Up and down on the Rollar Coaster

Well this week has had its difficult parts to put it mildly.

It started off ok. Last weeks hospital visit with no blood transfusion ment we were home pretty quickly. Home at 3pm is much better than 7.30.

The next day I planned a shopping trip and was so exited as it had been months since I had gone anywhere other than the hospital. I did very well visiting two shops until, in the afternoon at home, I became rather manic and completely exhausted myself by frantically trying to do some craft work which sadly I had to abandon.

The next day I had to call on mums help to get up the stairs at the Cancer Hair Place. I really don’t know how I managed it?

Friday afternoon took a turn for the worse. My temperature soared and to avoid hospital I did all I could to bring it down. Wet cold flannels, fans on full blast and all our bedroom windows were opened. Not forgetting regular doses of paracetamol. We were all pretty worried. The Hospice girls turned up with a commode and zimmer frame. Both of which are a help but represent how the Myeloma journey is progressing. They will both be banished from sight as soon as I start to feel the positive effects of the Revlimid.

On Saturday a whole lovely army appeared including, a district-nurse team to help give me a freshen up. Then another District nurse came along.

By Monday I felt slightly better and my temperature had gone down thank goodness.

I was then visited by Amanda, my cousin is currently living in Dubai, so Amanda was her ambassador. It was a lovely peaceful experience with some chatting and prayers. I, as Colin were very appreciative of her visit.

Well today IS going to be a good day as it is Elliot 3rd birthday. They will pop in with a cake but not stay too long as sadly I get so exhausted.
The first challenge is to get downstairs. But I’m slightly stronger and I could be pulled down on a blanket. How I will get back up again I don’t know.

I just need to get my MoJo back in time for Christmas

Happy 3rd Birthday Elliot we love you so much xxx

The lights look beautiful.

Thank you , I don’t think it took so long to put up and both Colin and I were very grateful for the help.

They are hard to photograph but look very pretty.

I also had a lovely surprise  from my youngest daughter Jem, who bought us some special bedding and has treated us to some tasty take aways.

Spent most of the afternoon sleeping probably as I had just finished a four day stretch of steroids.

Deborah xxx

 

It’s all pretty confusing.

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

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

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

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

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

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

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

Love to you all

Deborah xxx

 

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

The great, the hiccup and the next step

Well let’s just get the not so good out of the way (the little hiccup). I seem to have got myself an infection causing my temperature to rise, lots of coughing and a feeling of even more exhaustion. After a trip to A&E on Saturday when in hindsight I should have been a little more patient and hung around for the doctor to examine me, things slowly got a little worse. I thought I could hold off until today’s appointment with my consultant but the specialist myeloma nurse insisted I came in yesterday. At least I could get the two types of antibiotics started.

The GREAT news is that there are no detectable paraproteins in my blood and nothing showed up on my bone biopsy. I think this would qualify me for the title of remission.

For some this could last anywhere from a few months to many, many years. I have heard of people who have had 17 years of remission following their stem cell transplant.

Unfortunately my myeloma is a little bit naughty, it has shown to respond well to treatment but has quite quickly returned. I have also had those pesky couple of masses on my spine that didn’t show up in my blood results, this is called non secretory myeloma. So baring all that in mind it looks like I will need to start on maintenance treatment. I am not sure what form that will take, but it will be some type of chemo together with its list of side effects, I’m afraid.
Let’s wait and see, at the moment I shall wallow in the good news for now. And with the Stand Up 2 Cancer campaign raising over 14 million pounds for Cancer research a cure could be just around the corner.

I am awaiting a call from the nurse to see if I have to go back down to London again today. Honestly a day in bed catching up on The Apprentice would be far more preferable.

There also seem to be a few hiccups with our new car that we still hope to pick up on Friday. Nothing is ever easy,

Mentally my spirits are pretty good, after hearing yesterday’s good news and especially after catching up with an old colleague on Tuesday and taking part in a school nurse Twitter chat. It makes me feel I can still be of some use and reminds me how I need to get on with finishing my book on A guide to Childrens Mental Health for Parents. It will have a better title than that though.

You would think that being retired, you would have so much spare time but it doesn’t seem to be the case. I suppose it’s 8am already and I would have done a couple of hours work by now. Time really is just a concept and it’s how you use it that matters. Pollyanna is living with us at the moment, she leaves early and comes home late, still full of excitement and passion, She really has quite literally stepped into my shoes as I noticed my special Russel and Bromley shoes on her feet! I am so proud of her.

On Monday we took Elliot to Woburn Safari as it was the last chance before we got our new car. It was a lovely morning as we drove around and the monkeys scrambled all over our roof and bonnet. Elliot was so excited and it was an easy trip for me to manage as most of if was just sitting down in the car. Bless him he really is a joy and such a credit to his mums excellent parenting.

