Day 55 and the journey continues.

Today I was looking back at some old blog posts from this time last year, when we were enjoying some French sunshine. It did bring back some lovely memories and showed both Colin and I really enjoying and living life to the full. That seems to be something that has been rather lacking over the last six months as I have allowed myeloma to get the better of me. I am not going to beat myself up about it though as when one is physically so poorly it really does take a big toll on your mental wellbeing. Along with the physical ill health comes plenty of anxiety which in turn does no good for the healing process. As those of you who know me well will appreciate, I am probably one of the most optimistic dreamers around, always playing the glad game made so famous in the film Pollyanna. In fact only my lovely daughter Pollyanna is better at playing the game. I have however, had to learn a new skill recently and that is living in the moment, the here and now, instead of drifting off into some sort of fantasy land and dreaming up all sorts of crazy plans. I am not knocking that though as it has worked very well for me in the past so I am not about to give up on visualising altogether. I am just learning to appreciate the moment more. I have become some what nervous about planning too far ahead though for the fear of being let down again, but I think as my health continues to improve this may become less of a problem.

We have been out in the motorhome a few times over the last few days. Colin wanted to visit Houghton Mill in Cambridgeshire on Monday, so we made good use of our National Trust membership cards. I didn’t go in as I wouldn’t have managed any further than the ground floor but I was quite happy relaxing in the motorhome. Yesterday we popped over to Dunelm to buy a little lap table and we stopped off at the BMW garage to try out sitting in one of their new cars. Although our little car has not let us down over the last few years of ownership, it has never been very comfortable. I have just applied for the higher rate of disability allowance which if I am successful, will allow us to rent a car through the mobility scheme, so any tips on the most comfortable cars would be much appreciated.

Tomorrow I am off to the Cancer Hair Care charity to get some tips on tying my scarves and a bit of much appreciated pampering. I am still very hairless with no sign yet of any new growth, so not sure how long that will take to come back. Being bald is very liberating and I don’t mind it too much, especially if I feel strong enough to put on a bit of make up, but I don’t like to frighten other people too much and I do get some funny looks if I go out without a hat or scarf. Maybe I need to find out my old wig again. I also hope to see little Elliot sometime tomorrow. Then if the weather is good on Friday and over the weekend we may take another trip out in the motorhome with our good friends and fellow motorhomer’s.

My strength is coming back but it’s an extremely slow process. I have just realised the time and I am still lying here in bed! I have however managed a bath which does seem to take an enormous amount of energy nowadays.

Well today I am appreciating being at home. I am not in hospital, I have no temperature or infections and even after a full English breakfast I have no feelings of nausea, how good is that!

Onwards and upwards my friends. I feel our arms are metaphorically linked and you are holding me up and guiding me along. Your are my strength.

With much love and gratitude.

Deborah x

Day 49 and things are improving.

Each day I become a little stronger. This has been really helped by not having the constant feelings of nausea and vomiting. I am now managing to eat a proper meal at lunchtime which is helping me regain some energy. I even managed a trip to Ikea on Tuesday which shows just how far I have come. I did find it rather frustrating though, being pushed around in a wheelchair and not being able to flit from one thing to another. Poor mum and Colin were very patient with me as I was rather grumpy to say the least!

Yesterday we had Elliot for a few hours, he was so well behaved and a joy to have around.

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Not only that it was great to see my sister again yesterday, she has come home for a few days visit and to give Colin some relief from his usual caring duties. I expect he will get outside and start polishing the motorhome again. Hopefully it won’t be too long before we can go away for a couple of days.

Today is a pretty sad day as I woke up to the news of a virtual friend and fellow Myeloma buddies death. Also the sudden change in another fellow myeloma buddy whose health has taken a turn for the very worse, and he is only 43 years old. It does make me realise how I need to take each moment of life and embrace it as much as I can.

So today I shall enjoy Kate’s company and try to give my legs a bit of exercise without over doing it. I am trying to sort out my spare room so that I can start taking up a few hobbies again although I have a feeling Pollyanna may be taking over the space and coming to stay a bit more often when she starts her new job in Cambridge.

I am hoping to make some bits of jewellery that a I can sell to raise money for Myeloma research. Another new myeloma friend has started making some inspirational wristbands but shipping them over to the UK is quite expensive. The trouble is all the best jewellery making supplies seem to be abroad which is pretty annoying, but I shall keep looking.
Here is the link for his wristbands that have given me the inspiration.

https://www.etsy.com/listing/200277679/insperational-wristband?ref=listing-shop-header-1

At day 49 I have come a long way and am so much better than even a week ago, so everything is going in the right direction, but I don’t take anything for granted these days.

Thank you again for remaining by my side, you are my strength.

Have a great day wherever in the world you may be.

Deborah xxxxx

 

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

Day 40 – Aug 19th 2014

I would like to report on my improvement but I am afraid I can’t do that just yet. The worse thing is the dreadful feelings of nausea which is much worse in the afternoon and I have actually been physically sick on the last three evenings. I seem to have tried all I can think of from the 4 different medications prescribed to ginger in various forma, mint tea, mint sweets, Rennies, Gaviscon and pressure point wrist bands. If any one has any other ideas I would be most grateful.

It is very hard to eat or drink much when you feel so sick. Yesterday I managed a small bowl of ready brek but that was it for the day. Today I have had some Rice Krispies with a few strawberries and some mint tea. Colin is going to cook some lamb chops for lunch so I will try my hardest to eat some otherwise I will fade away. I have become quite anxious about eating, never mind the fact I don’t fancy anything, because of how bad I feel in the evening, but it can’t help having all my medication sitting in an empty stomach.

Other than feeling sick I have become even more weak but today I will make some effort to get out of bed and spend some time downstairs.

Mentally despite all of this I am keeping depression at bay. Of course I am not happy with the situation but I am looking forward to a healthier future. At the moment however, I would settle for a day without nausea.

The palliative care nurse is coming out to see me on Wednesday morning and hopefully she may have some more ideas.

Sorry not to have been able to bring you more encouraging news but I suppose it’s still early days yet.

Deborah x

I spoke too soon

After boasting yesterday about my 30+ year record of not actually being sick, my record was well and truly broken. So much for all those anti sickness drugs! Still it wasn’t as bad as I feared, although I am in no hurry to repeat the performance.

I think today I shall just have yet another day of rest. Surprise, surprise!

Thank you for all your lovely comments yesterday.

Have a great weekend

Deborah x

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.
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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

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