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

Day 33 and I need to be kind to myself

I think I have been expecting too much, I just so want to feel better and able to at least get up and walk around the garden. I must just listen to my body that needs to rest after the trauma it has been through. From what I have heard and read  I am  probably a third of the way there. By day 90 I should be able to do much more and hopefully I won’t feel so nauseous. So patient I must be .

Yesterday  my day was cheered up by a visit from a friend and fellow myeloma sufferer. It was good to be reassured that all I was experiencing was very normal and as expected. Jet is a great inspiration to me as she takes life with both hands and gets the most out of every day. But she also rests when her body tells her to . It was great to be reassured that I will feel stronger and be able to do so much more in a few months time.

So most of my days are pretty slow.  If I have a bath that’s me done in for. Although at the moment I am enjoying some long soaks with the help of Epson salts, thanks to Jo and Lorna.

It is good to get visitors so if you are infection free and fancy popping around for a cuppa,  you will be most welcome.

On Thursday we are back down to the hospital which will be a good chance to get my latest blood results and check everything is going in the right direction. Fingers crossed all will be well.

Today my daughter and grandson will be popping in , it’s just a shame that I can’t get up and play with Elliot but that time will come and he is very good and seems to understand,

Have a good day and thank you for your continuous words of support, I know I am not alone and I will get through this time.

Deborah xxx

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.

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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.
imageA 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

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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

Aug 1 – Day 22

Dare I say it, or even whisper it? But I may just be let out of here tomorrow. Over the last 24 hrs my temperature has shown signs of settling down. All is going in the right direction. Now my next challenge will be climbing the stairs back home. My energy levels are zilch although I have tried to walk a little each day.

The other little problem is my appetite. I must have lost over a stone but I have no desire for food, in fact the thought of anything makes me feel quite sick.

Still, I just can’t wait to sleep in my own bed, many more nights here and I will be getting bed sores.

So fingers tightly crossed

Deborah xxx

P.S….it’s confirmed today I get to go home.

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July 31- Day 21

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

July 26/27 – Days 16/17

Running a little bit behind as far as blogs are concerned, this one is in fact being written by my sister Kate as dictated by me. This is an indication of how rough I’m feeling at the moment.

On day 16 my temperature reached the dizzy heights of 39.8. If it wasn’t for the temperature I would be feeling much better right now.

This feels like a hurricane more than any old storm. Anyway I just wanted to let you know where I am, hopefully tomorrow I’ll be up to writing more.

Deborah xxx

 

July 25th – Day 15

Have I really been in here that long? If you count my spell in the Cotton Rooms I have actually been away from home for 17  days. I think it’s about time I went home, but the consultant thinks differently and I think he is probably right. There are a few niggles that need sorting out, the first one of these being my spiking temperature.

I have just been seen by the dietician. She is encouraging me to eat and drink anything I fancy, the higher the calories the better. That would usually be music to my ears but my appetite has completely disappeared. Still I have to force down what I can if I am to stand any chance of getting out of here.

I do miss home and my little village. Yesterday I received a lovey parcel of goodies which should entice me to eat something. Thank you Patrick, Annette, Gerald and Audrey, your kind thoughts are much appreciated.

View from our back door.

View from our back door.

My room is also smelling even sweeter thanks to the lovely rose scented bag from Lorraine. I can almost imagine sitting in the garden.

I need somehow to get some energy from somewhere, honestly just a trip to the bathroom seems to warrant another sleep at the moment.

Talking about feeling tired, I think this is as much I can manage right now.

Stay well

Deborah xxxxx