Update #6

March was the month of change, where I was suddenly felt pain I've never felt before.  I presumed the pain would come gradually not as violently as it did that first morning. 
Six weeks previously my palliative nurse had talked to us about 'just in case' drugs. So if pain came during the night a nurse or a paramedic could come to the house and administer the strong painkillers they aren't authorised to carry themselves. 
That morning we called the paramedics who couldn't do anything because the 'just in case drugs' hadn't been delivered! They rolled their eyes when they found we didn't have the drugs. They helped me back to bed and we waited for the nurses and doctors to help. It was a long hard and painful day. I didn't move and slept most of the day. The drug to help with the pain is called zomorph and it's a really effective pain killer. 

A charitable organisation called the Willow Foundation (www.willowfoundation.org.uk) arranges special days for seriously ill young adults. I asked to go to the England vs Scotland Six Nations rugby match at Twickenham. The tickets for me and a carer (Natalie) arrived with hotel bookings for Friday and Saturday night because my energy levels had been getting lower every day. Zac suggested that there should be a try out for the much envied position of carer! Natalie won!
Unbeknown to me, my palliative nurse after the long painful day, had told my family that she didn't think I wouldn't well enough for Twickenham. Little did she know my determination to watch my favourite sport was stronger than any pain I might encounter. 

Before we arrived at the stadium, Natalie said we had to be there for 1.30pm, I thought, kick off isn't until 4pm. We arrived at 1.30 and we weren't allowed up to our seats. I said why are we here? The only things open were food places and we weren't hungry because our friends Loren and Charley Jones had brought a beautiful brunch for us at the hotel. Natalie sat on the steps and me on my mobility scooter and we sat there waiting and I thought okay. Eventually we spoke to some information people who said we could go up to our seats at 2.30 and then it was 2.15 and Natalie said should we go up now and I said kick off still isn't until 4 so if we get to our seats there's nothing to do up there.  We started going and handed the tickets to the lady at the lift and Natalie's phone started ringing so I waited while she answered it. 
We went up in the lift and I backed out in my scooter and gave my tickets to the steward who directed us to our seats, so I scooted along when Natalie called out 'Talitha!'. I felt a tap on my shoulder and a voice said 'You just went past me!' I looked up and saw JONNY WILKINSON! (www.jonnywilkinson.com) I said 'oh my goodness it's you'. I drove straight past him because I had no idea he was going to be there. I couldn't believe it. So we then had an amazing conversation, he was so nice. His mum was there as well and she asked 'where's Josh? As Josh had organised the surprise meeting. We talked about our family and how many there are of us and they were impressed with that. Explained that Natalie and I are twins. Then we spoke about the previous matches England had played. We talked rugby and tactics and I said how I thought he's a great person that I've read books about him and how he's a great rugby player but an amazing person as well. He said when you're playing rugby you're so focused on the game that you don't really see anything else but after rugby you see everything, that there's a whole life out there and it's just rugby. He thought me and people like me are the inspiration and he draws a lot of strength from that. Natalie mentioned that it was a good day for rugby, not too windy compared to last week where the kicking was off because of the wind. He said well that's what they'll say but they practice for that. We both said he was the expert he would know. We also mentioned how we had met Jonah Lomu (Jonahlomu.com) and become good friends. He said he really liked him and remembers meeting him France and how amazing he was. 
His mum was so glad that they could do this and hoped we enjoyed every minute. His security were trying to get him to leave but he shook them off. I said you're commentating today and he said yes, they're always trying to get us to do rehearsals. He said he told them you just ask me questions and I'll answer, what do we need to practice? His phone rang as well and he gave it to his mother to answer he just wanted to stay and chat. His mother gave me a hug before she left (she left sooner than Jonny because it would take her longer to get to the other side of the stadium). 
Jonny had a base ball cap to put on so he could get past the crowds of fans who would stop him on the way. Before he left he gave me a hug and said stay in touch. 
After that wonderful experience we watched the most amazing match. Poor Scotland didn't have a chance because so many people were praying I'd have a great day. The final score was 61 to 21. 
There was another great moment that happened on the way to the car, you can read it on Natalie's blog http://nataliefurbank.blogspot.co.uk/2017/03/11th-March-2017-Twickenham.html?m=1

