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

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

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

Back in the Cotton Rooms.

After a short spell at home we are are back here again. I shouldn’t complain as we do have a lovely room but it’s just not home. The blood test they did yesterday showed that I was already ‘flat neutropenic’ meaning my white blood count is very low or at zero. During this time as I have no defence mechanisms  I am likely to pick up infections. This is why I am here being closely monitored. As soon as my temperature rises or there are any other signs of an infection I will be transferred to a hospital bed.
I was really quite poorly last week with horrible abdominal pains. Betty’s marmalade on toast with Cheshire cheese cheered me up as did these lovely flowers from my brother.

Although I didn’t get out of bed for three days, when I did sit out in the garden it was lovely to see how the place had changed. I just wish I had the energy to do some weeding, although that is not encouraged when your immune system is low because of the risk of picking up an infection from the earth. Thank you to mum who planted three courgette plants and just look at this lovely clematis.

Hopefully my numbers will start to rise again soon, I am keeping my fingers crossed for being home by the weekend.

Have a good day

Deborah x

Here we go again

First of all I must apologise for all the emails, texts, cards and visits I have not responded to. I have been completely overwhelmed by fatigue and feelings of nausea. Both Colin and I have also been emotionally drained.

I know its OK not to feel positive all of the time and the reality of the situation would get even the strongest of people down but it is so unlike me. I am however allowing myself a few days off to rest and feel a little sorry for myself.

On Monday I heard that I have to go through the whole process again. That means another round of DT-PACE before going on to the stem cell transplant a couple of weeks after that.  My consultant said I had got off lightly after the first round which concerns me a little. I don’t consider having to stay in hospital for 8 days and have two blood transfusions and a transfusion of platelets as getting off lightly!

I think I am now experiencing the side effects of the radiation which continues to work for several weeks after the treatment has finished. I am hoping that is what is making me feel so poorly at the moment and it will soon pass.

Please don’t think of me as rude for not getting in touch or replying as quickly as I may have done in the past.  I am very grateful for all your good wishes, thoughts cards and gifts. Only yesterday I received this lovely thoughtful gift in the post from a new friend who herself has her own health problems to cope with.

It was lovely to catch up with my nephew who lives in LA last Sunday but a shame my lovely grandson couldn’t join us as he was unwell and I still have to be so careful not to pick any infections up. I haven’t seen Elliot for so long now but I really hope to catch up with him before going through the next round of treatment which starts next Wednesday.
Here is a picture of me and Sebastian together and of us all at Kate’s house for lunch.


I must admit I was feeling better then, than I have done for the past few days.

Mum is on holiday in Greece at the moment but we have had daily contact through the marvel of FaceTime although only for a few minutes at a time as I have just been too exhausted to even talk.

Oh well each day I am feeling a bit stronger. I have also entered so many competitions now that very soon I am sure I will receive that winning letter through the post.

I plan to rest up over the weekend but I am looking forward to a trip to Hobbycraft on Monday. I feel very honoured to have been asked to make a tiara for a good friends daughter. This will give me something to focus on whilst I am in the Cotton Rooms again and will be a joy to do. I made one for her mum on her wedding day so it is pretty exciting to be doing the same for her daughter.

So like I said I have allowed myself a few days off to rest and I am now keeping a fluid chart to ensure I get somewhere near the 3 litres a day I have been recommended to drink. Eating hasn’t been quite so easy though as I have been feeling so sick but I am hoping I may be able to manage something today.

If anyone local fancies doing my nails I would be grateful as I don’t think I have the energy to do them myself and it does make me feel so much better to have a little sparkle. Which reminds me I am still waiting for all my exciting jewellery to arrive from Amazon. I have so far received my daisy necklace and earrings but you never know what the postman will bring today. I am feeling better already just thinking about it.

So Thank You once again for all your support and kindness.

All my love

Deborah x

 

 

And the excitement continues…

Yesterday I finally had my blood transfusion. Two bags of B positive. It made me wonder what kind person donated it and it felt kind of wiered knowing I had someone else’s blood in my body. Still I was grateful as my HB levels had dropped to 76. The nurse told me I should feel more perky but I am not sure I do. My back pain has returned which doesn’t help much and my temperature continue’s to go up and down. But still I remain pretty cheerful.

Yesterday was full of treats and surprises. First of all we received another order for a BrainBox resource pack, I think that’s 112 sold so far. We need to get our website finished so we can market it better. I then received in the post to the hospital here, some printed copies of the first four booklets we have designed for Step2. I think they look pretty good even if I do say so myself.

