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.
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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.
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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

 

 

It feels so good…

..to be home. after 8 nights in the hospital it was great to sleep in my own bed again last night. I am feeling a little weary and I am finding it hard to eat or drink much without feeling sick but I think this is just the side effects of the radiation. Apparently the radiation continues to work for some weeks after treatment has been completed. It has done a good job so far shrinking the two masses that had wrapped themselves around my spine. One was apparently pressing on a nerve so no wonder I was in so much pain.

I saw the consultant before I left the hospital. He said I had got off lightly and had expected me to be a lot worse than I was. My temperature kept going up to 39 and I was feeling pretty rough so not sure how bad it could really get? On Monday they will have a meeting to discuss the next steps. I will either be put through the same regime again or go straight into the stem cell transplant. I really hope it’s the latter as I don”t fancy another round of such intense chemo. I do think however, they are more likely to put me through another cycle of DT-PACE, which is the name they give to this intense chemotherapy treatment, as reading more about it most people do have 2 cycles. That means more steroids and another fat face! I shall be pleased once the whole lot is over and I can start to recover. One thing is for sure there will be no visiting Bordeaux to watch the marathon in September. I shall just have to dream of a special week away some time later in the year.

I am very excited about catching up with my lovely nephew today. He is in England for just a couple of days as he now manages Leona Lewis and she is over to sing at the FA cup final. I will be able to show him my glamorous Hollywood bathroom that he kindly made possible. So the family is coming together for lunch at Kate’s house. Unfortunately mum won’t be joining us as she is on holiday in Greece. But I will get to see both girls unfortunately my lovely grandson was sick last night so sadly I won’t get to see him today.

I have been showered by gifts and cards and feel thoroughly spoilt. My aunty and uncle sent me some money so I had some fun shopping online from my hospital bed and little treats keep on arriving through the post. It’s very exciting as I had forgotten exactly what I had ordered and yesterday morning I received two lovely necklaces and two pairs of earrings. It’s no fun having cancer but the kindness people have showed really does cheer me up. I have had some lovely cards with such thoughtful words. All of which are much appreciated. I have also entered lots of competition so I am awaiting that winning letter to arrive at any moment.

Here is a lovely picture of Pollyanna today and one of all my lovely cards.

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Have a good Sunday

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.

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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.
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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

Admitted to the ward

I arrived at Ambulatory Care on Thursday as Colin checked into the NHS hotel. Unfortunately I had a temperature so I had to be admitted to the ward. It’s not quite the same as staying in the hotel room with all it’s comforts but I do have a large room here with a bed that Colin can sleep on.

My temperature goes up and down but is up again this morning. I have an infection and I am now Neutropenic. This morning I will have the blood transfusion of platelets, as my platelet count is low. My white blood cell count is low too so I am open to picking anything up.

Hopefully the anti biotics which I have been having pumped into me since Thursday will start to bring the infection down soon. I have an upset tummy and a rather nasty mouth infection but beside that I am in good spirits .

I was especially cheered up by this lovely card that arrived at the Cotton Rooms yesterday.

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Thank You so much Sharon, Tony and girls. I have had a few lovely cards recently and I do so love getting post. I have entered so many competitions lately that I am just waiting for my prize winning letter to come in the post now.

At least it’s not so boring here on the ward as there is always someone popping in to do something. I shall be staying on the ward now until I am well enough to be discharged home, which I hope won’t be too long. The doctors reckon I will be here for about a week but it will depend on how quickly they can bring this infection down.

The most annoying thing is you have to pay for the TV and it costs about £10/ day which I think is pretty expensive if you are here for a week. Of Course all this was free in the Cotton Rooms. And there is no lovely breakfast here just soggy toast! Not that I feel like eating much anyway, but poor Colin misses out.

Like I said I am in good spirits which is the main thing. Keeping my mental health in check will help my physical body to repair.

Last night I was able to enjoy news via Twitter, from the Nursing Standard Awards. It brought back some very happy memories. It was lovely to see pictures from the event held in the Savoy hotel. I was especially delighted to see school nursing being recognised. I hope our teams in Hertfordshire will think about being nominated next year.

I think I shall get on with writing some more of my Children’s Mental Health book for parents, today.