Just a bit of background information about how Josh arranged this surprise for me. Josh knew that Jonny was going to be working at the stadium for the match so he wrote to Jonny's mother and asked if it would be possible to arrange a meeting. She said because his work schedule was very tight she didn't know if it would be possible but she would try her best to make it happen. Because of the uncertainty my family decided not to tell me about it, in case he was unable to make it and potentially spoil what would have been a great day anyway. On the Friday before we left for London Natalie had a phone call from an unknown number, it was Phillippa Wilkinson, Jonny's mother! She said 'hello this is Phillippa Wilkinson, Jonny's mum, Jonny Wilkinson's mum, he plays rugby or he did play rugby. Do you know?' Natalie replied, 'yes I do know'. They then made tentative arrangements to meet the next day. Hence the requirement to be at the stadium earlier. The phone call Natalie took before we went up in the lift was another unknown number. The voice at the end of the phone said, 'hi, this is Jonny Wilkinson'. Natalie had to remain calm and not give the game away because I was right there. He told her that he was waiting up at our seats, so when the lift doors opened and I was facing into the lift Natalie could see over my head Jonny waving at her. A great experience for her too. All the family back at home were waiting on tenterhooks to hear if the meeting happened, and were all thrilled when I sent the text, 'I just met Jonny Wilkinson!'

It was one of the best days of my life and it was the last outing I've had. My mother said to my father as she saw me walk to the car on the Friday we left that she didn't think I'd be able to walk out of the house again. That proved to be true. It was indeed my last outing. 

Update # 5

Jan & Feb 2017: After the New Year everyone got back into routine, back to work and school and I had my own routine, waking up early and getting myself breakfast - I was still very swollen from the steroids.
Had stockings on every day to help with the swelling on the legs, that helped me walk better. Then when the stockings came off Natalie and Mama would massage my legs, which helped move the fluid away from my feet and lower legs and made them feel more comfortable.
We made use of the mobility scooter and went to the beach for walks along the prom, we also went out for lunch at least once a week. It was good to get out of the house and enjoy the fresh air. Over the weeks and months I have had so many visits and been really grateful there have always been flowers and cards and chocolates adorning the house.
For in January one of my best friends Sandi came over from America. It was so lovely to see her. Her suitcases were full of food that she knew I loved from America. She didn't come for a vacation for her, she worked and did what ever she could to help. On the weekend it was her birthday, but she still insisted on cooking for the whole family. It was delicious everyone loved the dinner and desserts. We celebrated her birthday with her and she was really surprised that she had gifts. Even the nieces and nephews made cards and bought her presents, she in one week become part of the family. Every night she took over the role of masseuse not only was it a comfort for me but we caught up and talked into the late night.
Natalie, Sandi and I spent a day seeing the local sights it was a beautiful day. We went  to Sandbanks and across the ferry to Corfe Castle. We were going to go to Tyneham but the tanks were shooting so the village was closed. We went to Lulworth and I got the mobility scooter out and we went all the way to the bay. After Lulworth we went to Durdle Daw and then Poundbury. We took a tour of the lovely village of Poundbury and ended at a lovely new restaurant The Duchess of Cornwall and had a delicious three course meal that we couldn't finish. It was a lovely week but so difficult to say goodbye. It brings tears to my eyes as I think of it.

February was very much the same as January but in the last two weeks my energy levels were lower, so it was more difficult to get out.
The 27th February was the last time I was able to get up the stairs to my bedroom, I was so worn out by the time I got there I could hardly get into bed. Natalie and I got quite emotional as we realised things were starting to change, quicker than we thought. I remembered that March was the sixth month after being diagnosed and they said I might only have six months left.
So we decided it was time for me to be downstairs and ask for a hospital bed.
The district nurse came the next day and she ordered a bed and it arrived that evening. What amazing service.