Lots of love to you all
Deborah x

Day 100 and look who’s home.

I must admit there were times I didn’t think I would reach this day but here I am, a hundred days on from my stem cell transplant. My hair is growing, I have eyebrows and eyelashes and I even have had to shave my legs! Fatigue does still remain a bit of a problem making it difficult for my body to do what my heart and mind desires but everyday sees an improvement. Next week I will get the results from my bone marrow biopsy and my latest blood counts. Sadly I am a bit concerned about my heamaglobin levels at the moment, as I am struggling a little with my breathing causing me to cough more than is normal I just hope it’s nothing too serious. Having said this I can happily look back and see how far I have come since my rebirth on July 10th. Just look at the fun I can now have with my lovely grandson.

And look who’s home.

Frodo has enjoyed staying with Colin’s parents up in Weston but we have missed him. He is such a lovely relaxed boy to be around. The only time he is a bit naughty (only for us!) is at night. Wherever we try to settle him down he will bark several times in the middle of the night, and get us up the little minx. I think he is happy to be home, he loves it in the motorhome and going on long walks with Colin but is getting pretty old now. We are not sure of his exact age as he was a rescue dog but we think he’s about eleven now.

Yesterday was a real treat for me as my sister is back from Somerset for a few days and we had a lovely visit from mum, my Aunty Mary and Uncle Ian from Cornwall. It is so good to catch up with people again. I didn’t realise quite how I would miss the social interaction I used to have when I was at work. Thank you to those of you who have stayed in touch it really does make a difference. I am trying to fill my diary whilst I am feeling so much better with catching up with old colleagues and friends. If you fancy popping over for a cup of tea and a chat your company will be most appreciated.

Recently I caught up with an old friend and colleague who since retiring makes the most beautiful silver jewellery. Ruth also runs classes and workshops which I am hoping to join in with sometime soon. Take a moment to look at her website http://www.ruthlewisjewellery.com

More exciting news – next week we pick up a brand new car and not just any old car but a B class Mercedes no less!

We still can’t quite believe it. This week I received a letter from the disability allowance which awarded me the higher amount of mobilty money entitling me to take part in the mobilty lease scheme. There was a bit of a problem at first, as I received the letter four days later than the amount was awarded resulting in it being four days short of a full year and at first Mobilty wouldn’t accept the claim. Colin however called them back and they kindly changed their minds. We did however have to choose a car from the hundreds of models available pretty quickly. We tried out a few and this car seemed to be the most comfortable. It uses my whole allowance and we had to put a down payment of £3,000 due to all the extra bits we wanted but I think it’s worth it and we have got our car to sell so that should more than cover this.  I am so excited as it has all sorts of fancy things like heated black leather seats, lumber support and a reversing camera. I shall be needing that especially as I haven’t driven since I was diagnosed almost two years ago now. We pick it up on Friday so only one more trip down to London in our old car. Having said all this, of course I would swap it in a trice to be Cancer free.

Today we are meeting up for lunch with my good friend Jane who has moved recently to work as a health visitor in Guernsey. It will be great to hear all about her new life on the island. I also have a coffee date with another old colleague on Tuesday, so that and the car will be a good distraction from the hospital appointment on Thursday.

As I regain more of my physical health the challenge is now to stay on top of my mental well being. I know all the tricks of the trade but applying them to ones self is never quite so easy. I want to do more than my body allows which can lead to frustration and disappointment. I need to give myself a kick up the back side sometimes and remind myself just how lucky I am compared to many people. I also have such a wonderful circle of family and friends many of which I have only ‘virtually’ known since writing this blog. People from as far off places such as America, Canada and Sweden. How lovely it would be to actually meet up and thank them in person  for all their support. Maybe I should add that to my dream list.

I would like to thank all those that took part and donated to Stand up to Cancer which was televised on Channel 4 last night.. So far they have raised £14,520,756 A 100% of which goes to Cancer Research. This may just be what’s needed to find a cure for Myeloma so fingers crossed.

Meanwhile I have some serious living to get on with.

Much love to you all

Deborah x

A busy week

At the beginning of the week I wasn’t sure how I would find the strength to achieve all that I had planned. Each day however I have been getting a little stronger and I am delighted to report all has gone very well.

My first challenge was to have an evening out with some old colleagues back from the days when I worked at the Lister Hospital. It was something I haven’t been able to do for some time now.  I was kindly picked up by one of my friends and we met up with the other three girls at a lovely Turkish restaurant in Hitchin. A good time was had by all.