Have a good weekend

Deborah x

Quick update

All is going well so far just feeling a bit more tired and definitely losing my taste buds.
I should be home on Sunday but I need to be very cautious, so no visitors for a while as I must avoid any chance of infection. I have to return to hospital for bloods on Thursday and they want me booked into here at the Cotton a Rooms for 10 days. The reason for this is that I am over 40 min from the hospital and if I get a temperature that is too much of a risk apparently as I need treatment ASAP to avoid serious consequences. They are very cautious here which must be a good thing I suppose. It will then be decided if I will go through another cycle of treatment like this or straight into transplant. They will probably do another biopsy and MRI scans to hunt for any cancer markers. My body needs to be cancer free prior to my stem cells, which are on ice, are re-introduced.

It’s all a bit boring and we will be pleased to get home on Sunday even if it is just for a few days.

It’s costing us a fortune on food here in London. Yesterday we made a big mistake. We thought we would treat ourselves to a nice lunch out. We fould a little French Bistro. It cost us £50 and certainly wasn’t worth it. A tiny plate, of 6 oven chips, 5 inches of horrible steak (with a teaspoon of ju) and one bit of carrot. We felt as if we had been mugged and will be sticking to our Sainsburys ready meals from now on. We do get provided with a lovely breakfast so we can fill up on that in the morning.

The sun is shining here.

I hope it’s as lovely weather where you are.

Happy Weekend

Deborah xxx

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.
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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!

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Have a good day lovely people.

Deborah x

What a day!

 

Before recapping on yesterday’s events. I thought I was just do a little reminder summary of how I came to be here and the reason’s I decided to put pen to paper, or rather finger to screen, and tap out this blog on a fairly regular basis. In 2009, a blood test revealed an anomaly. This small change lead to a diagnosis of MGUS that required yearly monitoring. Unaware of the seriousness of this at the time, I just carried out life as normal, working in a job I loved and being grateful for the life I lived. By 2011 the indicators in my blood, which I have since learnt are cancer markers for Myeloma had increased enough to warrant 3 monthly hospital visits and further investigations. Time then seemed to move on a little quicker and no sooner had I been taken under the watchful eye of the experts at the a University College Hospital London, the cancer blood cells had grown to such an extent, that in 2013! I received the life shattering news that I has developed full blown Myeloma.

Two pretty intense cycles of drug trials, and my body seems to be continuing to produce these unwanted cells, that are not responding as well as they should to the new novel drugs. In the last week or so I experienced severe back pain, that highlighted a soft tissue mass compressing on my spine. This required a weeks stay in hospital and five sessions of radiotherapy, the last of these to take place on Tuesday.

Writing about my experiences has been very cathartic. It has helped me to try to make sense of the events as they happen. Having worked for so many years in the health service, I also saw it as an opportunity to share my experiences of the NHS from the other side. I soon realised that I enjoyed the writing process, and many people commented on how they enjoyed reading my regular rambles. I have always try to be honest, and aware of my audience which ranges from family, friends and fellow Myeloma suffer’s to those working in the NHS or with a particular interest in mental health issues.

For me, the blog gives me the chance to reflect on recent events and share news of my progress and battle with this disease. It gives me the opportunity to share some of the knowledge and skills that I have developed over the years working in Adult and Children’s mental health and share my experiences of being a patient in the NHS system. But I get so much more out of this blog than a I had ever imagined. Knowing I am not alone has made such a difference. Through your comments on here, via Facebook, through emails, post and home visits you have and continue to support me, giving me the strength to keep a positive state of mind and get through this hopefully coming out the other end in one piece.

So back to yesterday! I must admit I woke up pretty cheery, the radiation has been easy going, the sun was shining and Colin and I were ready for the last drive to London for the week. Then to be blunt, the shit hit the fan. Now those who know me well, know how I treasure my technology.

This week my computer had packed up and I was feeling pretty frustrated as to how I could get on with the commissioned work we were due to deliver. Apple has been less than helpful and a trip to Cambridge on Wednesday evening revealed my laptop required a new motherboard. So yesterday mornings primal scream was probably even more painful that it might have been. Rushing around for my trusty companions to the hospital, the blood suddenly drained from my body as it dawned on me that my missing mini iPad and iPhone were in the WASHING MACHINE. How could I be so stupid! OK I know I am on rather a cocktail of strong drugs but had it really come to this? I felt I had lost my mind, so disappointed in myself, proof now that I really wasn’t the girl I once was.