Update # 4

Centre Parcs & Christmas 2016: For those people that don't know Centre Parcs is a holiday village and there a a number of them throughout Europe, and 5 England.
It has been an annual Furbank Holiday the week before Christmas and this was our 27th year (for some of us - recently not everyone could do it as the children weren't allowed out of school) But this year, as it was my last everyone had permission to come and spend time with me 😊 In total there were 40 of us, as some of my cousins came too.
We went to Longleat Centre Parcs, which is only an hour away from Poole, so the Dr said I could come back to the hospital if needed.
My cousin Laura who has a chronic back condition and I needed mobility scooters so we hired them for the week to get around as Longleat is very hilly. On day one we arrived unpacked and rested. Stayed in a very comfortable in villa with all the girl cousins, it was so fun to be together. The rest of the family were in different villas but close by. We played games together and caught up as one of my cousins had just flown from America (the first time in 7 years) over especially for the holiday.
Went swimming the next day, it was really nice to float and be able to stand and walk in deep water without wobbling and falling over. It meant that I could stand and not be weary as we caught up and also played with the children. The only down side to that was when I went out I felt heavy and wobbly and assistance. Through the week I managed to go swimming three times, somethings  in the dark. The outside pool was warm and really fun with the children. I loved being able to hold the children as we looked at the Christmas lights.
On Wednesday my cousin Amy and her husband Michael arrived from America to join us.
During the week went to different restaurants, spent time with different people and enjoyed having fun times and making memories. Had pancake breakfast at Zac and Su's/Josh and Sarah Jane's.
As a thank you to the Centre Parcs staff for being so good to our family, we sang underneath the large Christmas tree in the morning plaza. We made a great sound which created crowds of appreciative passers by, I think we should have sung for longer!
Thursday night is always our last night but a special night. Where we all gather together to have Chilli, hot chocolate and sing carols in front of the fire. It was a lovely evening with 40 of us and prepared us for the Christmas season.
Back home we had a week to make final preparations for Christmas. On Monday we took Amy and Michael to Lakeside, one of our favourite Fish and Chip restaurants, it was a special evening as we've never done this before at Christmas, the staff were lovey and accommodating supplying us with crackers and Christmas hats, and a three course menu. When we got home Amy and Michael wanted to do Family Home Evening, she showed video that she'd edited videos from friends and family she'd asked to provide a Christmas message to me.
It made my evening it touched my heart, thank you everyone for making the effort. Amy had to edit them as some of them were 6 minutes long. She has sent me all the full length videos and I'm now watching them individually. What a blessing it is to have so many friends and people who have touched my life.
I enjoyed the mobility scooter so much that Zac and Su bought me one and gave it to me as an early Christmas present so I could get out and about on my own. I managed to go along for a family walk on the prom by the beach, to Poundbury Garden Centre which does a lovely Christmas display and shopping with Natalie and Fellicity.
The Friday before Christmas Auntie Maureen organised an open day for Amy and Michael in Cheltenham. She invited me to come and meet with friends, some I hadn't seen in 20 years.  It was really lovely to catch up with everybody but the goodbyes were quite emotional.
Saturday, Christmas Eve, all the family that were coming to our house for Christmas Day were assigned different components and for Christmas dinner. So I prepared the sprouts while watching Christmas movies.
Then in the evening the family came for our traditional Roast Pork supper followed by Chocolate Roulade. We all sat in front of the Christmas tree and fire as we sang Christmas songs and carols, listened to poetry, stories and scriptures. I felt really good as it's something we do every year and it's what makes me love Christmas so much. Even though it was the traditions we have every year, that I love there were occasions as I looked at the children knowing this was my last Christmas, I hoped they would remember me. I love to see the children at Christmas. Even now as I write this it makes me weep, but Mama who is typing for me reassures me that I will always be remembered because they will have pictures, tell stories and talk about me all the time.  When looking at the Christmas tree and thinking of Centre Parcs not knowing when or how long I had left or what would happen next I had these wonderful times to  comfort me and build memories for the eternities.

