…Then read this!! Here it is, the long awaited catch up I have been promising- although to be honest I have forgotten half of what I probably was going to say!!
So, I think I will do this by months.
I left clinic to go to stay with Leanne and Donald who were a week away from having their first baby. Leanne- never content with being anything less than perfect managed to impressively go into labour on her due date ☺ Little Archie was born on 12th October perfectly healthy and in time for me to see him before I went back to Jersey. He was so adorable- I will never forget my cuddle with him only 2 days old and that delicious new baby smell. Leanne looked amazing and I was so honoured to be allowed to be around during that special time. Whilst staying with Leanne, 2 of our lovely ‘Jersey’ friends came over to visit- Suzie and Frances- great to see them as they had both been so kind and visited me whilst I was poorly and living in the UK so it was nice to be able to see them properly. Because I am back quite often I try to make my trips as quick as possible otherwise I never get into a routine at home so I generally don’t get time to see many people. I also managed to fit in a night at my sisters in Eastbourne- my Mum was over at the same time so we had a lovely weekend together, did a bit of shopping, went for an obligatory breakfast doughnut at Valeries and took a walk round the pier. It was lovely to see where she and Andy are living, I can now picture them in their flat which is really nice.
One I got home on 15th October, it was straight into organising my first anniversary / wedding party, generally getting on with lots of jobs at home and catching up with family and friends.
The 1st November was my lovely Nana’s 80th birthday and the whole family (30 of us) decided to meet in London to see a matinee of Mathilda and have a chinese meal which Nana and Pompa generously treated us to. Phil and I went for the weekend and had a lovely time, we tried to do a bit of shopping but realised we find London (Oxford Street particularly) too busy and exhausting so just pottered around- mainly eating! On the Friday afternoon, I went to the Brompton Hospital where I used to be treated, to visit my friend Maysa who was in at the time (she was in the bed next to me when I was very poorly just before I got moved to Harefield for my transplant). Maysa was a massive support to me in those few days and has become a very special friend. We talked about her coming over to stay with us in Jersey this year when she is feeling well enough and I cant wait ☺ I also managed to say hello to Professor Polkey who was instrumental in getting me to Harefield just in time to save my life- I owed him a massive thank you!
Mathilda was absolutely brilliant- I thoroughly recommend it.
The 23rd November was my first transplant anniversary- a massive milestone! We celebrated with as many of our family and friends as we possibly could with a party at the Pomme D’Or Hotel, we managed to amalgamate it into a kind of wedding reception too as we had only had such a tiny wedding and had always wanted to have a party with our friends to celebrate that when I was better. It was a fantastic night- Phil and I had our first (proper) dance ever together and we were just overwhelmed by how many people have cared and supported us and our families through the last few years. Thank you so much to everyone who travelled over especially for the party- Ying-Ying won the prize flying from Hong Kong just for the weekend- amazingly kind!!
Everything went very smoothly- the room looked lovely, our cake which was slightly alternative in choice was absolutely incredible and the food was great too. We just had the best night ever. I managed to get a new wedding dress after a disaster at the dry cleaners with my old one. The highlight I think was the ‘open-mike’ session at the end- for those of you who had gone by then you really missed a treat- not sure I have laughed so much ever! Thank you to the stars of the show- you know who you are!!
I will be posting more pictures very soon.
The rest of the weekend was spent catching up with family and friends who had come over which was lovely and we managed to fit in a special evening at Grey Gables (Grandma’s house) which felt so much better being full of people like it used to be ☺ Just wish Grandma could have been there too.
December, as you will know from previous blogs did not really go to plan. Luckily I was organized with my Christmas shopping as I ended up losing the 2 weeks before Christmas to my toe operation and then a respiratory virus which landed me in Harefield in isolation for 10 days ☹ Luckily I was discharged on the 23rd December and had a lovely Christmas at my UK home with everyone. Phil made it over despite the weather being determined to make it difficult and I got home before New Year in time to see my sister who had come over for Christmas. New Year I was still feeling quite weak so Phil and I just stayed in at home, we did have a really nice evening though and celebrated being together, planning the year ahead- a luxury that we all take for granted.
There wasn’t an awful lot going on in January, I was still feeling pretty run down from being ill in December so was just slowly trying to get back to normal and it really took most of my energy to get necessary household stuff done! I had a check up at Harefield on 7th January which went well and lung function was back up to where it should be so that was very reassuring. I also had a follow up appointment about my foot in Jersey which they were very pleased with. It has made the world of difference to me- it’s amazing how sore a little toe can be. I have now gone on the list to have my other foot done- which I’m hoping will happen in March.
My beautiful Disney was 5 on the 14th January- I just can’t believe she is that old- I still think of her as a puppy!
It was Phil’s Grandpa’s 90th birthday on 24th January which is amazing! We had a really lovely party at the Radisson Hotel with all the family.
So that brings us up to now!
Our house is currently chaos- we are finally moving to a bedroom upstairs! This sounds so simple yet is such an achievement- it just symbolizes how far we have come. Our upstairs bedroom and bathroom were complete dumping rooms so not only have we had to empty and sort them but we are having proper wardrobes built in and the bathroom redone! I can’t wait until it is finished though which should be in the next 2 /3 weeks.
