It’s all pretty confusing.

I am also rather fatigued and pumped up on a numerous regime of tablets. I am very very disappointed that here I lay in bed with the little energy I hoped for. I will try and get dressed however  and sit down stairs for a short while today.

It was great  to see so many friends, family and colleagues in hospital. They have all been  so hopeful and positive and bearing such lovely gifts.

i am hoping the new drug regime will do the job. One of them has got to work.

We were very frustrated that my chemo drugs were left behind at UCLH, after such a long wait on Friday and poor Colin had to go back down to London the next day and collect  them, meaning I missed a dose of my Revlamid. Nevertheless these things happen.

i received a lovely taster box of chocolates from Aunty Mo this week and some steak and lamb chops from my brother and family which was very tasty. Plus shopping and cleaning from mum and friends, Sue and Angela, so I am really being quite spoilt.

it also seems I will be getting some pretty Christmas lights from Toby, although Colin is rather embarrassed that mum has asked some lovely villages to help put them up as its not an easy job!!

We are just needing to take it easy at the moment, so there may be not much blog writing for a while.

Love to you all

Deborah xxx

 

This is not an easy post to write….

especially as I want to be sensitive to my readers, all those family and friends I love.

..On July 10th, as many of you know, and helped to see me through the process, I had my first auto stem cell transplant, and on October 27th I got the all clear. No Cancer showing in my blood or bones. I was in remission. Hip Hip Hooray. I have heard that remission can last from about a year to 17 years! Being the dreamer I was counting on the 17, plenty of time for that elusive cure to be found.

On that same date of Oct 27, 2014, I was spiking a temperature and developing a cough, I started on some antibiotics and was told to go to my local A&E if things didn’t improve. I was admitted straight away  to the Lister Hospital. which you have probably already read about on my previous blog, but to recap the medical and nursing care was human, caring and professional, I couldn’t ask for more empathy and involvement in my care. Thank You.

@enherts

The Lister ran every test possible into my respiritoy problems and more, but many more questions were produced than answers. So it was agreed by all to transfer me to UCLH on Nov 7th.
I am back on T16, bed 20, where I had my original transplant.
It was good to see old friendly faces, and Colin is able to stay with me here.

They immediately started running more myeloma related tests and our biggest fears were revealed. After only just hearing we were in for a nice long remission (or so we hoped), my blood and another bone biopsy showed the Cancer was back with an a vengeance. The doctors were as shocked as we were. The bad news is no more stem cell transpnts for me. There are however a couple of drugs and maybe some trials available but it’s all a bit hit and miss

Without sounding too melodramatic we are emotional drained and devastated, but we will pick our selves up. It was good to have mum and Kate here to hear the news and support us but we are sure it’s equally as difficulty for them to hear,  Even the doctors and nurses hugged me tightly and said how sorry they were. Many of them have been on the journey with us and nurse Kate even delivered my new Stem Cells, wishing me happy birthday 😢

So what’s next? A new regime of continuous chemo will be worked out with all its delightful side effects and no doubt a ban on various Chistmas tipples! My temperature seems to be settling, so once a few more tests are carried out and my meds are sorted I may be home by Thursday and get a drive in my new car. Although now being put onto a load of strong drugs, I doubt I will be actually be able to drive it my self.

I know with all your help I will find a way through this. I need you more than ever now.

Love you all

Deborah xxx😕👼👸😻👪💏🙋❤️💗💎😕😷☺️🐾🌻🌞☀️🌈🌠🌏🌎💐🌸🌷

The last ten days..

…have been pretty rough going, bringing up more questions than answers. I am thoroughly exhausted by it all. Each day I hope for a little more strength but instead feel weaker.

But Thank you for all your kind messages, emails and thoughts, I will get back to replying to them all when I feel stronger. But just to say they are much appreciated

I had a Brochoscopy on Tues. Not the most pleasant of experiences but it was helped along with a complimentary therapist, for which I was most grateful.

The ward is lovely but I miss my opposite bed buddy who was always smiling. I can’t fault the nursing staff always vey kind, caring and professional here on 11a South.

Sadly I can’t see Jem or Elliot under these circumstances, but the when visitors do come I feel pretty exhausted very quickly. Still it’s good to see people and breaks up the day.

Not a lot goes on here but at least I have a good view of the nurses station which is better than a blank wall.

So why am I still here? Through all the various tests, blood cultures, scans act they can not find the route of the infection. But my temperature is regularly rising to 39.5 (103f in old language) this is what really pulls me down, I can cope with the coughing fits!

If things don’t improve in the next couple of days I will be transferred by ambulance to UCLH. Here they will carry out a PET scan, probably the only scan I haven’t had. It involves a pretty high dose of radiation and can pick up on all sorts of things even dementia!

I just really want to get home and be with my husband.

I shall just have to continue once again to be a patient patient.

From my window on the 11th floor it looks like you have had some good days, but perhaps we are now starting to enter winter.

Oh well soon I will get a ride in my new car, that’s something to look forward to.

Love to you all

Deborah xxxx

Day 43 – A bit nervous about speaking out too soon but…..

…I think the feeling of nausea may have almost gone or at least been drastically reduced. On Wednesday I had a home visit from Louise, my lovely Palliative Care Nurse. She listened and then looked carefully at all my medication. Embarrassingly, I threw up whilst she was there. Louise was determined that we would get on top of the sickness. After a discussion with my specialist myeloma nurse and the hospice doctor, Louise rang back in the afternoon with a new medication regime. I was to try taking Levomepromizine 6mg x1, and 1mg of Lorazepam under the tongue at night. Well it seemed to do the trick and knocked me out for the whole night. So yesterday (Thursday) was a much better day. I was able to eat and drink small amounts and felt much brighter in mood. It made such a difference. I still feel mildly nauseous but nothing like I did and I can take up to 4mg of Lorazepam during the day so I always have that as a back up.

I made it downstairs yesterday and with Colin’s help I managed a short stroll around the garden. Today I may go for a drive out in the motorhome. I must however be careful not to over do it. My body is still very week and I can’t do very much before I am completely exhausted. Thank goodness for the wheelchair borrowed from the Red Cross.

Yesterday I had a lovely visit from my old friend and colleague Jane. It is all very exciting as she is moving to Guernsey next week to start a new job. I shall really miss her but both Colin and I are excited to follow her journey and we hope to visit her out there sometime. Jane is one of the most generous and genuinely thoughtful people I know. It wasn’t until she left that we found the bags of Waitrose treats that she had left behind for us. All kindly hand picked tasty morsels aimed at trying to encourage my appetite. But it’s not just her generous gifts it’s her thoughtful words and kind gestures that make her so special. Both Colin and I will really miss her but are so excited about the adventures she has ahead.

I must also acknowledge all the hard work and kindness my mum shows. Nothing is too much trouble for her and she does all our shopping and ironing at the moment. Anything she can think of to make our lives easier she does. Last week she bought all sorts of natural remedies to try to reduce my nausea, from specially scented candles, Joss sticks, mints and herbal teas.

I am very lucky to have such a caring family and good friends.

Perhaps I have turned a corner? Oh please do let that be so. I feel that HOPE and my positive outlook is returning.

Thank you all for your continuous support and comments. They really do make the difference.

Now I have some competition entries to post. Fingers crossed I could be winning all matter of crazy prizes.

Have a great Bank Holiday weekend my Guardian Angels

Deborah xxxxxx

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

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

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

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.

 

 

 

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