Christmas morning there were only five of us for opening our Christmas stockings on Mama and Papa's bed and for our traditional gammon and eggs breakfast, followed be toast and clotted cream.
I wasn't well enough to go to church or the ward Christmas carolling at the Care home.
When everyone got back we started opening our presents. Zac and Su and their two children came a little bit later followed Jared and Genevieve and theirs. I wanted to buy gifts that people would keep and remember me by. I bought books for the children. For my two sisters Natalie and Felicity I bought them the three sisters figurines as it reminded me of us. For my parents and brothers I bought a figurine holding for-get-me-not flowers. As each gift was opened there was an outpouring of love and emotion.

We had our traditional turkey dinner that is always amazing.
Those who were here were, Grandma, Jared and Genevieve and their children, Ophelia, Ephraim, Emmanuel and Indigo, Zac and Su with Megan and Oliver, and our dear friends Alan and Tracy Au.
The rest of the day into the evening we played games, ate food and had lots of fun. More Christmas traditions and memories.
The next couple of days even though Christmas Day was over the festivities continued as Ben and Kizzy and Josh and Sarah with their two, Lucas and Jonah.  arrived. Finishing with the arrival of Nathan and Abbie, Finn, Beatrix, Freddie and Poppy.
New Years Eve Natalie, Felicity and I (on my mobility scooter) went out to buy food for the New Years Eve party. We had so much fun that night, our good friends from across the road Phil and Alison joined us for silly games and food. Again my thoughts while the evening was fun had me reflecting on the New Year that was coming knowing that it would be my last year and I wouldn't make it through all of 2017.
For the New Years meal Oliver my four year old nephew was asked to bless the food, in the blessing he said 'please don't let anyone die this New Year!' There was a faint hearted Amen.

Latest Update

As I haven't been doing so well recently I haven't finished some of the updates, like Centre Parcs and Christmas, and January to February yet, but thought I do the latest update now:

Last week an infection started on my right calf and I was put on antibiotics again, after a couples of days it spread further and got more painful so was put on different antibiotics. But by Sunday it had spread further again and the skin had gone bubbly. 

So I was admitted to the hospital, where they took some tests and put me on different antibiotics again. My sugar levels were really high so they diagnosed me with diabetes as well and gave me insulin. 

They wanted to keep me in hospital for a few days, but as it was Mothers Day and most of the family were at home and I wanted to see everyone, so they let me go home, but I would have to go to the hospital each day to get the antibiotics. 

As my energy levels are so low it is a struggle for me to do anything, so by the time I got home and trying trying to get into the house I couldn't lift my legs high enough and actually fell over at the front door steps! 

Luckily Jared and Papa were behind me and caught me to help me back in, but it made us clear that I wouldn't be able to leave the house each day to go and get my antibiotics at the hospital.  

I did manage to get back into bed in my new lovely room at home and have lunch and fun with all the family 😊

On Monday morning Mama called my palliative nurse, Sharon, who, to cut it a little short, arranged for me to go to the Hospice to be looked after. 

So since Monday I have been at Forest Holme Hospice, where the staff are amazing and so are all the facilities. I've also had lots of visitors, which is lovely too. 

