Friday, 9 January 2015

Well it has been nearly 2 years since I last posted but that is because life has been full, good and busy
I had my last Haematology appointment in November 2014 and I was discharged!
Lymphoma usually reoccurs within the first two years, so with no further problems I was finally pronounced  "in remission" or "completely healed" as I prefer to beleive.

This year I celebrated my 50th birthday in October, being thrilled to reach 50 when the story could have been different.
My wonderful husband took me on a secret holiday for 3 weeks; Flew to Vancouver then took an amazing Alaskan Cruise for a week. We then travelled across Canada on the train with two nights on board, through the Rockie Mountains to Melville. He had arranged without me knowing anything for my family to meet us there. I haven't seen my cousins for 40 years when they emigrated and my closest cousin was diagnosed with Myeloma in the summer. I had wanted to see him for so long but had never been able to get out there for various reasons. We had a wonderful reunion and I saw all my family there.
When we came home I had a party the following week with family and friends to celebrate in style!
Two days after that we moved house into the countryside! So life has been very full!

I have ongoing leg pains which we cant get to the bottom of. I think it may be Chronic Tendonitis and it limits my walking a lot. Today I am having an MRI scan on my knee to see if that is contributing as my knee has swollen recently. There are no concerns about this being secondary cancer of any type but it does limit my exercise a lot.
My new GP has been very proactive is investigating so I feel well supported by my GP again.

As the girls are no longer at home now, we are enjoying our time as a couple and planning to visit California in the summer. There will be some Disney with my Step-Children but my daughter and me are looking forward to exploring LA, visiting Hollywood and some famous beaches!
I now have travel insurance to travel anywhere in the world, and did get it last year at a premium of only £100 excess with HSBC.

I would love to hear from anybody else who has been affected by Lymphoma and will aim to update this blog more frequently.

Happy New Year to all my followers!

Thursday, 11 July 2013

One year ago today I received my diagnosis from my GP; I remember well the intense anxiety and fear of what was to come that I felt that day.

One year on and I am back to full health, back to work and happier than I have been for many years.
I could never have imagined this time last year that I would be in such a different place this year.
My hairstyle has changed, my name has changed, my outlook on life has changed and I thank God for bringing through tot he other side.
Last weekend my lovely husband took me to London and we saw Michael Buble in concert on Friday night, a relaxing day Saturday on Hamstead Heath, then dinner at The Ritz on Sunday. I sat there and nearly pinched myself to believe that it wasn't a dream and that life is so good and I am well. I have a wonderful man to share life with.

I am having physio treatment on my shoulder now as it became quite painful at extremes of movement. I am in expert hands with the Head of Department at the hospital who is gently mobilising the stiffness away. We are not sure exactly what has caused it but I'm convinced that the chemo drugs played a part in affecting my muscles and causing stiffness within them. I am going to do a bit of research around the subject.
My calf muscles still suffer from pains also which eases with walking and gets worse with rest, so I guess I will just have to keep walking!

My next hospital check-up is not until November, but I have a Bone Density scan booked next week to check the state of my bones with my forced menopause caused by the chemotherapy. I am hoping to avoid HRT as I do not want to increase my risk any further of developing another cancer, but at the same time do not want to become Osteoporotic.

My hair is now about 3 inches long, but very curly so appears shorter. I have my first proper haircut booked for next Friday which I'm very excited about!

Preparations are under way for my eldest daughters 23rd birthday this Sunday; This year we can celebrate properly without the dark cloud hanging over us. We will enjoy the sunshine with Pimms and a special home cooked Indian meal, and celebrate all being together. Harry Potters Studios in London is booked for her birthday present.

In the words of Michael Buble last week;

Its a new dawn, its a new day, its a new life, and I'm feeling good!

Thursday, 25 April 2013

I now write this blog as Mrs James!

The big day went better than I could ever have hoped for. There was a last-minute weather crisis with several inches of snow being forcast so a wedding umbrella and wellies were bought in preparation!
However, although being bitterly cold, the snow held off her until the afternoon when there was just a covering. Some lovely snowy scenes made the day even more special.
I had my first haircut the week prior to the wedding, which tidied up the curly sprouts! I had just enough hair on the day to look like a short haircut rather than a number three! I'm still getting used to the darker colour.

Having three weeks off work was very timely. It gave me opportunity to prepare in a relaxed way for the wedding and honeymoon, shopping for a few new clothes too.
Two weeks in Gran Canaria sunshine was just the perfect place to relax and recharge after my first few months back at work. I felt so much better in myself by the end of the holiday with hardly any tiredness.
I am still getting a lot of muscle aching around my shoulders and they can be quite painful at night time if I try to lift my arm up suddenly. I did get a massage when I came home with my usual lady at Starthrowers and she said that shoulder pain is quite common following chemotherapy but is temporary.
I have also joined a local heath club to be able to swim regularly as swimming helps work all the muscles to make them stronger. A jacuzzi there also helps to relax them off afterwards.

