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

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

Nice surprise to see my name in print.

The other day I received a book in the post which to be honest I thought was a catalogue and just put to the side and almost into the recycling bin. On closer examination it was this.image I had forgotten I had written a chapter for this book with a colleague some time ago. It includes the BrainBox, LAMBSS and the Visual CAF, tools I developed during my career as a nurse working with children’s mental health. It’s available as a paperback or kindle version through Amazon and contains a number of physical types of clinical assessments as well as my chapter on mental health assessments.

Other news is that today we are having a carpet fitted on our newly painted hall stairs and landing and going into our bedroom which is very exciting. The house is really coming on and we feel much more organised. It will be great to have this done before our weekend away and then my trip into hospital.

We are really looking forward to a couple of nights away in the motorhome before my hospital admission. I must admit I am starting to feel a little nervous about the prospect of subjecting my body to the large amount of toxins it’s going to receive next week but the job has got to be done. Yesterday we were back down to London again where I had some tests on my heart and all seems pretty healthy there. It appears that I am a bit of a mystery to my consultants and I am confused about my para proteins as my cancer markers seem to be low but the cancer is still so active somewhere in my body. I don’t really know how they know this other than because of the mass that grew up around my spine that showed up on the MRI scan. Hopefully the last radiation treatment I received on Tuesday has got rid of most of this. The pain killers are working well although I am feeling a little sick which was a side effect I was told I could expect.

I get to see my lovely grandson again this afternoon who always brings such joy and laughter along with him.

Today will be a good day.

Enjoy yours!

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

All in all it hasn’t been a bad weekend.

I have been put up in the UCLH, NHS hotel called The Cotton Rooms. For those of you who don’t access Facebook here are the photo’s. Included in my stay is a full English breakfast and or, as in my case, a continental breakfast too! And Colin also gets to enjoy all the facilities.
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It really is most luxurious and I remain under the care of the hospital accessing support from Ambulatory care on floor two of the cancer centre.
The weekend has been made all the much better by a visit on Saturday from my lovely mum and sister. Together we enjoyed a lovely lunch followed by some rather nice cakes and tea and a stroll up the road to Primark.
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This morning we were visited by best friends Sue and Angela and this afternoon my lovely friend Allison. I was also spoilt by a surprise delivery of some champagne truffles delivered by hand from the lovely retired vicar from our village in Hinxworth. Both Colin and I feel so touched and honoured by such warmth and kindness.

Health wise there have some been some aches and pains but I am keeping them well under control with the help of some strong morphine based medication.

Tomorrow I have an 8.30am appointment in Radiography to set up my radiation treatment for the week. I really do hope we will be able to continue to stay in this amazing accommodation whilst undergoing the radiation therapy I require. Otherwise I will transferred back to the ward or be sent home and have to come up to a London on a daily basis. They are a little worried about me doing this though as the tumour has grown and is pressing on my spine and they don’t want to risk any compression to my spinal cord. I shall just have to wait and see.

I remain very impressed with the treatment I am receiving here at UCLH and feel confident that all the professionals are doing their very best to manage the situation. I do hope however that they get to the bottom of why my cancer markers Don’t show up in my blood results but I still have this tumour that seems to be increasing in size at quite a rate. Apparently I am quite an anomaly, nothing new there then!

Take Care everyone and thank you for your continuous love and support.

Deborah x