And since being here and them checking everything wrong with me, my meds have been changed again and they are trying to sort out all the problems - so I'm hoping within a couple of days I'll be feeling better than I have for the past couple of weeks and get to go home 😊

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Update #3

October 2016: I had an appointment with Mr Grundy, one of the best Neurosurgeons in the country, he explained everything about the brain surgery and asked if I wanted to go ahead with it, so I signed the paper work and then had the surgery done on Friday the 14th October in the afternoon, and I was home by Saturday evening! I couldn't believe how quick and well it went! I had to walk down the corridor and up and down some stairs before they released me home, but I managed to do it 😊
Then 5 days later I went to the nurse at my GP Surgery and she removed the 25 staples I had. I do have 3 bits of titanium holding the circular skull they cut to remove the tumour. But I have one small scar on the side of my head that no one can see as they only removed a little bit of hair and the rest of my hair is long enough to hide it ☺️

Since being diagnosed I have felt at peace with it, it's nice to know I'm not going crazy, as I hadn't felt well for months!  And my eternal perspective kicked in even more than usual. I'm so grateful for being a member of the Church of Jesus Christ of Latter Day Saints (LDS/Mormon) and have the knowledge of the plan of happiness and that this is just the next stage of my life, and that I now get to prepare even better for it.

When I was first admitted to hospital in September I was put on steroids to stop the swelling in my brain and they did help with the pain that I was having in my head and eye so that was good for a while, but then the symptoms started kicking in and I wasn't so happy - I got a rash, my legs and hands were swollen, wobbly and shaky, my neck and face got really swollen and I couldn't wait to be weened off them, but when I was the pain in my head would come back so my steroids would go up again.
I had another appointment with my Oncologist, it was meant to be to talk about chemotherapy and when I wanted to start it, but I was admitted back to hospital again for a blood test and to check my steroid levels, because I was very wobbly and shaky. I was there for another 3 days, but once I walked the corridor and stairs again with the Occupational Therapist and increased the steroids again with a plan to ween off them again but for a longer period, they let me home again.

November & December 2016:  Centre Parcs and Christmas were my goals, as long as I could be ok for those 2 events with the family I wasn't worried about anything else.
So I had to take 4 steroids a day for 10 days, then 3 for 10 days, etc. until I was weened off them - so the last date was going to be the 3rd of December and I was really looking forward to it, as it was the week before Centre Parcs and I thought it would then give me a week for the swelling from the steroids to go down and then I'd be ready or feeling better for Centre Parcs and Christmas.
In the week I was off the steroids, I had a number of days where I was shaking and wobbly, some where I was dizzy and not feeling quite with it, I was sick on another day, and by Saturday my head was in so much pain again I was crying.
So 111 was called again and a Dr was sent out who said I should be admitted back into hospital again - I cried again and told him we were going on holiday on Monday, so I didn't want to be admitted to hospital. He said that if I was admitted that night and they could put me back on steroids I might be able to be ready to go on holiday, so I went with it.
When I first got to the ward I had a nurse trying to put in my cannula in my hand, but it was so painful, luckily Mama told her to stop! As I'm so swollen it is difficult to find any of my veins, they had tried about 6 times, but still couldn't find any, so the pain medication and steroids I took by tablets, and the cannula was put in the next morning after they found a vein through ultra sound.
Once I was back on the steroids and painkillers I was feeling better already, I couldn't believe it, though I knew that people at my church had been praying and fasting for me to be well enough for Centre Parcs and Christmas and could feel the blessings from that.
The Dr saw me Sunday morning and said that if by the afternoon I was feeling ok I could go home, and go on holiday - as it was only an hour away not going abroad anywhere. So Sunday afternoon I was home again and really looking forward to the annual family holiday 😄

Update #2

August 2016: After being at home for a few months and Temping I was still getting migraines, mainly at night, where I was in so much pain I couldn't really sleep and cried a lot of nights. I also had a lot of swelling in my legs and started having a few stomach problems.
I had been to my GP a few times, at first being told I need to loose weight and I would be ok. Then when I kept going back they were just trying to figure out what all the symptoms might be. I had a blood test at one point, only to be told by the GP Receptionist when I called that it came back clear and there was nothing wrong with me. Though by this time my head was hurting more and my left eye had started weeping.
Then at the end of August I was at work when I got really ill, I had come back from lunch feeling ok and my team leader was telling me what I needed to do, I remember writing it down on my note pad and then going back to my desk and going through the different systems that I'd been doing for months, but not knowing which I needed to do! I went to ask my team leader again, but couldn't finish my sentence, but she told me again and I read the notes I wrote and could see I had written it down right, but still couldn't understand it. I then started feeling fun and went to the bathroom where I was then sick 3 times.  I then went back to my desk where my team leader could obviously see something was wrong and sent me home.
I then called my GP again and explained everything that happened, while at the same time still not being able to speak or think properly. I was then told that they would contact the neurologist, but they could only do it via writing and it could be 2 weeks before we hear back from them.
By this time I thought I was going crazy, as there was no answer to what was going on  and I presumed that my family and friends just though I was being anti-social or lazy, because I would just spend a lot of time in room on my own.