My return to work was fine, as i was ready to go back and share photos tec with friends and colleagues.
I still have limited private work, so working about 23 hours each week. I have several new referrals that will increase that over the next month or two.
The hospice increased hours are being discussed still and may not be established until Sept/Oct. This would be better timing for me to consider a full-time post.

My hair is now very curly and between 1-2 inches all over! It is a new look that I am enjoying but cant wait for some highlights!

I have my next consultant appointment in a few weeks when I hope a scan will be on the agenda to check everything is as it appears. I do still get some uncomfortable feelings in my chest which may be radiotherapy scarring, but would like to know it is not the lymphoma I can feel.

Below is a photo to show my new hairstyle and my very special wedding day with my special husband





Thursday, 7 March 2013

I have realised that I have not updated my Blog since seeing my Oncology Consultant in February.
There was no definitive outcome, but judging by my progress with returning to work and diminishing fatigue the treatment was regarded as successful. A scan at this stage was discussed, though the results could be inconclusive, therefore it thought better to wait a few months until my next appointment in May to discuss further whether this was necessary.

Since then I have continued to feel a bit stronger each week and a bit less tired in the evenings. I still tend to crash around 8.0pm and have an early bath to relax my muscles off. I have suffered over the last few weeks with some pain in the muscles around my shoulders and upper back which eases a lot in the bath. Maybe some tissue changes from the radiotherapy , but a massage at the Starthrowers Centre helped a lot. The lady who gave me a massage during my chemo is away until mid-March so I will have to wait a while to see her but I think regular massage will help to work through any scar tissue that may have formed.

Wedding preparations are well under control now with everything booked, outfits bought, flowers ordered and honeymoon tickets due to arrive any day! I am excited about the big day, but really looking forward to two weeks away on our own in the sunshine! I have three weeks off work, one before the wedding and two after so should be able to have a relaxing and refreshing break.
My hair has grown enough to look like a short haircut now instead of a number 3 or 4! It is starting to curl and there is no grey! So I feel less conscious about my hair for the wedding day and have found a lovely hair decoration (not fascinator) to compliment the hairstyle.
I was even told that I looked much younger with my hair short this week, so I may keep it this way, especially as its a zero maintenance style in the morning!

I do struggle from time to time with fluctuating emotions around events of the last year and before but try to stay positive. I have a new and good future to look forward to and grateful for the chance to live life normally again with happy times ahead.

Monday, 11 February 2013

5 weeks into my back to work schedule and I am now up to my 18 NHS hours with two private patients a week. I'm pleased to say that this has been ok although i do get tired, just rest when that happens.
The decision about my private work was made for me as I discovered that another physio who had been employed to see three of the children in my absence was going to continue seeing them. Initially this felt like a huge blow on my confidence and my finances as this formed half of my regular caseload.
However since getting my head round it, they are all quite physically demanding patients to work with and demanding parents so I'm probably better off without that stress. It did cause concern for my finances as my NHS salary is not sufficient on its own. With the two remaining regular patients I can just keep my head above water and the workload is about right for now.
While debating how I was going to improve this situation, I was offered  an almost full-time post at the children's hospice where the NHS have a contract which I currently work. It sounded like good news although with my hospital hours would be a full-time post. I don't feel ready to leave the security of my hospital post yet so not sure how doing both will work, but further discussions with managers might lead to an easier decision. I dont think anything would change within 3 months as there is a contract in place that would require notice to change.
This would provide security for the future in terms of any sick leave and all my pension terms, holiday terms etc would be transferable without losing out on anything. A Band 7 paediatric post is very difficult to secure these days with a lot of physios being down-banded so this is a great opportunity, but not the right time for me to be working full-time.
Quality of life must come into my decision making as I don't want to compromise my health for work and there will be a second income contributing to household expenses soon.

On the hair front, I am now sporting an Ann Hathaway look, following her crop in Les Miserables!
It is about 1cm all over and quite thick, dark brown not grey!! After many years of having it highlighted it seems dark but at least its hair. A shampoo I was recommended called "Fast" has certainly done as it claims and helped the growth. Amino acids are supposed too treat the scalp to encourage hair growth.
It just about feels like a short haircut now rather than a number 2 or 3.

Wednesday is my Consultant Review with my Oncologist, first one since finishing treatment. I'm not expecting any revelations either way, but will be good to talk through some minor symptons that persist and what to expect in the future. I think a lot will be just waiting and seeing, but hopefully some reassurance about where \I am at right now.
Somehow when all the treatment has finished its harder as there is no regular contact with doctors. Hopefully this appointment will help me to understand what happens from here.