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How could this have happened to me. I think the devastation of all recent life events and changes just came to ahead at that very moment and I sat crying on my stairs. Why me, why this when would this hell be over? See I can be quite a drama queen really.

In the big scheme of things this paled into insignificance as the rest of the day started to unfolded.

My appointment with the consultant yesterday revealed the current myeloma situation and planned out the next few weeks ahead. My Myeloma is not responding as well as it should to the treatment so far so it’s time to bring in the big guys. On April 29th I will be admitted for an extreme regime of a cocktail of chemo drugs that will hopefully hammer the hell out of those cancer rats. It appears that this won’t be without significant risk to most of the organs in my body. Colin and I sat there in horror as side effect after side effect of each drug and treatment was read out. This four day onslaught will put me into a state that will leave me very weak and open to infection. If all goes well and it does a good job on the cancer cells, three weeks or so later I will return to hospital to have the stem cells I put on ice returned to my body. Another process that will cause significant sickness. It all seems rather unbelievable because physically I don’t feel unwell at the moment (maybe due to the large amount of pain killers). I did ask the consultant what would happen if I just put the process off but this isn’t an option if I choose life.

So yesterday was pretty rough going all in all. It was made easier however with the delivery of a lovely sausage supper and hug from a good and lovely dear friend.

And I do have some further good news to report.

My technology was covered under our home insurance and I now have a new mini iPad, iPhone and Mac computer in my grubby little hands. So not all is lost.

I shall visualise the same thing happening to my Myeloma, a quick wash and fast spin resulting in a new beginning and even faster operating system!

The sun is shining, today my lovely daughter is taking us out for lunch. I have another lunch date for Sunday, an Easter a Egg hunt planned and no more hospital visits until Tuesday. And you can bet your bottom dollar I will NOT be doing any washing.

Wishing you all a lovely Easter

Deborah x

Oh what a day…

yesterday was!

After another lovely breakfast at our NHS hotel, we headed down to Radiology for my planning session. This involved lying flat on my back on a bed that took measurements with a dome shaped machine and laser lights of the tumour on my spine. A tattooed dot was then applied to the middle of my breast bone. It is hardly visible but will be there for life. So there is no getting away from it, I now have a tattoo which they were unwilling to embellish in any way. We were then told to go back to out hotel room and wait for a call to attend for the radiation treatment to start later in the afternoon. I am to have 5 sessions in all.

We knew our room had only been booked until Monday so we were also awaiting to hear what next to do about accommodation. We tried finding out but were told to wait for a call, which we eventually received from the hotel after 1pm asking why we hadn’t vacated our room. So we made our way, bags and all up to Ambulatory Care. Here we were able to see one of our hospital consultants who had a break between her clinics.

It was decided after a quick assessment that I could go home and travel in for treatment as long as I kept a close eye out for any signs of deterioration. The only beds that were available in the hospital were on non Heamotology wards and none of us thought this appropriate. So we went to hang out in the Macmillan lounge whilst awaiting for the call down for treatment. Thank Goodness for the Macmillan service,  a combination of drugs, poor sleep and confusion meant we were both feeling pretty emotional and grateful for the support they had to offer.

I eventually got a call for another appointment on Wednesday with he Radiologist Consultant (I think). At this point, I thought I had better check on appointments again with the front reception desk, who then informed me I should have been in another clinic half an hour ago! We made our way down to Radiology but they didn’t have a record of this so told us to hang around for another couple of hours until I was eventually given my treatment at 4.30pm.

Apparently radiotherapy  is is quite a complicated process, there is lots of working out to do to ensure that the patient receives the right amount of radiation to the right place. I am very grateful for their caution and expertise.

Receiving the radiation is like entering another Parallel Universe. It is all very quick and pain free. I had to lie flat on my back on another bed whilst another contraption slowly revolved around my body doing whatever it does. The operator leaves the big white space at this time and you just lay still for about 5 mins. Job done!

It was then another couple of hours wait for transport and our journey home. I must admit we were very grateful for the meal provided by Colin’s parents and to get back to our own space even if wasn’t until gone 9pm. Sleep however wasn’t on my side with steroids waking me hourly for visits to the bathroom.

So it’s back again today, tomorrow and Thursday for another round of radiation. I get the bank holidays off and go again on Tuesday the following week. Who knows what happens after that?