September 2016: The pain in my head and eye got worse again and I still couldn't think or speak properly, so my sister Natalie said that I should call 111 (The NHS Medical number) which I did and they advised me to go to Bournemouth Hospital (it was 8pm by then) so my Mama took me. After explaining everything that had happened and what was going on the Dr told me to go to my GP the next morning and put a note on my medical records for my GP to refer me to Poole hospital the next day. Which I did, and my Mama took me to Poole hospital. I had an MRI Scan (which I cried through because I'm so costrihphobic) we were there for a number of hours and I was kind of out of it - I hadn't taken any medication because I hadn't eaten and there wasn't really anywhere to get food. I remember being in the waiting room and hearing people speak but thinking they were all speaking foreign because I couldn't understand anything. But also saying to my Mama, if the MRI scan comes back clear I must be crazy.
Then when I was called in for them to explain my MRI Scan I don't remember it at all - I remember them starting to give me some medication and saying they were going to admit me to hospital and me feeling relieved that I wasn't crazy, but not know what was going on. I also remember looking at my Mama and her looking sad with a few tears in her eyes, but again I wasn't sure what was going on.

I was in hospital for 5 days and still really didn't understand anything, it was good that Natalie, Mama and Papa were there most of the time so that they could understand what was going on. I had a CT Scan the next day and then I needed an colonoscopy before they released me home.

By which time, I think I knew I had a brain tumour and I would be having brain surgery at Southampton hospital within 2 weeks. And would be contacted by the Neurologist there.

Then a week later I had an appointment with my oncologist who gave us the results of the CT Scan and the colonoscopy which was that I was diagnosed with bowel cancer which then spread to my brain where I had the tumour, but the bowel cancer was the primary cancer and it was incurable.
The CT Scan also showed up things on my lungs and liver so I had to have a PET scan as well - which did show that the cancer is on my lungs and liver too, but very small tumours.

Time for an update on my life

It has been years since I last did my blog, I really only did it when I was living in Sweden so family and friends could see what I was up to. Then when I moved back to England I guess I felt there wasn't much going on and that I was closer to all my family and friends so didn't need to write about anything.

But now there seems to be a reason and a request from some people for an update of what it going on now and what has happened in my life more recently.

As there are a few things that have happened over the past 12-6 months some of my first blog updates will be back dated and then I will probably do one every week,  just to try and keep more of an update for those that want to it.

So here is the first update:

March 2016: After being head hunted for Lieca Biosystems in Milton Keynes for being a Swedish speaking Customer Service Specialist to look after all of Sweden and thinking it would be an amazing job I moved there and worked there for 16 months. I loved meeting new people there and made some good friends, but unfortunately the management was not so good and after loosing staff in Sweden, some leaving and some being made redundant, I had no-one to help me or our customers. By this time I had started getting migraines and put it down to the stress of the job. I was referred to a Neurologist in December 2015 , but the appointment was 3 months away in March 2016.
The only thing I got from my manager was to work on the UK Sales Team, but I'm not into sales and if I was only going to do UK work I could do that by moving back to Poole so I could be closer to my family and the beach and that is what I did in March 2016, moved back home to live with my parents and Felicity.
But I did go to my Neurologist appointment the day before I left, where I was told that people with migraines are people of habit so I needed to try and create habits to stop the migraines.