, or those that carried out the transplant in Ambulatory care.  They were so caring, thoughtful and kind. Laura even insisted on making sure I was safely tucked up in the car for the journey home, all in her own time.

The doctors were also amazing, I felt like I was holistically cared for, listened to, and that each decision was carefully explained to both Colin and I.

Whilst in hospital I also had visits from the holistic therapists, counsellor, physio’s and occupational health. All came to spend time with me and to ensure my journey was made as manageable as possible. Even the cleaners and catering staff did their best to chivvy me along.

My room was decorated with cards and gifts and I was constantly reminded of all your support in helping me along. I am not sure I would have come this far without you. I read every card, text, comment, Facebook message etc and each one felt like a guiding hand towards recovery.

On arrival home yesterday I was greeted by welcome home messages and today another thoughtful card arrived in the post and bunches of roses seemed to magically appear at our back door. It makes me think I must have done something good to deserve so much love and generosity of spirit.

All this time I have had my rock to lean on, quietly and without a murmur of complaint supporting me through some very difficult days and nights, fetching and carrying for me and emotionally lifting my spirits. Thank you to my dearest husband.

Sending you all the warmest and most heartfelt thanks

Love Deborah xxxx

July 31- Day 21

This is what three weeks in hospital can do for you.

I certainly look a bit thinner. Dare I say it, but maybe just maybe I am a little brighter this morning. Not that the night was without its drama’s but I really don’t want to put you off your cornflakes.

Today Colin gets to escape this prison cell and our good friend Sue gets to take on the role as nurse maid. Hopefully I will just suffer from extreme exhaustion today. This morning my temperature is for the first time in weeks, 36 something. Let’s hope is stays that way, if I am to stand any chance of seeing our home again.

Please let my corner be well and truly turned!

Thanks for hanging in there with me and for all your lovely comments, they really do make a difference.

Love to you all

Deborah xxxx

July 29th/30th – Day 19/20

Hot and bothered. Very little change if any. Today I have a PET and CAT scan to investigate further. Only clear fluids from now until appointment at 2.30. It says to allow up to 4 hours for the whole procedure. Oh well let’s hope they find something they can then treat.

That’s as much as I can manage today.

Deborah x

July 28th – Day 18

There seems to be very little let up but I suppose the fact I am even writing this blog must count for some improvement. Both Colin and I are really fed up now and there have been some tears today.it is hard to see an end to all this but my fellow myeloma buddies give me hope, having been through this hell and come out the other side. My body aches all over, the bed is far from comfy and as much as I try to sleep when I can it isn’t easy.

Sorry this post is full of gloom, perhaps the sun will come out tomorrow.

Deborah x

P.S. there is a little joy, everyday mum sends me a card and a lottery ticket, today it won a £1.00!