Sunday, 13 January 2013

First week back at work: great to be back after 5 months off and rediscover some normality.

It came directly after our break at Champeneys Henlow, where as a rare treat, my sister, Mum and dad and myself spent 2 days together relaxing together. It was a very special Christmas present from mum and dad, which after my last visit there allowed me to give thanks for the return of good health.My sister and I last visited two days before my diagnosis was given by my GP. It had been a very tense time and difficult to relax or enjoy and pampering as I was limited in what I could access.
This time I had a wonderful facial to restore my skin after the challenges of chemotherapy and radiotherapy. Swimming again was such a treat after the radiotherapy prevented me from even submerging in the bath!
The yoga classes allowed me to stretch effectively and lose the muscle pain I had in my calf .
The food was divine and healthy, kick-starting the healthy eating plan for 2013, to shed a few pounds gained from my period of inactivity.

My energy levels changed from even one week previous, so that the timing to return to work was perfect.
I did however only work 4.5 hours on 2 days!! A lovely gentle start back at the hospital which will continue this way for the next 4 weeks. That gives me oppertunity to build up my private work as my body allows.
This is necessary to bring my income back above 50% of what I have been getting for the last 5 months, but my bank account is still in the black thankfully.
Purchasing a wedding dress even at a 70% discount and dresses for the girls has hit it a bit further but managing to keep the purchases on budget!
The January sales enticed me to test my current stamina state, which improved dramatically with the lure of bargains!

It is just wonderful to be able to visit the supermarket, without feeling total fatigue afterwards and do jobs around the house for more than 20 minutes and enjoy exercising.
I still am a little breathless when I reach the top of the stairs in my house, but it is two flights to the second floor. Some of that may be due to some lung inflammation still too as I sometimes catch my breath with a short gasp as if I cant get the air in.

My skin has returned to normal over the radiation area since changing cream and the redness is minimal now.
My hair is about 1cm long all over and I have abandoned my wig as I decided to return to work without it to avoid the dilemma later of going "naked!" It feels great but is cold at times, so using a knitted headband for a bit of warmth when I need it.

So having been reunited with my man after his holiday away with his children, returning to work and planning the details of our wedding and a honeymoon, life is good!!

Monday, 31 December 2012

So its the end of 2012.
 Little did I know  last New Years Eve, what the year would hold.
Better that I didnt know about most of it as I would have chosen to bypass the year totally.
Had I done that though, I would have missed out on so many blessings. Despite the battle against cancer, I have so much to be thankful for:

  • A family around me that love me beyond measure
  • Friends that will give up their time to feed me, clean my house, buy me flowers, overwhelm me with their love
  • A special man with whom I have learnt to fully love again and have a future with
  • A body that is able to recover itself and regain strength
  • A roof over my head still that has provided a safe haven for us all to heal in
  • Medical Expertise that is able to diagnose and treat illness effectively with 21st Century technology
  • A job to return to with caring staff to support me
  • Time spent with special people in a way I have never had before
  • A hope and a future whatever the outcome 
  • Seeing the world in a different perspective, appreciating the little things more
  • Time to just "be" rather than "do"
To name just few.

I started writing a poem in the summer which I have completed tonight and it seems the right time to share,

The tapestry of life
Life takes us through many twists and turns
As a river meanders its way through  ,
We dont know what lies around the bend
But countless challenges, effortless joy
Make us into the people we become.

Life is easy when the road is straight ,
The pathway ahead uncluttered and clear;
Unexpected circumstances redirect
Changing the route on which we relied
Offering crossroads or even a deep divide.

The road may become tough, muddy and wild
Exposed to the elements, chilled to the core
Life challenges our being to the very extreme
Stretching and testing to refine us more
To become as the person God made us.

Sometimes circumstances, sometimes fate
Delivers a hand we would choose to avoid.
Yet we might miss the beauty of a rugged ravine
Where hardship lies dangerously close
To an unexpected calm.

Embrace the changes, cling not to the old
If a new road opens up before you.
There are no "U" turns in this life on earth
For we need to move on towards the goal 
Which brings freedom and life to the very soul.

So as we say goodbye to another year
We  wait a while to pause to reflect
Of lessons learned and blessings untold
Days filled with silver, bronze or gold
Form the tapestry, we must never forget.

Welcome 2013 with open arms
Unafraid of the events it may bring.
Live life as if each day were the last
Counting the blessings and leaving the past
To itself, and give thanks for just being.

HAPPY NEW YEAR TO ALL WHO HAVE FOLLOWED MY JOURNEY SO FAR...I HOPE WE WILL HAVE MANY MORE DAYS AHEAD TO SHARE TOGETHER!