The side effects should be minimal but have been told to expect the pain to increase before it starts to get better. I may also experience sickness and other digestive problems due to the treatment but I have a host of medications to help with every symptom along the way.

This is my dressing table this morning!

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Whilst all this has been going on my new toilet has leaked and is awaiting replacement and worse than that my laptop has died! Colin bought the laptop down to London but none of the Apple stores in London had a free appointment slot until next week, so we will try to pop it in to the Cambridge store after my treatment tomorrow. We have lots of work that needs completing and being without my technology is just the last straw!

There is Easter weekend to look forward to and I am really excited about catching up with my family. I haven’t seen Elliot for a few days now and he is growing up so quickly so I think an Easter egg hunt is in order!

Thank you all for your continuous kindness and support just knowing you are there makes a big difference.

Deborah xxx

Making plans…

seems to be pretty difficult when you have Myeloma as you never know what will happen next.

Over the last few days I have developed some sciatica pain. This is one of the red flags for Cauda Equine and unfortunately it is something that has to be taken pretty seriously. I was concerned so I rang my a London hospital yesterday evening and they advised I came over to A&E. Sitting in A&E on a Sunday evening when I could be home watching Mr Selfridge was very frustrating. I didn’t expect them to keep me in though. I eventually arrived on the ward just after midnight. At least I have my own ensuite room but having been given more steroids it was very difficult to sleep. The really disappointing thing is that Pollyanna has taken the day off work today and had planned to take me out for the day. She had even booked lunch in a Michelin star restaurant! It is in Cambridge but somehow I doubt I will get out of here in time and I am not exactly dressed appropriately. Hey Ho such is the life of a Myeloma patient.

I expect you are wondering how the bathroom is getting on. Well it has been quite a slow process but I think I will be able to show you the finished article by the weekend. It is looking really good, very clinical and easy to keep clean. I can’t wait to have my first bath in there. I was hoping to shop for some towels and bits today but we shall just have to see how it goes.

This week is my last week of my third chemo cycle and then I get a weeks holiday and I can’t wait. Maybe we will plan a trip somewhere? Or perhaps I shall have some long lazy luxurious baths in my new bathroom. We do however have plenty of work to keep us busy.

I am still entering lots of competitions with the help of my monthly Competitors magazine so I am waiting for my prize’s to start arriving soon. I am forever hopeful.

For any of my NHS colleagues that work in a hospital please check rooms out for loud ticking clocks. Most people have watches or phones that tell the time so I am not sure that a clock in the room is entirely necessary and it is just another thing to keep you awake at night. Never mind the constant reminder of how slow the time is passing. I mustn’t complain Addenbrooks is a lovely modern hospital and so far the doctors and nurses have been excellent. Hopefully I will get a cup of tea or even some breakfast soon.

Forever optimistic

Deborah x

Mental Health Resources and Wednesdays.

First of all it is fair to say I am not too keen on Wednesdays. For me it means early starts leaving home at 6am, and late finishes, yesterday it was 7.30pm before we arrived home again. With chemo in between and over 40 tablets to take I am pleased when Wednesdays are over. Being the first day of another cycle however I had my monthly appointment with my lovely consultant. The news yesterday was good with the latest MRI showing that the mass around T12 in my spine is shrinking. I won’t know the para protein results for a few days but the signs are all good. So the plan is to continue on this path, completing a total of 6 cycles of the three chemo drugs, so I should be finished sometime in July and then we shall just have to see what happens next.

Meanwhile, now that the BrainBox resource is out and available, I am passionate about building a website and business that provides mental health resources that will help make a difference to both children’s and adult’s mental health and emotional well-being. It is sometimes quite difficult to find the right resource for the job so I want a site that reviews the resources and promotes the best product to meets the needs required. During my career I have been lucky enough to meet up with other creative and innovative health professionals at awards nights etc, that have designed and produced resources that are really making a difference to their clients. Hunting these products down can sometimes be quite a challenge so I would love to have a one stop place which provides reviews and information about products that work. Marketing and web design are challenges in themselves so there is quite a lot of research to be done yet but it’s something to work on. Any marketing tips will be much appreciated.

So there’s lots more to do, you haven’t heard the last of me yet, as my passion for improving mental health continues.

Have a great day

Deborah x