I managed my first weekend at home on my own when Phil went to watch an Everton match, well I did one night and the other I stayed with my friend Emma, who’s husband was also away with Phil. We had a lovely evening being entertained by her 2 year old son Calum and eating Maltesers (once he had gone to bed so we didn’t have to share lol!). It was really nice to feel completely independent though for the first time in absolutely years.
I have developed a love of the cinema it appears and have enjoyed seeing some great films recently- the highlight of which has to be Les Miserables- what a fantastic film- I loved the show anyway and I’m so happy as the film has managed what I have been trying for years- to get Phil to see the musical in London ☺
My book club continues which I am really enjoying and I have also started a Christianity short course which I am enjoying. I have met some lovely new people and found some topics very interesting- particularly as we have done a fair bit on healing (something quite close to my heart!). It has made me think a lot- I will elaborate on this another time!!
Last weekend, Phil and I had a night in St Brelades Bay Hotel which we had got a voucher for months ago- it was a full 3 course dinner and bed and breakfast in a lovely sea-view room and use of the spa. It was a real treat and I went in a swimming pool for the first time for years (well- up to my waist before I decided it was too cold!!). Unfortunately I am not allowed in the sauna, steam room or jacuzzi as they are all a massive breeding ground for germs. I sat and read my book though on a sun lounger while Phil enjoyed the facilities.
We also went for a super meal on Valentines Day at La Taverna. We were given a voucher for there by Phil’s kind cricket friends for our party in November so thought we would use that, it was absolutely delicious!
As you can see, a lot of my recent activity revolves around meals out and food- there have been so many more that I haven’t mentioned and it’s starting to get really bad. My weight is the highest it’s been and I’m not happy about it. I calculated my BMI the other day and its now 24! I was struggling to get it to 17 before and 18 was the minimum they would accept on the transplant list. 24 is normal but the high end of it and I’m not happy. I feel really fat, dumpy and heavy and with summer coming up I am determined to do something about it. I have started the famous 5 and 2 diet which means you only eat 500 calories 2 days a week and eat normally for the rest. Unfortunately with all the meals out I have just described on my ‘normal’ days- I haven’t seen any progress. I went for full blood tests at the GP last week as I was concerned by my constant fatigue which I just cant seem to rectify and all was normal except my cholesterol was flagged as high. It’s not surprising given that I have put on 4 stone in a year but I do need to take this seriously as my heart definitely does not need extra strain after everything my body has coped with. I will be mentioning this to Harefield and getting their advice.
I have been good on the exercise front though- I bought a treadmill which is brilliant and I have been having lovely beach walks most days with Disney. I am also going to a weekly pilates class which I actually really enjoy and is great for my muscles etc. I also go to physio which I do some pilates in too so they tie up well. I’m really set on becoming as fit as I can during this summer- I’m hoping nicer weather will make everything easier ☺ My lung function is good at the moment- on 24th January I hit an all time high of 92% which I’m over the moon with- although my real target is to hit that 100% mark- the only thing that will do this is serious exercise!
I mentioned above my fatigue- it is really quite debilitating at the moment and is getting me down. I’m having to cancel some of the few things I do arrange and that is an absolute pet hate of mine- I shouldn’t be doing that these days. There doesn’t seem to be any specific reason for it although I will be asking at Harefield. I am putting it down to the miserable weather and the constant stream of nasty germs that are around at the moment- I think I am probably just constantly trying fight new bugs. Bring on the summer!
I am still waiting for my stomach operation to deal with my reflux problem. There was a delay in my referral with a paperwork issue with me not being an NHS patient but I think this has now been sorted so I’m hoping to be seen by St Mary’s Hospital soon. It is very important, my reflux is getting worse weekly at the moment and I have had a few scary episodes where I wake up completely choking in the night. This is very dangerous for my new lungs so hope it wont go on too much longer.
I’m off to Harefield on Monday for a check up and then Phil and I are going to try take a few days holiday somewhere for a bit of a break. I’m quite nervous at the thought of going away now so I want to build up my confidence and start quite close to home before I take on a longer distance! Will keep you posted on this front!
Finally, I wanted to mention ITV’s campaign this week “From the Heart’, raising awareness of organ donation. I hope this hasn’t escaped your attention- it has been a brilliant campaign- 33,000 people signed up to be an organ donor in a hour on Wednesday night and over 120,000 people over the course of the week which is just fantastic.
Some figures for you:
-You are more likely to need an organ during your lifetime than donate.
-96% of people would accept an organ but less than 30% of the Uk population are registered as a donor.
-It is more important that your family know your wishes than actually being signed up to be a donor as they will have the final say. You will make things so much easier for them if this issue has been discussed.
-There are no lower or upper age limits to being a donor.
-There are very few medical conditions that will stop you from being a donor- most people would have at least one donate-able organ.
-Being a donor will never affect the care or chance you are given should you be seriously ill.
-When organs are harvested, it is done with the utmost care and respect- the donors are treated as absolute heroes.
-Jersey is part of the same national register and our figures for registrations are shocking.
From my personal experience I cannot tell you what a precious gift organ donation is- one amazing lady has given me a chance to live, given me so far a whole 15 months extra with my family and hopefully many more. I cannot express the gratitude my family and I feel towards them and their family.
So can I leave you with a question- would you accept an organ for you or your child if you needed one? Are you prepared to give someone else that chance if the worst should happen to you?
If anyone would like advice or help to sign up- please let me know, I’m more than willing to assist. ☺
Lots of love