The next day a shopping trip was organised with Pollyanna. Planning ahead I called Shopmobility at the Cambridge Arcade and booked myself a mobility scooter. I found this quite emotional as I just wanted to be able to wander around with my daughter, as I was able to do, less than two years ago. It was however very helpful and worked out much better than being pushed around in a wheelchair and gave me the independence I needed. It is a free service and you even get to park for nothing and once I got the hang of it I was whizzing around in and out of all the shops I could get into.

It was also our 10th Wedding Anniversary on Thursday, and I felt very grateful for all the wonderful times Colin and I have spent together. We really are soulmates.

Friday was spent cooking and preparing for a family lunch on Saturday and packing up the motorhome for our trip away. This was something I couldn’t have even dreamed of doing last week when even getting downstairs was still quite a struggle. It was also great to feel I was able to help out a little and not leave everything up to Colin.

Yesterday was a lovely day as we were joined by Pollyanna, Jem, Elliot, Lucy (still in her mummy’s tummy), my nephew Charles, my parents and my Aunty Mo and her partner who were visiting from Australia. It was very exciting to see Mo who has been a great support to me, from the other side of the world via the internet.

So here we are today travelling down to the channel tunnel. The sun is shining and I am able to put Myeloma to the back of my mind. I am enjoying life again and taking full advantage of feeling well for the first time in many months. It is day 73 (of my Stem Cell Transplant) and I can assure my fellow myeloma buddies that there is light at the end of the tunnel. This was something only a few weeks ago I dared not to believe myself.

So very soon, slowly we will meander through little French villages, stopping at local patisseries for fresh croissants and a baguette or two. We shall sample local wines and enjoy some Moules Mariniere and Frittes. Most excitingly, we will be meeting up in a few days time, with our best friends Sue and Angela, who are already in the Haute Vienne region in France. We have every convenience on board our motorhome and we will enjoy relaxing, reading and just spending time together. This really is the good life, long may it last!

Much love to you all and thank you for helping make this possible.

Deborah x
PS. Just stopped off for a fry up as we are so early for our channel tunnel train.

A day of rest.

I think that’s what the doctor would order, not that I’ve done that much really but my body is seemingly telling me enough is enough.

On Thursday, I had a lovely pampering session at the Cancer Hair Care place, (for those of you who haven’t already read about this on Facebook), I even got my wig cut. This is such a worthwhile service and I have been so lucky to have had their support over the last year or so. It really does make a difference to be able to go somewhere every one is in the same boat and understands what it’s like to lose your hair and go through some pretty horrible experiences. All of the volunteers are so helpful and the service is free to women needing support to deal with these issues. They are however desperate for funds if they are to continue and are currently looking for some great raffle prizes. Please take a look at their website and let me know if you do have a prize I could let them have.

www.cancerhaircare.co.uk

Cancer can be an expensive business especially if like me you have had to give up a full time job and try and manage on a small pension. I am quite lucky though both Colin and I have always been grateful for the simple things in life and don’t really need much to make us feel happy. Just a cure for Myeloma would do me, now surely that isn’t too much to ask?

On Friday we had a great day out with our friends all be it just meeting up in a car park in our motorhomes. You see you don’t need loads of cash for the company of good friends and a shared picnic. It was in the lovely grounds of Wrest Park in Bedfordshire only about 30 mins drive away. We feasted on great food, chatted, laughed and enjoyed a glass of wine or two. We dreamed of houses in France and reminisced on our holidays abroad together. A good day was had by all.

On Saturday we were back in our motorhome, this time on our drive, as the plumbers came and fixed our hot water. Helga our very old Hymer has everything on board so Colin cooked us up a delicious full English breakfast. In the afternoon mum and I went to the ‘Big Event’ on the village field and I managed to walk around most of the stalls. Luckily there were strategically placed chairs for me to take regular rests otherwise I would never have made it, but it’s another step forward. It was a real village affair with displays of the best grown carrots and homemade scones, a tombola, fancy dress, country dancing, wellington boot throwing contests and all the other usual country village fair bits and pieces. I was out in my newly trimmed wig and got a few strange looks as people didn’t quite recognise me especially as I have lost quite a bit of weight since folk last saw me and I was hobbling around with my stick. I must admit I thoroughly enjoyed being out in the fresh air and soaking up the atmosphere.

Sunday was another good day. Colin and I enjoyed a lovely lunch at my brother’s house. The food was again delicious and the company was great as we sat out together in the sunshine after a hearty Sunday roast.

So you see I haven’t done much but it’s been enough to make me feel pretty exhausted. I have learnt how to listen to my body when it’s telling me to rest. I do wish I could do more though, especially to help Colin around the house with the daily chores, but it’s as much as I can do to get myself dressed at the moment. Never mind each day sees an improvement and on Thursday we are back down to the hospital in London to find out the next plan of action.

Take care dear friends and thank you once again for your continuous support and words of encouragement.

Deborah x

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.

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