The next bit of excitement came by post. A lovely box of chocolates and card from the very thoughtful Patrick and Annette. Thank you so much x

And then if that wasn’t enough a box of all kinds of treats, picked out by my lovely sister and mum, including some rather sparkly nail varnish. So last night was spent painting my toe and finger nails.

Colin went home for the day yesterday. He was able to mow part of the lawn before the blade flew off. He then saw his mum to give her a birthday present which I think she was delighted with. I must admit I did miss him but it was good for him to have a break away from this place.

Not sure what today holds. Hopefully the new anti biotic I started yesterday will be working and my temperature will stay consistently low. Other than that I shall just have to wait and see what the doctors have planned next.

Have a good day

Deborah x

So far so good.

All is going well so far, all being helped by being so well looked after here at UCLH.
We have a lovely room and just wander across to Ambulatory care for 9am to receive my treatment.

 

It took a few hours for the drugs to be delivered via my pic line and I was then given my bum bag to deliver one on my drugs over the next four days. This is permanently attached to me. I was wondering how I was going to sleep with it on. It wasn’t too bad but the alarm did go off a few times in the night reporting an occlusion when I must have lay upon the tube.

After my treatment yesterday we took the bus to Selfridges to have a look around. I bought a pair of trousers and top there which is quite surprising considering the place is so expensive. My things came from the Primark stand within the store so were under £20 but received the Selfridges service of a nice bag and everything wrapped up in tissue paper. We also bought some very over rated food which we concluded was no better than we could have bought at Sainsbury’s for a quarter of the price.

It was lovely to see Polly who popped in last night and I received some post which was very exciting. Today we may visit a museum depending how tired I am feeling after this mornings treatment. Until then I am going to see how I am to negotiate a bath with this thing attached to me, it may be somewhat of a challenge!

Have a good day lovely people.

Deborah x

So here goes…

On Friday I had a call from my specialist Myeloma nurse and found out that I have what they call Nonsecretory Myeloma. Apparently this is a topic shrouded in apprehension and mystery, according to the Myeloma Beacon site. Less than 5% of all patients with multiple myeloma have nonsecretory myeloma. Trust me to get that one! This form of the disease cannot be diagnosed or tracked by the presence of monoclonal (M) protein in the blood and urine or immunofixation studies; however, it can be detected in the bone marrow or upon biopsy of bone lesions. Patients with nonsecretory multiple myeloma are treated the same way as other patients with multiple myeloma with most having the stem cell transplant, that I am in leading up to in a few weeks time. It appears that the prognosis is about the same, however, patients with nonsecretory myeloma are less likely to have myeloma-related kidney damage, which is to be a bonus.

It will all kick off on tomorrow (Tuesday) with another bone biopsy which I reminded my nurse that I WOULD require sedation for. I don’t know why they consider giving it without as it really is pretty painful, having had two without and three with I know the difference. I will then be given a Pic line. Through this I will receive four different chemo regimes daily including apparently getting a little back pack that will continuously deliver one of the chemo drugs throughout the day and night for the four day cycle. I have my room booked into the NHS hotel with a hospital bed on standby if the need arises. I will apparently be able to walk about outside but I need to stay close to the hospital and a trip to Selfridges is out of the question, which is a bit disappointing. I need to stay pretty close by as they have to closely monitor the effects of the drugs to my healthy organs and cells and keep a close eye out for infections as my blood counts drop and I start to become neutropenic due to the loss of my white blood cells. This is a period of time when I am most susceptible to infection and do need to avoid catching anything if I am to prevent ending up in hospital.

All being well I should be home by Sunday. Depending on the outcome of all this I will either need to go through the whole cycle again or have a couple of weeks recovery before going back into hospital for the stem cell transplant. I have previously tolerated my treatment pretty well although I do hope I don’t develop the painful neuropathy again. My hair will fall out at sometime but I can cope with that. I am not looking forward to losing my taste buds again though.

Both Colin and I are a little apprehensive but we are both very confident in the medical team and know we are in the best of care.

I expect it will be a pretty boring week really but I have my knitting and my competition magazine to keep me busy. And of course I have all my technology as long as I don’t go near a washing machine today!

If any one does want to contact me I am on Facebook, you can do so through this blog, most of you have my email address or phone number or I can be reached via the Cotton Rooms at:

Cotton Rooms
1 University Street
London
WC1E 6AQ
Telephone: 020 7380 0030

I shall keep you posted as to how things go.

Enjoy your week remain positive and take some time to appreciate the many beautiful things in the world around you.

Deborah x